Mason Ryder

2010-03-27T10:48:00.000-07:00

We will be holding a Funeral Mass in honor of Mason Ryder on Tuesday, March 30, 2010 at 4:00 pm at St. Therese Catholic Church in Portland. Following the Mass, there will be a reception in the adjacent Parish Social Center. All are welcome to come celebrate the life of our precious miracle.

Good Night, My Baby

2010-03-26T09:58:00.000-07:00

Just a few short days after his 2nd birthday, our precious miracle, his Mama’s “Bubba,” his Papa’s “Sweet Pea,” lost his fight for life. Mason Ryder was our heart, our soul, and our joy. In his short life, he taught us how to love unconditionally, to hope relentlessly, and to believe in miracles. He endured so much physical pain for much of his life, but never seemed to let it bother him. All who knew him were amazed by his strength and resilience. His laugh was infectious, his smile perfect! We are comforted in knowing that we will again see him some day, but feel enormous pain as we can no longer hold him in our arms.

Thank you all for your love, your kind words and prayers in times of trouble, your celebration of his successes, and your unending support as we have walked this journey with the love of our lives, our son.
Funeral details will be forthcoming.

2010-03-25T20:11:00.000-07:00

Mason continues to persevere and had a few smiles and a few minutes of play today. He is sleeping nearly all the time, but wakes every hour or so for a few short minutes. His saturations continue to be low most of the time. We are in constant contact with his providers making sure that he is comfortable and has the best quality of life he can for the time he has remaining.

At this point, it is becoming too difficult to recap as we keep our constant vigil so I may not post a message on the blog every day. Rest assured, though, I will keep you posted with changes as they occur.

Thank you to everyone who has stood by us with their love, their prayers, and their support. We have really depended on you to give us strength to get through each day.

2010-03-24T20:03:00.000-07:00

Not much to write today. Mason continued his fight, though his saturations continue to be low while awake. He sleeps a lot and still wakes for a few tosses of the rubber balls. Tonight, he's struggling to hold his saturations even while asleep. As always, we will continue to keep him comfortable, make sure he knows he is loved by us and so many others, and pray for peace and comfort.

Never a Dull Moment

2010-03-23T19:48:00.001-07:00

We awoke this morning to the nurse coming in saying: "We're going to have to move Mason to another room. The sign outside your door just sparked and then let out a bunch of smoke." My initial response (in my head at least): "You've got to be kidding me!" Yes, it's true. There's never a dull moment in Mason's life! Well, we ended up moving down the hall for about 6 hours (we could have moved back after about 3, but Mason fell asleep for another 3). During the events of this morning, we were reminded how much better it is to be in a bigger room. It was so great to get back in our own little home.

Mason's oxygen saturations continue to fall and he's sleeping more and more. He sleeps for an hour 2, then its up to join the party and have a good time for 15 - 30 minutes. Those wakeful times were spent playing with the rubber balls, throwing things off of the end of the crib to get a reaction, and smiling and laughing with his grandparents and aunt and uncle. It amazes me how his saturations can be so incredibly low, yet he can be sitting at the edge of the crib with a smile on his face and have enough energy to play to the crowd. When we tell the stories of his saturations and play time to nurses and doctors around here, they are amazed. No one they've ever worked with or known has had saturations that low and been awake, much less awake and playing.

Mason's resilience, determination, stubbornness, strength and ability to have fun while the worst is happening continue to inspire me. In my lifetime can only hope to be half the person he has become in just 2 short years. What an amazing little boy!

The Fighter

2010-03-22T19:52:00.000-07:00

In true Mason style, today was a day of fighting, playing, and cuddling. He awoke this morning with a smile (after having been up for a few hours last night) and had a good time playing with his Staramama. After some good play, he had some great cuddle time with Staramama, but when we attempted to put Mason back in his crib, the fight was on. He only wanted to play or cuddle, and had no interest in falling asleep, despite low saturations.

Finally, after some good cuddle time with Mama, Mason finally fell asleep, but only for a short while. This time, though, he woke himself up by sitting up. I'm pretty sure he didn't realize what he was doing or that he would even end up awake, but apparently, it was time to play. Despite continued saturations low enough and carbon dioxide high enough to cause any of us to sleep all the time, Mason really wanted to play. He played with his rings, he played with the rubber balls, and he played with any syringe that was handed to him. We could tell his body wanted to sleep, but his spirit continued to play, laugh, and smile. What an amazing fighter!

I fear we are very close to the end for Mason. We cannot turn up the oxygen any more and are only able to maintain ok saturations when he's sleeping. I once again pray for peace and comfort for our little fighter and hope that the time we have left continues to be full of play and cuddles.

A Happy Birthday

2010-03-21T21:50:00.000-07:00

Today we celebrated turning 2. Last year he brought his birthday party to our house. This year we brought it to him. It was a day full of pizza, cupcakes, presents and playtime. With Staramama, Pom Pomp, Uncle Ryan, Mama, Papa we played ball toss, ring toss, wet washcloth and even had naptime. There were many giggles from Mason as he learned it is great fun to throw the balls over the crib and watching Aunt JuJu and Uncle Charlos try to catch it, miss it, then chase it just to wash it and start all over again. Mason giggled and giggled watching Pom Pomp bounce the balls and even tried to do the same in his crib. It was so much fun Mason had to take breaks in between entertainment acts to catch his breath from giggling.

It is amazing to watch Mason enjoy playtime so much and we are thankful for these precious times we have with him.

Play Time On the Eve of His Birthday

2010-03-20T19:15:00.000-07:00

We continue to be "blessed" with several hours of play time every night. Mason has decided that time to wake up is somewhere around midnight or 1 am and can stay up anywhere from 1-4 hours. We've come to realize that this is not likely to change anytime soon, so Bill and I have begun trying to sleep some during the day. It's quite the challenge, but every once in a while we can catch a little nap to rest up for the fun filled hours each night.

Unfortunately, Mason's IV came out today, so he had to have another one placed. After a couple of attempts, we finally have a replacement. The good news is that it is now in Mason's leg, so he has both hands free. This was really important today as his Aunt JuJu and Uncle Charlos brought him 4 rubber balls to play with. He had such a great time throwing the balls and laughing at the responses he got. That would have been much harder with only 1 hand!!

Mason was also able to go on another wagon ride with his Aunt, Uncle, and Staramama. He continues to have a great time riding around and has smiles to share with anyone who will look. He's quite a celebrity around here, so I'm sure you can imagine there are lots of smiles to share. Those smiles make each day a little brighter.

His oxygen need continues to rise and Mason continues to sleep much of the day. As we arrive on the 2nd anniversary of Mason’s birth, I am amazed at how similar the emotions and the circumstances are. The weeks proceeding Mason’s birth were heavy with worry of whether or not our son would survive to be born. The weeks proceeding Mason’s 2nd birthday have been equally, if not more heavy with worry of whether or not he would survive to see this birthday. And now that we have come upon the day, just like on the day he was born, it is unlikely he will live and if so, for how long.

We face tomorrow with very mixed emotion. We are so glad that our son is still with us, but very heavy hearted knowing that it will be his last birthday. Our hearts are so heavy knowing that every day we have is one day closer to our last day with him. We treasure the cuddles, the laughs, the smiles, the wonderful memories of the last 2 years and will keep those in our hearts forever.

Entertaining the Crowd

2010-03-19T20:29:00.001-07:00

Mason had a fairly ok day that was all but boring. As far as his medical condition, Mason continues to need more oxygen every day, but today, we didn't see the jumps of the last few days. Things seemed to be stable for the day

Mason played host to lots of visitors today and had laughs and smiles for every one of them. He has always been such a social kid who loves to meet new people and have a good time with people he knows well. It is great to see that even though he's gone through what he has these last 3 months, his personality is still the same - he still loves to entertain the crowd and prefers a laugh to a cry any day!

We're A Flyin'

2010-03-18T21:00:00.000-07:00

Mason slept for most of the day today, but had some really good awake time in which we were able to take in for a ride in his very own brand spankin' new Radio Flyer. He had a fantastic time smiling, chasing Mama, waving at the ladies, and riding around in the PICU. We are so thankful for those good times!

Day? Night? Does It Matter?

2010-03-17T20:02:00.000-07:00

I think Mason has officially decided that the wee hours of the morning are much better for playing than the light of day. Either that or he's got a thing for the nurses who take care of him at night. Regardless of why, it means 2 things for Mama - not a lot of sleep, but some good quality time with her little one. Last night's play time ended up being about 3 hours.

Today was a bit better than yesterday from what I saw and what I heard. Mason awoke in time for Rounds this morning and was an active participant. He saturated well while smiling and waving at everyone outside the room. He played well for a while afterward, then had some good snuggles and sacked out for a nice nap. When he awoke, his Staramama and Pom Pomp were here to play and watch after Mason while Mama and Papa took some time away from the hospital.

Not So Boring

2010-03-16T20:05:00.000-07:00

Well, today wasn't so boring, but unfortunately, not so good, either.

Mason decided to stay up a bit longer last night and finally fell asleep around 3:30 or so. I kept waiting for him to awaken again, but caught a couple of zzz's in the chair near his bed. When I woke up around 4 and he was still asleep, I realized that he had finally given up for the night.

This morning, he finally awakened around 11 and unfortunately, never really kept his saturations up for a long time. We turned his oxygen up a bit (now between 74% when asleep and 80% when awake) and things stabilized some. Once again, Mason slept much of the day; I don't know if its because he's tired from being up most of the night or if it's because of another reason. We just hope for a better day tomorrow.

Really Nothing New

2010-03-15T19:06:00.000-07:00

I've got nothing really new to report today.

Last night was a long one with Mason not settling in until quite late. His stomach must have been bothering him because he wanted lots of cuddle time. My arms are getting stronger every day!!

Mason continues to hang in there and for the most part is holding his saturations well. We found out that his Epo shots are working and his blood count is coming up. He continues to have GI issues with his antibiotic and will likely continue his course for another 10 days or so. Guess we should buy stock in Desitin about now. It works great and has served him well in the past. Besides, we can get it prescribed while we're here. Who knew??

Otherwise, a pretty uneventful day. As I said before, boring is good, right?

2010-03-14T20:10:00.000-07:00

Mason had a pretty good day today. Once again, he started his day around midnight. He awoke and was playful for a couple of hours, holding his saturations for the most part. We were able to get in some good cuddle time and some good play time. Unfortunately, when he awoke at around 7:30 or so, he wasn't so good at holding his saturations, so had to be turned up quite a bit on his oxygen for an hour or so. After that bit of time, though, he rallied and was able to hold his saturations in the 80's or 90's while playing and was able to come back down to 75% on his oxygen.

After taking a nap for a couple of hours, he was once again up and ready to play with his Aunt JuJu and Uncle Charlos. He was able to hold his saturations up fairly well and unlike yesterday, didn't need to go back to sleep right away. In fact, he stayed up for about 6 hours and was able to play with his Staramama and Pom Pomp as well.

The only snag in the day was a result of the antibiotics that Mason's on now. As is usual, he has an upset tummy and diarrhea from the antibiotics. We're not sure how long the course of antibiotics is, but hope that his body accommodates to it soon so that he's not uncomfortable.

We are so thankful for the good day with all the playing, laughing, and cuddling!

2010-03-13T21:33:00.000-08:00

Sorry for the late post.

Mason had a fairly comfortable day. He started off the day almost right on the stroke of midnight and was up playing with Mama at first, then Papa took over. All in all, he stayed up and played for about 2 and a half hours. We decided not to give him anything to help him sleep and just enjoyed the play time. He slept well for the rest of the night and even allowed us to sleep in until about 8:00 or so.

After waking this morning, he did well with his saturations and stayed up for another couple of hours playing with Mama and Papa and his nurse once again. For the rest of the day, until about an hour ago, he slept most of the time. His saturations were all over the map again with lows into the 30's when agitated and into the 90's when sleeping. Most of the time, he stayed somewhere in the 50's and 60's when awake.

Though we didn't get much play time during the day, it was reassuring that Mason was sleeping comfortably. However, since he slept all day, its entirely possible that he will be up a good portion of the night. Again, we'll take what we can get and treasure each moment.

Broken

2010-03-12T18:04:00.000-08:00

For the 3rd time in Mason's life, we have decided to continue with the therapies he is on, but to withhold cardiac resuscitation if his heart should stop. Sorry to be that blunt, but unfortunately, we are at that point.

Mason continued on the albuterol treatment throughout the night and unfortunately got some fluid in his lungs at times because of the setup. With that mishap, we have decided not to continue the continuous treatment, but will continue with albuterol puffs every 2 hours. It seemed to help him while he was on the treatment, so we should continue it.

About 2 hours after stopping the treatment, we ran another blood gas. His levels were so high that the machine wouldn't even record it into the computer (pCO2 = 147, HCO3 = 61) so they sent the rest of the blood sample to the lab. His values were not quite as high, but still markedly elevated (pCO2 = 135). We have nothing to compare with the value from the actual lab, but looking at the values from the machine in the PICU, it looks like the albuterol treatment did not make changes in his carbon dioxide level overall; it keeps climbing. So, though we are going to continue the treatment by inhaler, we are not hopeful that it will bring his carbon dioxide level down.

We were hopeful that the carbon dioxide level in Mason's blood would be lower because the number that measures the amount of carbon dioxide exhaled into the ventilator had come down. What we learned today was quite disheartening. The fact that the 2 pieces of information are getting further apart is indicative of a worsening of his lung disease. It basically means that there is less lung working to push the air out, so it's getting measured inside the body (in his blood), but he is not exhaling it. We are, obviously, crushed with this news. Apparently, the worsening carbon dioxide levels in his blood are telling us that Mason's lungs are not getting better as we thought last week, and in fact, are much worse. We knew that the rising levels weren't good, but were hopeful that there was something we could do to treat it. Unfortunately, Mason's lungs are not responding to the treatment.

So, we are again going back in time and are at the point where we were 1 month ago. We will not be bringing Mason home. We will likely soon be saying good bye to our little boy. Until then, we will try to hope for a miracle, but more realistically will be praying for peace for the love of our lives and treasuring every second we get to spend with him.

Full of Gas - and Not the Good Kind

2010-03-11T21:15:00.000-08:00

Overnight last night, Mason had 2 major desaturations and had a little trouble recovering. Then unfortunately, today was another rough, scary day that started off bad, got worse, and now is a bit better we think. Upon waking up, he again had trouble holding his saturations unless he was sleeping. Mason's carbon dioxide level was measured today, not estimated like in previous days, and was really, really bad (pCO2 = 140, CO3 = 58.9 for those of you keeping track). We got another xray which didn't really look too different and called for a pulmonology consult. We also ran some labs for the kidneys, and found that Mason is now a little on the dry side, so his nephrologist (kidney doctor) decided to make some changes with his food as well as change some things with his diuretics and electrolyte supplements.

And now back to the lungs:
When the pulmonologist (lung doctor) came in today he listened to Mason's lungs for the first time in a month. We heard in our care conference last week that he had been following from afar, but it was nice to have him come by, though a shame that it was only because Mason was worse again. Anyway, he listened to Mason's lungs and noted that they sounded really tight and that he wasn't moving air well which could be contributing to his high carbon dioxide level. With much reluctance, at our urging for finding out what our options were, the pulmonologist suggested continuous albuterol nebulized treatments through his ventilator tubing. He kept saying that whether we did the treatment or not depended on the philosophy of treatment. He said that with comfort care (which is what Mason was when he was a DNR), they would do nothing and just allow Mason to go to sleep and die. But, if we wanted to be more aggressive, we could see if the continuous albuterol will help. What was very unsettling was that he seemed almost mad when we asked what our options for treatment were and even more put off when we reinforced that Mason was now a full code and we wanted to treat his symptoms. Thankfully, we were not the only ones in the room and the doctor who was with us noticed his attitude as well -- it wasn't just our own defensiveness. The doctor who was with us agreed with our interpretation that the pulmonologist likely disagrees with our choice to change Mason from a DNR to full code, thinks that Mason has outgrown the capacity of his lungs, and doesn't think he has a chance.

I can't do justice to how upsetting this interaction was for us. I understand that our decisions may not seem right to everyone, but really, this is scary enough. We don't need to feel judged. We need to be given the information and allowed to make the choices we feel is right for our child. After this interaction, we were so mad, so scared, so disappointed, and so sad all at the same time.

Well, we're now about 10 hours later and have seen a decent response to the nebulized albuterol treatment so far. At the same time, Mason got another IV and they changed both the lasix (with a lower dose) and the steroid (with a higher dose) to be given by IV. He went from being extremely lethargic this morning to being active and awake this afternoon. He seems to no longer have a headache or other area of pain. I even was able to get him to smile and laugh a little bit today which I haven't seen in the last few days. His volumes on the ventilator are better signifying that his lungs are expanding and contracting a bit better allowing more gas exchange. His saturations are better both when awake and asleep. His reserve is better so that he doesn't desaturate with all activity and every tantrum and he recovers a little more quickly. Unfortunately, we can't draw blood from his IV, so we'll wait until morning to draw his blood gas again - no sense in waking the sleeping baby by sticking a needle in his arm.

At this point, we don't know how much we can hope for or whether or not this improvement will last. We are encouraged that there has been a decent response, but so guarded given that he was doing so well last week and so poorly this week.

Back In Time

2010-03-10T19:13:00.001-08:00

Thankfully, though we virtually went back in time today, we are ending the day about where we started, but much better than where we were headed. Mason had a really bad day today with his climbing carbon dioxide reaching a critical point, his oxygen saturations tanking, and his ventilator needs going up.

We've watched the trend of the carbon dioxide level going up over the last week and yesterday were able to pin point the likely reason. However, before being able to do something about it today, Mason decided that we needed to act more quickly. I left to take a walk at about 10:30 this morning while Mason was sleeping and doing ok. But by 11:00, his carbon dioxide level was out of control and his saturations were plummeting. Thankfully, the RT today was the one who has worked with Mason the most and understands his needs. She adjusted his ventilator settings, bagged him for a little more oxygen and stabilized him for the moment. We also increased his steroids a smidge (giving half of the wean from last Friday back to him), gave him an extra dose of lasix , and increased his oxygen concentration to help him stop getting worse. About 5 hours after it all started, we started to see an improvement. It was a very long 5 hours in which we weren't sure if we were too late in making the changes or if we were causing more problems with his low saturations. Mason was quite agitated and with each temper tantrum, his carbon dioxide climbed and his saturations plummeted again. We tried everything to keep him calm and allow the ventilator to do it's job, but most of the time to no avail. Finally, we remembered how much he liked being held and bounced when he had reflux so bad when he was first came home. It was worth a shot, and thankfully, seemed to do the trick. As he calmed down, his carbon dioxide level came down, his saturations went up, and we were able to bring the oxygen concentration back down bit by bit. He still doesn't do well if he gets too agitated, but is in a much better place than earlier today.

Today has been a long day with a lot of emotions resurfacing that we were hoping to put behind us. We still have a very long road ahead of us and hope that we can resume seeing improvement now that we've learned a little more about Mason's ventilator and steroid needs.

Rate: 35
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 68%

Gaining Strength, but Not Momentum

2010-03-09T19:24:00.000-08:00

We enjoyed our first night and day in our new home and have settled in nicely. It's nice to have enough space to allow Mason to get down on a mat on the floor so that he can play and still have some room to move around the room. In the last room, we had to move the crib out of the way so we could fit the mat on the floor. Unfortunately, moving the crib blocked the us from getting around any other part of the room. We really love our space!!

Mason has continued to have some difficult with his saturations since decreasing the steroids the last time. We have tried to help him blow off more carbon dioxide, but this doesn't seem to be helping him out at all. Today was another day in the 60's and 70's for saturations while awake and primarily 80's while asleep. He has been asleep much of the day waking for a few big events including physical therapy and bath/bed change/trach change which truly wiped him out!

In his first PT visit while in the hospital, Mason showed the PT how determined he was. Despite being really sleepy (he did almost everything with his eyes closed!), he showed her that he could roll around, sit on his own and pivot around while sitting. When we tried to put weight on his feet, he adamantly refused and threw a 2 year old temper tantrum. While his movements are not as fluid as they used to be, he still knows what he wants and moves around determinedly trying to get what he wants. Within minutes after the PT left and we put him back in his crib, he pulled himself up to sitting - Nice timing, Son!! Then, to our complete amazement tonight, after his bath and trach change, we played on the mat again and Mason was able to hold on to my hands and take 1 good step and 2 attempts at smaller steps. I think he would have gone further if the vent tubing hadn't gotten in his way! We were so excited to see him stand up and take some steps. Progress is progress even if it is not on the ventilator settings!! What a fighter! I can't believe that just 3 weeks ago, he just woke up from being paralyzed and heavily sedated for a month and now is practicing walking again. I am so proud! Who knows, maybe soon we'll be able to take walks around the unit instead of wagon rides!

We continue to battle what is the right steroid level, ventilator settings, and oxygen concentration for Mason. We seem to be stalled for the moment and don't know if it's the steroids, the vent changes from last week, Mason's fluid status or what. He is definitely making his own rules as he goes along. We just have to pay attention to how he wants to play the game.

Rate: 35
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 63%

Changes, Lots of Changes

2010-03-08T20:28:00.001-08:00

For agreeing not too make many changes at once, today was a day of a lot of changes. Oh, and we agreed to all of them. Some of them were medically related, some of them convenience. All in all, though, a better day than yesterday.

Steroids:
During rounds this morning we talked about the major setback we experienced yesterday and asked if maybe we needed to slow down our steroid wean. We realize that it's important to get off the steroids, but if we can't make progress on weaning anything else, then it's kinda pointless. So, we agreed to slow down the wean to a 10% cut every week instead of a 25% cut. Hopefully we won't see as much of an effect. Don't worry, I'll keep you posted!

As far as the effects of the last wean, today was a better day. Mason saturated mostly in the 70's with a few dips into the 60's and 50's. He was also able to wean down on his oxygen concentration some, though not as low as he was on Saturday.

PICC:
One of the agreements that we made in the care conference was to work toward removing the PICC line. It is completely foreign to be in the ICU and not have an IV, but in Mason's case, it is a straight open line into the body that is ripe for infection. So, it is best to remove it. However, we needed to make sure that we didn't need the IV before removing it. We have been using it for blood draws and lasix doses. On Saturday, we switched to lasix by g-tube, but needed to do an IV dose yesterday. After a lot of discussion about it today, we decided that if we needed lasix, we would do it by shot or by g-tube, so no need for the PICC for that. As far as blood draws, we proved that Mason can tolerate those well without too much effect on his saturations. So, no need for the PICC for that. Tonight, all parties agreed and the PICC was removed. Mason is now IV free! For all you nurses out there, don't worry, if things go bad again, we can still use the PICC veins and get another line in ASAP if needed. :-)

ECHO:
Well, upon preliminary report, it looks like Mason's heart and pulmonary veins are changing, too. Mason had a repeat Echo today and the report said that there isn't as much pressure on the right side of his heart. If this is true, it is fantastic news!! This means that the Viagra and his other heart medication are working!! His heart is not having to work so hard to get blood into his lungs to get oxygen. We will verify tomorrow to make sure the news is what we see today.

Respiratory Rate:
Unfortunately, Mason's carbon dioxide retention is increasing. In other words, he isn't exhaling all of the carbon dioxide that he needs to, so the amount in his body and his blood is too high. Months ago when we were first considering the idea of a trach and vent, the rationale was that they would help Mason blow off the carbon dioxide that he was retaining. On the higher settings, the vent was doing just that. However, now that Mason is much more active and using his body more and the vent is on lower settings, he is creating more carbon dioxide and not blowing off enough. One of the ways that the ventilator can do this is by increasing the rate that it breathes for him while he lets it work on it's own. So, after consulting with the pulmonologist today, the respiratory therapist increased his rate. We are hoping that this simple change will be effective and he can get rid of more carbon dioxide with every breath.

New Address:
Yes, Mason, Bill, and I have a new address in the PICU. While on another wagon ride today, Mason noticed that one of the empty rooms on the unit appeared much bigger than the room we have been living in for the last 9 weeks. Mason used his powers of persuasion to woo the nurses into letting us move. We have settled in nicely and amazingly don't have to trip over each other to move around the room. We love it! Well, ok, we don't love it, but it's much better than the other room we were in.

Well, after all these changes today, we're hoping for a very boring day tomorrow with the only changes being decreasing the oxygen concentration. I think that will be my prayer tonight.

Rate: 35
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 64%

Another Rough Day

2010-03-07T20:37:00.000-08:00

Well, sure enough, 2 days after weaning the steroids again, we have another rough day. Mason's saturations have been low today (in the 60's or so) most of the day. It is the same thing that happened last Saturday, and more than likely, the same thing that will happen every time we wean the steroids. Our hope is that it is temporary and he will recover the next day or so. We shall see how it goes tomorrow.

The one compounding factor is Mason's switch from IV lasix to lasix being given in his g-tube. We switched yesterday and it's possible that the potency or dosing was just not enough to keep up with Mason's fluid intake. As a result, he had extra fluid on his lungs. After an extra dose of lasix (by IV this time), Mason peed off a bunch and was able to rest comfortably, sleeping on the mat of the floor while saturating higher than he had all day (85%). Unfortunately, upon waking up, his saturations went down again and we've had to turn his oxygen concentration up to help concentrate. I am hopeful that once we get through this steroid wean effect, we will be able to turn him down once again.

Rate: 28
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 70%

More Activity

2010-03-06T20:55:00.000-08:00

As we wean down on the methadone, Mason is getting more and more aware of what's going on around him and staying awake more (well, unless he has a near death experience like a few days ago). He now has his days and nights straight, and sleeps through the night more often. I am so thankful for all of these improvements, but am extremely exhausted in trying to keep up with my nearly 2 year old as he has so many more cords and tubes to pull on and tie himself up with. This morning, Mason awoke happily at 6am (after both of us slept soundly for about 7 and a half hours!!) and didn't stop until finally going down for a nap at about 1pm. I had a few hours to do what I wanted to do including watching some smut TV (Grey's Anatomy) on the computer and going for a good walk on such a nice day while Staramama stayed with Mason. After those few hours, Mason was up and at 'em again. We took another wagon ride and played on the new mat that PT/OT brought for us for the rest of the day. Mason loved being back on the floor and played for a good 3 hours with Staramama, Mama, and his wonderful nurse. It is so good to see him doing some "normal" things in this anything but normal situation. As I write this, he is fighting going to sleep, but will hopefully do so soon, 'cause I'm about to crash myself! It's been a while since I've had to keep up with a toddler who has things around him to pull on that will get him into trouble! I almost forgot what it was like!

Rate: 28
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 61%

Makin' Progress

2010-03-05T17:47:00.001-08:00

Apparently, Mason got the message that we were looking to head home sometime in the near future. On day 1 of his new weaning plan, he is doing well and happily working according to schedule. Well, truth be told, he has slept for much of the day, but hey, anyway we can make progress, right?? After yesterday's events, I think Mason is pretty much wiped out. He slept quite a bit yesterday evening and even slept through the night last night. He tolerated his wean of the PEEP well and was even able to wean his oxygen during the night. This morning, he awoke on his own and was playful and happy at 6:30. He stayed awake for rounds a few hours later and even sat up to participate (imagine a 2 year old sitting at the edge of his bed with his legs hanging over the side - all the medical team present was elated to see him like this!).

He went back to sleep after rounds and ended up sleeping for another 5 hours. During that entire time, the RT, the nurse, Mama and Papa were waiting and waiting for Mason to wake up so that he could go for another adventure. This time, we were sure that Mason would enjoy it more than last time. He is much more awake now, and we were sure that he would love seeing other people and other sites. As soon as he woke up, we loaded Mason up in the wagon, unhooked the ventilator from the wall and hooked it up to the portable tanks, and off we went. Mason enjoyed a long wagon ride around the department and out into the hallway. He had a great time and enjoyed playing in the wagon after the ride for quite some time. He has done a great job maintaining his saturations and keeping his trach in today! Again, apparently, someone told him that we were going to start making our way toward home and he's now in a race!

Reality check, though. We weaned the steroids again today, so we will have to wait and see how he tolerates this decrease. Please continue to pray that the steroid wean goes well and he continues to tolerate the oxygen level being decreased.

Rate: 28

Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 63%

60 Days and Counting

2010-03-04T17:05:00.000-08:00

I can't believe we've been here 60 days. At times it seems much longer than that and at times it seems it can't have been that long. Today has been a snapshot of the roller coaster we've been riding since the beginning with huge ups and huge downs - and it's only just after 4 in the afternoon.

I'll start with the huge downs. Sometime around 12:15 this afternoon, I watched Mason for all intents and purposes die. These were the worst moments of my life and I am so grateful that they were just moments and that he "recovered" beautifully. Mason is becoming more and more active as he gets stronger and stronger. This is both a blessing and a curse. We are thankful that he is regaining his strength so quickly, but sad that he is so agitated and frustrated that he cannot always do what he wants when he wants because of the ventilator tubing or the other various cords and tubes around him. This morning was no exception - he was frustrated with the trach, the vent, and all of the tubing. He is strong enough now that he can roll over, but because of the trach and vent, he ends up rolling into trouble. After a very big roll around 12:15 this afternoon, I untethered him, unwound the tubing and stepped aside to let him keep playing. After a bit, the ventilator started alarming with a sound that meant he had a high breathing rate or was getting high volumes - nothing new, nothing to worry about. So, then after finishing up what I was doing (probably reading a status update on Facebook), I walked back over to him and looked at the vent. It didn't look right. His breathing rate was way too high and his volumes were way too low, so I thought the vent wasn't working right again. I looked at Mason and he did not look good. I got the RT who was just outside our door who came in and did a very quick assessment - the vent wasn't malfunctioning, but Mason wasn't getting enough air, so she started bagging him. Usually, once we start bagging him, his saturations come up and he starts to perk up. This time, that did not happen. The saturation monitor wasn't picking up anything and his heart rate was dropping fast. Mason did not look good and we couldn't figure out why. So, the RT hooked him back up to the ventilator thinking that might help him and we started to hear air like there was a leak or something. With some brilliant thinking, the RT asked if Mason's trach was even in place. I couldn't believe it could be that simple, but quickly looked under the foam protective layer and sure enough, the trach itself was laying sideways across his neck. I couldn't believe my eyes and thought time had stopped. My fingers worked so quickly to put that thing back in his throat and thankfully, it slid in without any problems. The moment it went in, Mason's heart rate started to go back up, his saturation monitor started to pick up oxygen in his blood and he started to wake up. Within minutes, he was pinking up and he was back to saturating in the 80's. While all this was going on, we turned him up to 100% oxygen, but within minutes after the trach was put back in, we were able to turn him back down to 66% where he had been before he rolled over. I am still shaking thinking about all of this. He had come so far in the last 3 weeks, I wasn't about to lose him now. I can't believe how close we came to losing him because of a stupid "mechanical error." I am so, so grateful for the RT who was here. She stayed calm, she assessed the situation, and she figured out what was going on. God, and all of Mason's guardian angels were once again looking out for him. For that, I am so thankful! You can rest assured, I will be checking under the foam for the trach placement before doing anything in the future!!!

The impact of this event resonated through our care conference that took place just 30 minutes after everything was "back to normal." I went into the conference feeling like Mason had reminded all of us just how fragile his health was. The medical team interpreted it differently. This event showed them that Mason isn't as fragile as they thought. He recovered very quickly from a very significant event with a significant drop in his heart rate and saturations and seemed to be no worse for the wear. They went into the conference feeling like his improvements over the last 3 weeks have been "nothing short of a miracle." Yes, those were the words that were used.

And now for the huge ups. We came to good agreements in the care conference and have re-started the plans for bringing Mason home. We don't know if he has months to live, or if it will be years, or even if it will be a long, happy life. The medical team no longer feels that he has hours or days, or really even weeks. They think he's got a chance. So, we have resumed thinking about a future.

We weaned the PEEP down to 10 today and will stay there.
Over the next couple of weeks, we will be intent on decreasing his oxygen concentration to under 40% (he's on 66% today and if tolerated will decrease by 1% every 6 hours).
We will continue to do all of the weaning on the ventilator he's using now, and switch over to the home vent after he's on the settings he'll stay on once at home.
We will continue the steroid wean as I laid out, but if we can't decrease the oxygen, then we'll keep the steroids at the higher dose until we can.
We are going to work toward getting rid of the PICC line to decrease the risk for infection.
We are going to repeat an ECHO (ultrasound of the heart) to see if the heart medications have had any impact on Mason's pulmonary hypertension (his heart condition).

All of this is going to take time, and as of today, all of the players are aware that Mason is setting the timeline and the rules. I believe that we will be working together to help Mason avoid any complications and do as well as he can in his progress toward recovery.

I have saved the best for last (or at least it's the best in my mind). The hugest up for today came during the care conference. When we asked about Mason's prognosis and whether or not we should reconsider some of our decisions about his care, it was suggested to us that we reconsider his code status. We are so happy to report that for the 2nd time in Mason's life, we have changed from a Do Not Resuscitate status to Full Code. In other words, there is enough potential for Mason's quality of life that we will do everything we can to keep him alive. He has clearly shown us that he ain't done fighting yet!

Rate: 28
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 66%

Huge Volumes

2010-03-03T19:56:00.001-08:00

Today was a pretty good day. We weren't fortunate enough for a full night's sleep, but Mason did only wake once last night. I can report, though, that he woke in a good mood and was much less frantic for most of the day. As a result, saturations were overall better. He stayed mostly in the 70's and 80's while playing. He did take a nap today, but didn't end up sleeping for too long. Does that bode well for tonight's sleep??? We shall see.

We ended up weaning the ventilator twice today because Mason was showing big volumes of air with his exhalation. We were told that 15 mL/kg was high and could put him at risk for over inflating his lungs and creating a pneumothorax (a collapse of the lung because of a rupture of Mason's pockets of carbon dioxide in his lungs). Normally, Mason does well when he has volumes around 9 or 10, but sometimes goes up to 13 or so. This morning, after suctioning, he was staying at 17 and 18, so instead of weaning the oxygen concentration or the PEEP, we weaned the inspiratory pressure (the amount of pressure with which the oxygen is pushed into Mason's lungs). Several hours after weaning it, his volumes continued to be huge so the respiratory therapist used a different machine to make sure that Mason's ventilator was reading the volumes right and sure enough, it was. So, we weaned the pressure again. Amazingly, after 2 weans, he still has high volumes, but 2 weans in 1 days is a lot for him, so we're going to hold on doing any more. We (doctors included) have no idea why all of a sudden Mason's lungs are moving better and allowing more volumes of air to enter and exit. We did have another xray done today and overall there's not much change since the last one 3 weeks ago. We'll just have to see how he does over the next day or so to make sure that he tolerates the big changes today.

As far as the g-tube, it looks better and better. We are hopeful that we'll be able to be done treating it tomorrow or the next day. After doing some research last night, I found that if we used a numbing agent before using the silver nitrate (lidocaine), it might help with the pain (a treatment confirmed today by a wonderful friend!!). So, this morning, during rounds, we asked for the lidocaine and used it this afternoon. I think it worked to some extent, but we still have to wrap Mason's abdomen to keep him from grabbing at his g-tube site. I can't wait for this to be done!!

We have our care conference scheduled for tomorrow afternoon. It sounds like there will be quite a few people there making sure all of us will be on the same page. I am hopeful we can come to a good understanding and be able to move forward comfortably after that.

Yeah for another good day!

Rate: 28
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 11
FiO2: 67%

Up, Down, and All Around

2010-03-02T20:39:00.000-08:00

That's a good description of the day. Basically, Mason's saturations were all over the map today from up in the 90's to down in the 50's while awake. Most of the time, if he was calm, he did great and saturated in the 80's. However, calm was hard to find for much of the day because of a number of reasons.

Sleep:
For the first time in I can't remember how long, Mason slept through the night last night. He fell asleep around 9:30 after a very exciting and fun day with his Staramama and Pom Pomp and didn't wake up until the ENT resident came in at about 7:30 this morning to check on him. I'm not sure why the resident felt the need to come in, but she did and she wasn't subtle. The good news is that she was happy with what she saw and just reminded us to change his trach. Anyway, back to the sleep thing. Unfortunately, Mason's not the most calm person when he wakes up before he wants to, and now is no exception. He played frenetically for quite a while after waking which caused him to take short quick breaths and so he didn't saturate well for that time. After we got him settled some, he did much better.

He took a nap after his bath today and slept for an hour or so before the wound care nurse came in to look at his G-tube site. Once again, he was quite frenetic after that for some time and so saturated poorly. Thankfully, after some cuddle time with Mama, he was able to settle down and saturate a bit better. He stayed awake just long enough to see his Staramama and play a little bit before settling in for another long nap (4 hours!)

Thankfully, after this nap, he awoke on his own and was happy and playful for much of the rest of the evening - with a few exceptions. Right now, he's lying in his bed, playing with Papa - well, really, watching TV with Papa and saturating fairly well.

G-Tube Site:
Unfortunately, Mason has been a little tortured by some work we are doing on his g-tube site. I just did a search to get more information about the treatment we are doing and I'll change that last statement. He has been a lot tortured by the work we are doing. I am so sad that we've had to do it, and really, really hope that we'll be done soon. Anyway, Mason's g-tube site has formed granulation tissue - a type of scar tissue that grows around wounds. Mason's body is trying to close the g-tube site, but since it can't the tissue creates problems. In Mason's case, it was interfering with the tube itself and causing some bleeding. So, we are treating it with Silver Nitrate - a medicine that kills the tissue. Unfortunately, this is very painful for Mason, but necessary. We are making progress and the granulation tissue is nearly gone, but in the meantime, Mason is upset a lot of the time which also causes some desaturation and decreased tolerance for pretty much anything. Can't this guy catch a break?

Decreased Methadone:
Sometime last week, we started weaning Mason's methadone. He has done fairly well since we found out the right amount and rate to decrease. Again, unfortunately, with this comes some trouble. Mason is having to go through some withdrawal again which makes him a little unhappy. I think if he didn't have to go through the granulation tissue stuff, he would be doing great with the withdrawal, but when added together, he's having somewhat of a difficult time. One of the good things that comes with the wean of the methadone is that Mason is more aware of what's going on. He is interacting appropriately, playing a lot, and his eyes are even starting to line up a little better. Maybe being so heavily drugged didn't agree with him! I am hopeful that Mason continues to get stronger so that he can re-learn to sit up on his own. He does get so frustrated that he can't move like he used to, but I think that determined spirit he has will help him regain his strength quickly.

Well, I think that covers it for Mason today. He's got a lot to deal with, but is doing amazingly well despite the deck being stacked against him. Oh yeah, one more positive thing. This morning in rounds, we were all ready to agree to another wean today and the attending intensivist said, let's wait one more day. Maybe we are in fact starting to see things don't need to rush along....

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 11
FiO2: 67%

Can't We All Just Get Along?

2010-03-01T19:17:00.001-08:00

Oh my! Things went from frustrating to infuriating quickly last night and this morning. When Mason went to sleep last night, his saturations were not as good as when he had been sleeping earlier in the day or during the previous night. We talked to the respiratory therapist about turning the PEEP back up, but when she checked whether or not she could, the order did not allow for it. Are you kidding me? So, we asked her to watch Mason's saturations while we all slept and if they stayed low, to ask the resident for an order so that she could turn it back up -- after all, that's what we had agreed to, right? Then, when Mason and I awoke at 3:30 or so this morning, I found out that the order to wean the oxygen concentration every 12 hours was still in there and they were supposed to wean. Thankfully, both our nurse and our respiratory therapist knew this was not in Mason's best interest, especially when his saturations were lower than on previous nights. So, they postponed turning him down and waited until the resident woke up and explained to him that we had talked to the attending during the day and had agreed that weaning the oxygen concentration on a schedule was not going to happen. Apparently, the resident still thought that they should, but because we had refused, the nurse and RT could just chart that "parents refused." More than that, he said we should not go back up on the PEEP, but should use the albuterol (inhaler) treatments as needed to help keep his saturations up. Neither of these decisions were part of our agreements and they put the nurse and the RT in a bad spot between the resident and us. This morning, when we found out about it all, we could not believe it and started to raise you know what! Bill had a brilliant idea and we got a Patient Advocate involved. These are people who's sole job is to help advocate for the patient and bridge gaps between families and the medical team. As soon as we raised Cain, we started to see changes. We started to have better conversations that included us when setting goals and we got an apology from the attending from yesterday. We also started to have movement on a care conference that involves all of the intensivists so that maybe, just maybe we don't have to go through this day after day, week after week. I have to say, I am emotionally exhausted after all of this, but slightly encouraged by the conversations we had today and hopeful that by the end of this week we will have a better understanding of what the medical team's goals are and they will have a better understanding of what we believe Mason needs. What really comes of this remains to be seen, but for now, I remain hopeful.

As far as Mason, the real reason for the blog and the most important person in this process, he actually had a good day. He started saturating better this morning after he went back to sleep at 5:30 am or so. Once he awoke for the day, it was a rough start, but then after a nap, he started to do better. While playing with Staramama and Pom Pomp for about 4 hours today, he was able to keep his saturations up and have a great time! In fact, he did so great that at 2 different times, we were able to turn down his oxygen concentration by 1%. He had so much fun laughing, smiling, and playing with them. It is nice to see him getting stronger every day and able to sit with less and less support. Soon, hopefully, he'll be able to sit and play by himself again.

It is amazing to me how different things can be in 2 days. Saturday was such a dark day for us, but today, separate from the communication issues with the doctors, was such a bright spot. This roller coaster is exhausting, but each good day gives us more hope for a future and each dark day keeps us grounded -- the emotion is indescribable. So, each night I pray for 3 things: strength to make it through another day, that that day is a good one, and I ask God to continue to breathe air into Mason's lungs so that the damage is repaired and Mason can grow new lung tissue.

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 11
FiO2: 67%

Yeah For Stability! Boo For Being Pushed Too Hard!

2010-02-28T19:46:00.000-08:00

Thankfully, Mason has stabilized once again. Late in the evening last night, he began saturating in the 70's and 80's again when awake and the upper 80's/lower 90's when asleep. We are so thankful for the change for the better and praying that this trend continues.

We did "battle" again today with the attending intensivist. Once again, the push is for making progress on the ventilator settings. Her original idea was to wean the oxygen concentration on a schedule instead of "as tolerated" like we have been doing. Apparently, because we haven't weaned for a couple of days, we are not making the progress that she felt we needed to make. I felt bad, but when the nurse came in to do it, I said "NO!" She told me about the plan, and I was hot! The doctor came in a bit later and explained her desire for progress and we explained back that yesterday was not a good day and we are more interested in a successful wean than a hurried wean. We are also quite sure that despite no changes on the ventilator, Mason is weaning other things. After all, 2 days ago we decreased the steroid and yesterday we decreased the methadone. I don't know about you, but to me, those are big changes for such a little guy. For some reason, they are just interested in the ventilator wean and the other stuff is gravy. I think we all want the same goal, we just have VERY different methods of getting there. We finally compromised on weaning the PEEP just a little bit with the caveat that if it didn't work well, we could go back up. Thankfully, it did work.

Just after she left the room, I realized that they did not make the changes in Mason's steroid that I had asked for. When the nurse asked again, the intensivist said she did not want to make the changes because she wanted to keep moving forward and not go back. Once again, I WAS HOT!! Well, let me give some background. I don't remember if I wrote before, but I created the steroid wean schedule. We have been told by many that weaning steroids is more of an art than a true science. A schedule can be modified based on the length of use, the dependency, and the individual. We know very well from Mason's weans before that slower is better and much more successful. So, I created a schedule and wrote it out for the providers. I even asked the resident to give me the information about how the dosage of the IV form compares to the oral form so that if we should switch, we would not make a dosage change. Well, yesterday, at my request, we made the switch, and guess what, they screwed up on the dosage. They ended up giving Mason the same dose as he was on via IV which in effect created another wean of the steroid. So, instead of decreasing the dose 1x/week as planned, they did 2 decreases 2 days apart - setting Mason up for failure. I WAS HOT! I tried to be nice, but explained very clearly what they were doing and thankfully, without too much push back, she agreed to increase the dose. I'm just not sure why we run into these problems - it is so frustrating! Believe me, it's not that I want to be here longer - I really don't love the tight quarters, the lack of privacy, the miniature bathroom, and the shared shower. I just know that if we go slower, we have some chance at success.

I have never been so strong in my life; in fact, I've pretty much been a pushover for a lot of things. But every day we are here, my spine becomes stronger and stronger. I so appreciate this lesson from my very strong son.

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 11
FiO2: 69%

Turning Downward Again

2010-02-27T14:35:00.001-08:00

I believe we are starting to see the effects of the steroid wean today. Mason's saturations overall are lower today than yesterday which were a little bit lower than the day before. Unfortunately, when awake, Mason's saturations are generally in the 60's, lowering to the 50's when he's really active and rising to the 70's when he takes a break. We are once again faced with the very real possibility that he may not survive this admission -- a fact that is weighing very heavily on our hearts today.

I'm sure some are asking why we don't just keep him on the steroids, and believe me, I wish it were that simple. Unfortunately, his lungs don't grow while he's on high doses of steroids - they stunt growth. Additionally, Mason's immune system is significantly suppressed when he's on high doses of steroids, making him a prime target for any number of infections. The cost of staying on high dose steroids is too high, so our only hope is that given some time, he can adjust to the lower dose and stabilize a bit.

We will also be watching Mason's blood count over the coming days and weeks. It is possible that his low blood counts are contributing to his down turn, and if the Epo shots are not enough to get it back up as soon as we need to, we will hopefully be considering transfusion.

For now, please continue to pray for a miracle. Mason's body is fighting so hard and his spirit is still just as strong as always. Please pray that he not only wins this battle, but can win the war!

Splish Splash, Mason's Takin' a Bath

2010-02-26T19:26:00.000-08:00

Again, not too many changes today. Mason, Mama, and Papa all slept in until about 11:30 or noon today since last night was time for playing. Thankfully, once again, our nurse looked out for us and made sure that no one came in our room until we were awake.

The only change in Mason's medical stuff today was the addition of "Epo" shots. This is a medication (Epoetin) that stimulates the production of red blood cells. Since Mason came into the hospital on January 3rd, he's had 3 blood transfusions. These have been necessary for multiple reasons, but because of that, his bone marrow hasn't felt the need to kick in and create more. So, with all the blood draws they have done for various reasons, he is getting low again. This time, though, instead of transfusing him, they are giving him the Epo shots to help his own body make his own blood - better in the long run. We should start to see effects of the shots, maybe with increased saturations, in about a week. They will continue to watch his blood counts and if they get too low, they will transfuse him while we're waiting for the Epo to kick in.

Otherwise, the big event for the day was a bath. Yes, Mason got a full, sit in the portable bathtub, bath today. He really seemed to enjoy it and splashed in the water just like he used to. It was fun to see him playing in the tub.

We kept Mason on the same oxygen concentration today despite saturating really well while he was sleeping last night. He continues to be pretty frantic when awake, so doesn't breathe as well and as deeply as he should. So, when he's awake, he continues to saturate in the 60's and 70's while on 69% oxygen. We talked to the doctor a little bit about this today and she seemed to think that Mason has shown us that he can self regulate pretty well. If he feels he doesn't get enough oxygen, he will relax and rest for a bit (he always has), but if he's up and playing and saturating low, he's probably getting what he needs. His body has learned to adapt to the lower oxygen concentrations over the last 2 years and is likely able to function with less than you and me. Yet another reason to be amazed by this little boy!!!

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 69%

Boring is Good, Right?

2010-02-25T20:44:00.001-08:00

I would almost categorize today as boring. I don't want to rock the boat, jinx us, or anything else, but yes, today was rather boring. Mason slept quite well last night; was only up from 1-2 and then fell asleep with a little bit of medicine. I kept waking nearly every hour wondering what time it was since he wasn't waking up. Guess old habits die hard. Maybe tonight we will be just as lucky and Mason will sleep well.

Today, he was up much of the day and fought sleep whenever he was tired. I guess he didn't want to miss whatever party he thought we were having. Just in Mason-style, he finally did fall asleep, but only after I turned the vent tubing to be parallel with his body and laid him sideways in the crib. Apparently, this way, he could roll around as he wanted to and get that comfy spot at the end of the crib with his foot hanging out that he has liked each time we've been in the hospital.

Oh, how could I forget the big event of the day...Mason's ventilator finally went belly up. Apparently, it decided that it had worked long and hard enough and wasn't going to function anymore. It had acted up a couple of different times before, but the RTs were able to get it back on track with a change in the tubing. This time, no such luck. So, Mason was "bagged" for about an hour or so while they changed the tubing twice, changed the filter once, and tried 3 times to get it to work right. Finally, after all that, they brought in another ventilator (exactly like the first one), and hooked him back up. Mason tolerated this very well and even wanted desperately to help with the bagging. When we would hold his hands so that he couldn't help, he made sure to get his feet up right against the bag so that the RT could have all the help Mason could muster. Such a kind little fella!

Rate: 28

Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 69%

Deja Vu

2010-02-24T19:27:00.000-08:00

We have once again returned to the land of withdrawal. I got a glimpse of it last night as Mason was "talking" to his aunt and uncle and then Staramama and Pom Pomp on Skype. I saw a bit more of it between 1am and 5am when he fought sleep and wasn't even soothed by his wet washcloth. Then, today, when nothing made him happy and frantically grabbed at anything he could find, I realized we were there. Apparently, a 10% decrease in his Methadone dose yesterday was too much. Thankfully, without any pushback, Mason's doctors were happy to go back up by 5% so that he didn't have to suffer through the withdrawal. I'm hoping with the slight increase, Mason can rest better and not be so agitated when he's awake.

Unfortunately, with the agitation and withdrawal comes a slow down in Mason's progress on weaning the oxygen. Today, during the day we were only able to wean him down by 1%. Since he's been sleeping the last couple of hours, though, we were able to wean another 2%. When he's sleeping, he continues to saturate in the mid 90's, but when awake he's smack-dab in the 70's. I am hopeful when we get back to seeing the playful happy little boy, we'll be able to continue to come down on the oxygen concentration. The challenging thing is that this progress may also be complicated by another wean of the steroids. Mason did very well with the last wean of his steroids, especially considering he had a bunch of ventilator setting changes at the same time. Tomorrow we will see another reduction in the amount of steroids he is getting, so the next couple of days will be another test for his lungs. I again, say a little prayer for the success of the wean and hope that he will tolerate it without a worsening of his lungs.

Many of you may be wondering about how Mason is doing other than his oxygen and his saturations. When we thought we would be saying good-bye to him and decided not to resuscitate him should things go so wrong, we actually did have a couple of times when we thought we were seeing the end. We had a few times when Mason's saturations were dangerously low and may have affected his brain. We cannot be certain at this time whether there is a lasting effect or not, in part because we don't want to put him through the tests right now and in part because he is still on heavy doses of sedatives and narcotics. The one thing we know for sure is that Mason's eyes do not track together like they used to. Which eye is not tracking seems to change and sometimes they do line up as he looks at something. We aren't sure if the change is because of the medications or because of some damage over the last 2 months. Time will tell if this will improve or not. On the more positive side, we do know that Mason has retained quite a bit of his communication and motor skills. He remembers all of his sign language he used before we came into the hospital. He still likes to put the little caps to the syringes in a water bottle and despite a lack of coordination in his arms and hands, he can still get those little suckers in the small opening of the bottle most of the time. He still tries to help us give him his medications through his stomach feeding tube. He has regained his head control and is well on his way to regaining his trunk control for sitting. We are pleased at his progress in so many areas, but cannot be certain whether or not there is any damage to his brain. Time will tell.

Thank you to everyone for helping us get through this very difficult time. We are so grateful for the words of support, the prayers, and the other help we have received throughout this ordeal. I continue to pray that we will see slow and steady improvement every day and that Mason continues to tell everyone that he's not done yet!

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 71%

All's Quiet

2010-02-23T21:43:00.000-08:00

I'm going to make this short and sweet tonight because Mason just fell asleep and I want to do the same. Overall he had an ok day. Saturated in the 90's when he was asleep and mostly in the 70's and 80's when asleep. He played more today and had more times of laughing and smiling - something that I love!!!

With the awesome advocacy from our fantastic nurse, the medical team decided to leave well enough alone. They decided that they did not need to mess with the ventilator settings for now. They did agree to wean the methadone a little bit more (we talked about it yesterday) and said they really want to wean the oxygen concentration faster, but that's it. We agreed that we would try to wean the oxygen as fast as Mason let us, but reminded them that we are not going up and down, but steadily down. Yeah, us!!

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 74%

Why Do They Do This Every Time?

2010-02-22T20:06:00.000-08:00

Tonight, as was the case all day, I'm wondering why each "new" attending intensivist thinks that they need to reach some lofty goal by the end of the week. Why can't they just accept that Mason is doing better than they thought? Why can't they realize that it's in part because they've backed off and we've been directing a lot of his care? Why can't they realize that Mason is his own boy and he moves to the beat of his own drum?

Now, please don't misunderstand. I know am not an intensivist (I don't even play one on TV!). I haven't been to medical school. I don't pretend to think that I know more than they do about medicine, ventilators, lung disease, or anything else we have dealt with. I know I am only as good as the information I've been taught by Mason and these or other providers over the last 2 years. What I do know is that Mason has never followed the "rules" of medicine. What I do know is that he has always needed time to adapt to changes and never done well when too many things change at once.

So, now you might be asking why. Why is this coming up again? Well, the intensivist this week has a goal of weaning the PEEP down to 8 or 10 by the end of the week. She realizes that we need to go slow, so maybe going down by 1 each day. Just yesterday we talked to the group about the vent settings and I thought all agreed that we needed to get his oxygen concentration down first. This was the most damaging to Mason's lungs, so this was the most important to wean. Despite that agreement, we've still weaned the inspiratory pressure over the last 3 days. Well, as I wrote last night and as still happened this morning, Mason needed time to adapt to all the changes. Last night and this morning, when he was awake, he saturated in the 50's and 60's. Thankfully, the intensivist this week agreed to make no changes today so that Mason had some time to adapt (though she's still holding on to her goal). So, this afternoon, Mason's saturations were better when he was awake and tonight, they are much better. Right now, he's lying in his crib, playing on his back, saturating in the high 80's and low 90's while on only 76% oxygen concentration. If we had continued to make changes, we would have challenged him too much and he would have fallen further behind. I am so thankful we were able to stand our ground firm enough that no changes were made today. I am so thankful we were able to stand our ground firm enough that Mason is doing better tonight than he was last night at this time.

For those of you following along since the very beginning, you know that Mason has taught us many lessons in life. Tonight, I am reminded of the one he tries to teach again and again and again -- PATIENCE! Mason teaches us again and again that we must have patience for the things that are important in life. I believe right now he is trying to teach the doctors as well. I know at least two of them have learned from him and I hope that the others will as well. Mason needs them to be patient in their care. Do not try to rush him. He will adapt to the changes, just give him time to do so.

Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 76%

A Milestone I Didn't Think We'd See

2010-02-21T21:37:00.000-08:00

A week and a half ago, as our world was coming crashing down on us, I didn't think I would see today. I didn't think I would see the day when Mason turned 23 months old. I feel so thankful for today and am praying that I get to see many, many more milestones and birthdays. I am praying, but trying to keep grounded knowing that Mason may still not make it out of the hospital.

We continued some weaning today including bringing down the inspiratory pressure on the ventilator to 22. I can't remember if I explained this before, so please excuse the redundancy if I did. The inspiratory pressure is the amount of pressure created by the ventilator (measured by centimeters of water) pushing the oxygen/air into Mason's lungs to open up those little air sacs (alveoli). 3 weeks ago, he was on a ventilator setting that didn't measure the pressure, just measured the volume of air pushed into his lungs. However, once we paralyzed him for the detox, those little air sacs started to close up. So, they changed the ventilator settings to force them to open with every breath in and keep them open with every breath out (the latter is call PEEP and that's set at 12). Before this hospitalization, I didn't really know anything about ventilator settings, but am learning more and more every day. Basically, Mason is still requiring a lot of help to open and keep open his alveoli. That pressure both on the way in and held in there with breathing out can cause damage to his lungs. We won't know until much later how bad it is, but this again is why the doctors don't think he will survive this hospitalization. They believe the damage is significant enough that when added to Mason's already bad lungs, the damage is insurmountable. We will just have to wait and see. Our hope, our prayer, is that the damage is minimal and not lasting.

We also continued to wean down the oxygen concentration to 80%. We tried 78%, but when Mason awoke, he was too frantic and didn't hold his saturations well enough for Mama's comfort. It's hard to see him saturate at 98 and 99% on a certain oxygen concentration, but then when he wakes up, he doesn't relax enough to take even breaths, so he desaturates. Up to this point, since starting on the higher dose of steroids again, Mason has been able to hold his saturations at least in the 70's when awake. Tonight, he reminded me of just how sick he is. He was playing for all intents and purposes, but breathing rapidly and not deeply enough to fully oxygenate his blood. So, though he looked like he was playing and a little agitated at the situation, his saturations told of much less tolerance for being awake. He held steady in the 50's and 60's unless I turned up his oxygen concentration for a bit so he could saturate in the 70's and 80's. I'm not sure if this is a sign of coming down on the steroids or on the baseline oxygen concentration, or if it's just an agitated 2 year old in one moment in time. I may never know, but it reminds me of just how fragile my little boy really is and how much I need to keep myself grounded to protect my emotions. It's so easy to get sucked into the "he's doing so much better; the doctors must have been wrong" and then come crashing down when he doesn't do so well.

For now, I will look upon my little boy sleeping comfortably and peacefully in his PICU crib, saturating at 96% on 80% oxygen/20% air, with his ventilator set at a rate of 28, inspiratory pressure of 22, inspiration time of 0.65, and PEEP of 12, be thankful for today - a day I didn't think would come, and continue to pray for a good night's sleep and a better tomorrow.

Adventures

2010-02-20T21:44:00.001-08:00

In the world of Mason, night is day and day is night. Or at least that's how we figure it. It seems Mason continues to wake more often at night than during the day despite a trying to keep the days busy. We were able to get a little bit of sleep off and on last night, but our longest stretch was actually from 9-11 this morning. I thank God for our fantastic nurse for many, many reasons, but right now, it's because she knows how to be stealthy in the morning and keep people either quiet or at bay so that we can get a few hours of sleep when the rest of the world is awake.

More progress with weaning stuff today. Mason is now totally off of the Nitric Oxide and seems to be tolerating it fine. I was a little worried earlier in the day when his saturations were down a bit from yesterday, but he seems to be rallying still or again and is saturating well on a little less oxygen (82% oxygen right now). He also was able to wean down on his ventilator settings a bit, too. We were lucky enough to work with an incredible respiratory therapist today who knows Mason so well and knows what settings will be optimal for him. She changed to a different mode on the ventilator and turned his inspiratory pressure down to 24. It is amazing how much of a difference it makes when the people providing care take the time to learn about their patients and figure out what they really need instead of assuming based on numbers or diagnosis. We were so fortunate to have such great care providers working with Mason today.

We were also able to keep Mason awake and "entertained/contained" for a few different sessions today. He read books with his Aunt Juli and Uncle Charles, watched TV, played with his toys, played a little pat-a-cake, and went for a wagon ride. Yes, you read that right, Mason went for a wagon ride today. He still cannot sit up on his own, but with some great positioning and planning on the part of our nurse and RT, Mason was able to sit totally protected and cushioned in a little wagon and ride around the PICU a couple of times today. He's still so drugged up that I'm not sure how many PICU's he saw on his ride, but seemed to enjoy it. When we got back into the room, he sacked out in his wagon and slept for a bit. It took him a a little while to get his saturations back up into the high 80's after the ride, but once he did, things stayed better. He was clearly comfortable being on the move.

Mason has quite the fan club around here. Nurses from the upstairs floor where we stayed for so long in Oct/Nov last year, doctors who have worked with him over the last couple of years, and people who continue to work with him now stop by to say hi, show support, and check in on Mason. It is so comforting to see how many people's lives Mason has touched. We are so lucky to have him in our lives!

Well, I'm Exhausted...

2010-02-19T22:04:00.001-08:00

...And really, Mason should be too from all of the activity today. Mason read a book with his Staramama, sat up in a Tumbleform chair for a bit, got a crib change, and even played in a fun little saucer thingy for some time today. All in a days' work for a normal kid, but quite the adventure and activity for a little guy who's been heavily sedated or paralyzed much of the last 6.5 weeks. The intensivist was quite impressed when she came by this afternoon and he was slightly agitated, but staturating well. Though we've told her this was the case, I don't think she quite believed us until she saw it with her own eyes.

More changes for today:
We continued to wean down on the Nitric Oxide today without really noticing any change in Mason's saturations. I think he'll be off of it tomorrow. We also increased the calories in his food to help keep up with his nutrition needs. We came down on the methadone a little in an effort to have Mason more awake during the day so that he sleeps better at night. Mason is sleeping comfortably now with the help of some major sedative medication, and hopefully, soon Mama and Papa will be sleeping, too.

Last week, in a Hail Mary pass from Mama, we increased Mason's steroids to a very high dose again. It is in all likelihood a major factor in his rallying over the last few days. Unfortunately, because the steroids are not good long term for a number of reasons (most importantly, they stunt his growth and without growth, there's no new lung tissue), we cannot stay on the high doses. We started the very slow wean of the high dose of steroids again today. Bill and I have talked at length to the resident about our ideas for the wean and they've agreed to go very slowly. Mason does nothing according to someone else's schedule and weaning from the steroids is no exception. I am praying that the steroids were not the only reason for his rallying, but that he is truly tolerating things much better than last week. I must be realistic though, and face the possibility that the last few days have been totally because of the increase in the steroids. If this is the case, the next few days will be a major challenge for Mason and for us. We will likely return to the darkness of late last week and re-prepare ourselves for that possible outcome. Please keep Mason in your thoughts and prayers as we embark on this scary wean with the steroids.

A Day of Changes

2010-02-19T11:22:00.000-08:00

Sorry once again that I didn't post last night. I actually got out of our little room for a while and went to buy some clothes for Mason. See, he still doesn't quite know what's going on when he awakens, so he starts grabbing at everything. If we can put him in clothes, we can hide some of the wires and have a better chance at helping to free the remaining ones.

Yesterday was again a good day. Despite a ton of changes for Mason, he was a champ and kept on fighting. I talked to the doctor about if/when they might reconsider his prognosis now that he's showing a few good days in a row. To her credit, she remained a realist: Anything can happen at anytime and Mason is still very, very sick. She still does not believe he will survive this admission, but if he were to show weeks/months of improvement then plateau, then maybe he might have a chance.

So, for the changes: we were again able to wean down the Nitric Oxide twice yesterday (he ended the day on 0.8). We stopped the Propofol, and he is no longer on IV drips (meaning there are no medications constantly being delivered through the IV). He is now on scheduled IV doses of lasix to replace the other diuretic that was being delivered through IV drip. We were also able to continue to wean down the oxygen concentration and when he went to bed last night, he was on 86%, but saturating in the high 80's/low 90's.

Last night was again a long night as Mason continues to have his days/nights backward. He was awake almost every hour and quite agitated when he couldn't do what he wanted to do (roll over, sit up, move around). He is still getting used to his trach/vent tubing and gets frustrated when he isn't able to move it around or move around it. We are still trying to get his medication level just right to keep him better sedated at night and more awake and alert during the day, but having a difficult time. Hopefully we will soon get a handle on it.

We are still praying daily for another miracle and thankful for each moment we get to play and cuddle with our little guy.

Almost Nice

2010-02-17T19:25:00.001-08:00

Today was a day when for a moment in time, I could forget that my son is fighting for his life. I could look at the monitor and was reminded of a time when his saturations were normal, his heart rate was normal. I could forget the planning we've been doing over the last week. Just for a moment in time. I am grateful for that moment, but saddened to come back to reality. Saddened to remember that we still need a miracle for Mason to come through this.

We weaned down a little more on the nitric oxide and the propofol. We started to wean down on the milirnone (a medication that may or more likely is may not be helping his heart). Tomorrow we will continue the weans and try to transition off of the IV drugs to doing more by Mason's g-tube. We've been able to wean down his oxygen to 91% with stable saturations - to avoid further damage to his lungs, we need to be under 60% and we're going down by 1% every now and again. For the most part, Mason's saturations were in the mid to high 80's today with times in the 90's. There were no scary times, just stable saturations. We were able to sit in the crib and watch TV and play with his medical "toys" a few different times. Bill was able to go home and do a few things at home without having to rush back here for the emergency. It was almost nice.

Reality does come back to us every now and again, though. There is planning that needs to be done. Arrangements that need to be thought about. Emotions that come through. At one point just a little bit ago, I looked at Mason's foot through the crib bars and realized that I am really going to miss that foot. It's so easy to take my mind away from reality, but so so hard to come crashing back. We, again, pray for a miracle.

Comfort and Prayers

2010-02-16T20:42:00.000-08:00

We keep praying for another miracle in Mason's life. I know we shouldn't be so greedy, but it would be nice to have just one more. I realized sometime today or yesterday that we've been in exactly this same spot before. We've heard the same words from the doctors twice before in Mason's life: once when we found out I didn't have enough amniotic fluid and a second time the night Mason was born. We've heard the doctors say there's nothing more they can do to help him. We can either choose to support him and keep him comfortable or choose to withdraw treatment. Both times before, we prayed for a miracle and it came to us, Mason lived. We, again, pray for a miracle.

We made some adjustments to Mason's sedatives yesterday in hopes that he would have a more restful night and be a little more awake today. Well, last night it didn't work, and today he slept much of the day, but did have a couple of good awake times. We continue to adjust to see if we can find the right schedule. Today we were able to play a little bit - Mason still prefers the medical stuff to his own toys - as Mama helped to support him in sitting. From being paralyzed and sedated so long, Mason is now no longer able to sit up by himself and can barely hold his own head up (it is a huge noggin after all). The awake times are wonderful and painful all at the same time; they give us another opportunity to play with our son, but leave us wondering if that was the last time. We, again, pray for a miracle.

We spoke to the doctor again today about Mason. Over the past few days he's had some good times and the bad times seem to not last quite as long. We've been able to turn down his oxygen a bit without too much change in his oxygen saturations - not enough decrease in the oxygen to make a difference in the damage to his lungs, but it's a start, right?? We were able to turn down the nitric oxide without much change. I think I was hoping that she would say that she has seen something she didn't expect; that Mason was doing better than she thought, but those words didn't come. She reiterated that Mason's prognosis is not good. That we will continue to do things to support him, but he likely will not survive. She repeated what the doctor last week said: that she couldn't tell us how long he had, but we can at least keep him comfortable during the time that he has. She did tell us that we should not lose hope because that is what will help us to get through each day, but that Mason's vital signs and blood gases support the same prognosis as last week. Hope is a blessing and a curse. It allows us to keep putting one foot in front of the other, but then can allow us to get knocked down so fast we didn't know what hit us. We, again, pray for a miracle.

We, again, pray for a miracle. May we please have another one?

2010-02-15T15:38:00.001-08:00

Its amazing how we can sit here minute after minute, waiting for the inevitable, planning for the end, but still think about Mason's medical condition and talk about how his electrolytes are doing and whether or not he needs the nitric oxide. Unreal, though it may be, that's some of what we've done today. Mason continues to hang in there with saturations all over the map on 95% oxygen concentration . He is sedated pretty heavily and sleeping much of the day. When he wakes, he is somewhat frustrated that he can't move as he wants to, so he bears down and doesn't let the ventilator breathe for him. This always leads to lower saturations and leaves us watching the numbers to see if they will come up this time, too. If there is any hope, he has to be able to wake up and move without desaturating. Impossible situations.

Over the weekend, the intensivist stopped Mason's potassium chloride for fear that his potassium level was climbing and might get too high. We disagreed knowing that his potassium was actually fine and was leveling out because of the supplement, but didn't really have a say. We knew that they would restart it because his chloride would go too low, we knew that they would restart it because his potassium would go too low, but we have little fight for those types of things. At this point, we can say it was just frustrating, but what we really wanted to say then was "What a stupid idea! Please stop 'taking care' of our son, because you clearly don't know how to do it." As we knew they would be, now that the supplement has been restarted, Mason's electrolytes are back to "normal." Plus, that doctor won't be around for a while, so we're safe for now.

We have made a decision to turn down the Nitric Oxide a little bit today. You might remember this is a gas that helps to dilate Mason's blood vessels and allow his heart to not have to work so hard to get the blood into the lungs to be oxygenated. You might also remember that Mason is on Viagra which does the same thing, so turning it down will hopefully effect no change. Our idea, along with the attending intensivist this week, is to remove things that are doing nothing to help Mason along. More medication is not always good, especially if it does nothing.

We continue our vigil taking care of our son as best as we can. We pray for peace and comfort for him as well as those who love him.

2010-02-14T11:56:00.000-08:00

I don't know how, but somehow Mason is still with us. He continues to fight and sometimes has good times and sometimes has bad times. He still awakens and interacts with us. He still awakens and wants that wretched wet washcloth - and it better be just the right temperature and just the right wetness or he tells us to do it again. Don't know where he got to be so opinionated and stubborn... He continues to show us his fighting spirit as we stand by him, comfort him, and treasure every precious moment with him. Our hearts break several times a day watching him, but are also lifted at times when he seems to be comfortable and secure with our words and touch. We are doing everything we can to keep him comfortable and at peace. We still don't know when, we are just holding on to each other making it through moment by moment. Thank you for your continued words of support, prayers for a miracle, and comfort from afar.

2010-02-11T20:24:00.000-08:00

Mason continues to put up a valiant fight despite low saturations. He had a relatively comfortable day and was able to sit up in my arms as I crawled into his crib a couple of times. We don't know how much longer we have with him...hours, days, maybe even, though very unlikely, months. We treasure every cuddle, every smile, every reach for his wet washcloth. We are in an impossible situation and it helps make it just a little less crappy knowing that you are all out there praying for us and thinking of us. We really appreciate all of the comments you've posted. Thank you for loving Mason and supporting us.

2010-02-10T17:30:00.000-08:00

Our hearts have broken with the most recent turn of events. The doctors have nothing more they can do for Mason as what we have been needing to do (100% oxygen concentration and high support from the ventilator) have likely damaged Mason's lungs further. We are now getting ready to say good-bye to our little boy. We have decided to support him and keep him comfortable, but will not resuscitate him when his body finally decides it has fought the good fight and can fight no more. Thank you for all of your kind words, your prayers, and your support. We have truly appreciated it!

Another Down Turn

2010-02-10T14:17:00.000-08:00

Detox worked, but Mason's lungs are not working well. Please keep us in your thoughts and prayers as we have some very, very difficult decisions to make.

Wake Up, Day 2: The Fight Begins

2010-02-09T21:07:00.000-08:00

Up until about 3:30 this afternoon, Mason really did well with his wake up. He was groggy when he awoke, coughed a little bit, and the allowed the ventilator to keep working and fell back asleep. We were so thankful for the gradual awakening.

However, at about 3:30, after turning his Propofol down to 30 mcg/kg/min, things started moving and shaking. Well, really, Mason started moving and shaking. He started desaturating fairly regularly because of either mucus plugs and/or agitation. We have been able to suction quite a bit of gunk out of his lungs, but it feels like we're really not making any headway. He continues to desaturate every time he wakes up and comes back up with suctioning and all out fatigue. Mason has also been quite agitated and is not letting the ventilator breathe well for him. He isn't pushing back against the air coming in, which is much better than before, but is still "fighting" the vent as he doesn't let the air in. It seems that the 30 of the Propofol may just be too low on his current dose of Ativan and Methadone.

So, since we're now in the night shift and there's fewer people around to be there to help him out, we have gone back up to 60 on the Propofol and increased his Ativan. We'll just have to try again tomorrow to resume the Propofol wean.

Prayer requests: 1) that we can find the right dose of the Ativan and Methadone to allow us to resume weaning the Propofol without agitation, and 2) that we can gain ground and get the mucus out to allow his lungs to function better.

Wake Up, Part 2

2010-02-09T12:52:00.000-08:00

Mason had a fairly good night overall last night with a couple of blips. As we neared shift change, you may remember, he started to move a bit more and was not quite as calm. Well, as it turns out, one of his IV thingymajiggers was leaking so he wasn't getting the full dose of either his paralytic or his Propofol. Once that was figured out, he was calm most of the rest of the night. At one point apparently, his heart rate was staying up again, so they almost increased his dose of his Methadone. Thankfully, he self corrected and was able to continue the Propofol wean without increases in his other meds. He did have one major event lasting about 30-45 minutes in which his saturations dropped and he wasn't moving air well in his left lung. Thanks to our favorite Attending who happened to be on last night, the mucus plug was moved and he resumed doing ok.

This morning at about 9:30 or so, the paralytic was stopped. About an hour or so later, he started doing some "hula" -- that's the best way I can describe how he moves when he's waking from the paralytic; he moves from the belly out. Then at about 11:15 or so, he opened his eyes to the world again. He came up coughing and helping to move the gunk out of his lungs which is a really good sign. The best news so far is that he has not fought the vent once yet. He has had a little lower saturations when awake, but has not pushed back against the air coming in!! For this, we are extremely thankful. His Propofol was turned down again around 12:00 so he's now on 45 mcg/kg/min. No increases in Ativan or Methadone yet which is really, really good.

We're really not wanting to jinx it, so we are thankful for what we've seen, but prepared for a time when he does start fighting.

Wake Up, Day 1: More Lessons for Mama

2010-02-08T20:08:00.001-08:00

Mason seems to be tolerating his wean of the Propofol fairly well. He's had 3 decreases without much change overall. After the first wean, his heart rate actually went down, his saturations went up, and he was overall much more relaxed than this morning. Slow and steady seems to be working well for Mason.

During the course of the day, naturally, we had to try to rock the boat a little (or in the words of the respiratory therapist, flip the boat over). Because Mason responded so well to lying him on his sides and doing some bag suctioning/postural drainage, they thought it might be good to move his gunk a little more and put him mostly on his stomach and do a little chest physical therapy on his back. This certainly loosened up some of the stuff in his lungs, but unfortunately took a lot out of him as well. Before doing this, his heart rate was back into the low 100's and his saturations were up. Afterward, he eventually relaxed again with his heart rate in the 118 range, but his saturations haven't been as great. Then, around 6:30 or so, his saturations went down and his heart rate went up. Not sure why, maybe it was his way of telling our favorite nurse that she can't leave. Picky little guy, ain't he??

It was nice for us to see Mason totally relaxed again. I can't remember the last time I've seen his heart rate so low or his saturations so good for any length of time. I am very hopeful that we can continue this wean, monitor his sedation, and help him make the transition off of the IV medication. While I was a little disappointed not to see my little man awake today, I am glad for the slow and steady approach. Hasn't Mason been trying all along to teach us about patience???

Wake Up, Part 1

2010-02-08T12:49:00.001-08:00

Well, this morning did not include the dramatic wake up that I thought it would. The plan from the attending intensivist is much more slow and subtle than that - a good thing for Mason. I thought I would give an update anyway since I know many, many are keeping us in their thoughts and prayers today. Here's what I know so far:

Mason did have a busy morning and a little trouble with his saturations as a result. I did end up going home last night and had a great, restful night's sleep. I think it was the right thing to do. When I got here this morning, his saturations were down after a diaper change - again with the not liking a poopie diaper... Just after he was repositioned, the Echo tech came by and did a heart ultrasound for about 20-30 minutes - don't know the results yet. Just after the Echo tech left, the PICC nurse came in and changed the dressing on his remaining PICC. Not surprisingly, after all of that, Mason had a very difficult time with his saturations, so we called the respiratory therapist and she and Mason's nurse "bag suctioned" him. I'm not sure if I've explained this before, but basically, they disconnect him from the vent, hook him up to the "bag" (you've seen it on ER as they're wheeling the patient back, basically it is a big air bag that you squeeze to give the patient breaths), and every once in a while suction out his trach. The idea is that the bag loosens up the gunk so that it is easier to get out with the suction. This time, though, they added some postural drainage to the mix and brought Mason in to a flat position and rolled him to each side while bag suctioning him. It worked really well and allowed them to get a lot of the gunk out of his lungs. Since he was flat, we also took the opportunity to change all of his bedding. Well, as you can imagine all of this activity was pretty rough on Mason and it took a good hour or so for him to recover.

During all that activity this morning, we did not attempt to change anything. At noon, however, the gradual wake up process began. Unlike what we thought, they are not going to take off the paralytic first. Instead, they are going to wean down the Propofol sedative by a certain amount every 3 hours to monitor his sedation under the paralytic and make sure that the ativan and methadone doses are adequate to keep him sedated. That way, if adjustments need to be made, because of the paralytics, we can still avoid fighting the ventilator and being totally agitated causing desaturations while the doses of ativan and methadone are being changed.

So, as of now, we're just doing the wait and see thing. We will just see how he does over the course of the day and night. Mason started on 150 mcg/kg/min of the Propfol, is now down to 135 and will continue to wean down by 15 every 3 hours until it's off. I'm still not quite sure when they will take off the paralytic, but will keep you posted on how things go.

Lying in Wait

2010-02-07T20:26:00.000-08:00

Well, the boat got rocked just a little bit today with Mason's saturations being anywhere from 71% to 91% given the situation and really, the moment, but generally stayed around 80%.

Not great for his lungs, but great for a reminder that he's still fighting in there, Mason has been letting us know in no uncertain terms that he does not like having poopie pants. Every time his diaper would be full, his heart rate would go up and his saturations would go down. As soon as we changed him, heart rate would go down and his saturations would slowly creep back up. He's such an opinionated kid and I love that he's still trying to communicate with us despite being sedated and paralyzed.

Tonight I am full of emotion. I can't decide if I want to go home for 1 more night before the fight begins tomorrow or if I want to stay here with my baby since his saturations haven't been the best today. I am nervous at what we are facing. I am scared of things not going well. I am elated to see my baby again. I am excited to let him start moving. I am dreading the exhaustion that I know is coming as we fight this fight. My heart is filled with love as I look forward to seeing my little boy again tomorrow. In all of our struggles with Mason, the only times I have every felt anywhere close to this way was the night he was born and then again when he was taken off of the ventilator after 9 days and I finally got to hold him. Maybe its time, maybe its distance, maybe the feelings of those days have faded, but for some reason, what I'm feeling tonight seems so much bigger than then. As I read back over what I just wrote, it doesn't even capture what I want to convey. It doesn't describe how I'm feeling, but it's the best I can do. How is it possible to have this much happiness and this much dread all at the same time?

So, if all goes according to plan tomorrow (ha ha, that's funny!), Mason will have an Echo (heart ultrasound) first thing in the morning to follow up on the yeast fungal infection in his blood - they just want to make sure it hasn't affected his heart at all. Then, after Rounds (that's when all the doctors/residents/med students, etc go to each patient's room and discuss the plan for the day), they will turn off the paralytic. At that point, things will start moving. A respiratory therapist will be available to play with the settings in his ventilator to find something that is as comfortable as possible to decrease the chance that Mason will fight the vent, but be able to be safe (thanks, Erin, for the setting suggestions from Joey's experience on the vent!!), the doctor will be available to assess his success, his nurse will be right here to make sure he stays safe, and Mama and Papa will be working hard to keep Mason entertained and try to help him avoid fighting the ventilator. Bill and I expect this will be a 24 hour job because there's no way Mason knows day from night at this point. We expect that he will take some breaks and sleep, but more than likely it will be short bursts of sleep and short bursts of activity. We will sleep in shifts as we need to for as long as it takes to help Mason get through this -- he has to get through this!!!

So, here are the requests for tonight: 1) that the detox was successful and we can adequately maintain Mason's sedation with the medications after the paralytic is removed, and 2) that Mason's struggle upon waking tomorrow is temporary and we can allow him to stay awake so he can get better.

Don't Rock the Boat

2010-02-06T19:22:00.000-08:00

I think that should be the mantra for the next couple of days. We are getting closer and closer to our attempt to wake Mason up from his detox and are trying to be very careful to avoid rocking the boat.

Last night about 2 hours after I posted the blog, Mason started to saturate better. By the time I went to bed (yes, I did stay with him in the hospital last night), he was back to the mid 80's for saturations and his heart rate was coming down. Overnight, the nurse was careful not to rock the boat and only did what was absolutely necessary so that he got some good rest from the events of the very busy previous day. With no real "events" of the night, I was able to get some sleep, too. Rare, but possible in the hospital.

This morning, we changed Mason's trach again because the last one was not sealing well in his windpipe. This one has a better seal and doesn't leak air around it nearly as much. Immediately after changing it the volume of air in Mason's lungs improved and his saturations went up. He continued to have a better day than yesterday with a few desaturations into the 70's. It continues to take him quite a long time to recover, but eventually, he still gets his saturations up into the 80's and has been there most of the day.

The detox part of his sedation/paralysis is most likely done today. The drugs (remember the 7 narcotics and sedatives he was on??) are most likely out of his system, but we are giving him a couple of extra days of rest before trying to wake him up on Monday. The doctors started a little bit of Ativan (one of the 7) to help with his sedation in hopes that by Monday, his body will have some sedative in him and he can slowly wake up with the removal of the paralytic and the Propofol. Some sedation remains necessary as we wake him up because the pressure of the air being blown into his lungs is very uncomfortable. He will likely fight it, we just hope he gets used to it and doesn't require larger and larger doses of the medications.

So, here are my requests for directed prayer for those of you who like to pray for something specific: 1) That Mason continues to be able to rest without incident tomorrow and 2) that when we attempt to awaken Mason on Monday, his struggle is temporary and that the dose of the Ativan he is given will be sufficient to help keep him calm.

That Bread Thing

2010-02-05T19:19:00.000-08:00

Today has been another rough day for Mason and for Mama and Papa. Mason has had lower saturations most of the day (hanging around 78-80%, but down as low as 71 and up as high as 87). His fever has been fairly controlled today, hanging around 99 or so most of the day. We tried lasix again which helped his saturations for a while, but then after turning him at noon (we do so every few hours to avoid bed sores), they went down again and have stayed down most of the day.

The blood culture from one of his PICC lines did come back with a positive fungal infection - there was yeast in the blood. So, things got moving to see if there was yeast anywhere else in his body. He had a urinalysis that will tell us if we need to look at his kidneys; results yet. He also had an eye exam to make sure he didn't have fungus in his eyes. I didn't know it could even go there, but guess it can. The good news is that there was no fungus in his eyes, so it looks like there's a strong possibility the yeast is only where the PICC line was - yes that was pulled out today to avoid spreading the yeast.

We are glad to know that there is something to fight, and are hoping and praying that the medication that they started yesterday will fight it. But we remain so very worried about our very sick little boy. His oxygen saturations continue to go down a little bit every day which scares us a lot. Maybe it's the yeast, maybe it's the paralysis, maybe it's the detox. We just hope with every fiber of our being that it is not his lungs failing to work. Thank you for all the prayers and words of support and encouragement. We lean on them heavily.

Trying to Find the Light and the Hope

2010-02-04T20:53:00.000-08:00

Many of you will be very happy to know that I am writing this from home getting ready to sleep in my own bed for the 2nd night in a row. I do have to say it is nice to sleep in my own bed!!

Bill and I have been on the worst end of our Mason roller coaster since the NICU and have been struggling to find light in the dark and hope in the despair. Thankfully, today Mason's breathing and sedation were stable and we felt it was once again ok to leave the PICU so that we could get another night of good sleep. I once again apologize for not keeping you all up on the details of the last 36 hours, but I'm sure you won't mind since I really needed to take care of me. So, here's where we've been since the post from yesterday at 10:23 am...

Mason continues to need the increased support from the ventilator (PEEP of 12, rate of 28-30, inspiratory pressure of 26 for those who are interested) and has saturated anywhere from 78% to 95% depending on any number of factors. Yesterday, he required 100% oxygen to hold his saturations, but today they were able to wean him down as low as 80% oxygen concentration while maintaining saturations in the 80's. I heard that during the night last night, his saturations dipped lower into the 70's and they were able to figure out that it was a leak in the balloon seal around his trach. They were able to place a clamp on the tube that helps to keep the seal inflated and solve the problem. Tonight, the ENT doctor came in to see if he could problem solve why this leak continues to be a problem and decided he was going to try another type of trach. They will need to order it, so until it arrives, clamped tubing is doing the trick.

Mason's heart rate has fluctuated between 132 beats/minute to 206 beats/minute (mostly in the 150's), again depending on any number of factors including that he is not totally relaxed under his paralysis and fever. At one point there was a medication error in which he was given 10 mL of a medication instead of his 1 mL dose (thankfully, it was a fairly benign medication with short lived effects) and his heart rate went up over 200 beats a minute for a short time. With time, some soothing from his Staramama, and some peace and quiet in his room, he was able to slow his heart rate down quite a bit.

He also continued to have a fever, spiking at 103 degrees and coming down as low as just under 99 degrees (he normally runs just under 98). Mason has never really liked being hot! Today the temp stayed up, but did not get quite as high as 103 again. However, his white blood cell count went up again, too indicating that his body is fighting something. He's continued to get blood drawn daily to determine if there's a blood infection, but those cultures continue to come back negative. Today, to cover all bases, they sent off a bunch more cultures to test for everything under the sun just to be on the safe side. It's possible that his fever is in response to the withdrawal he's going through with this detox process, but they want to be ultra careful not to miss something that could be factoring in. They've started him on yet another medication to fight infection, but this time instead of another antibiotic, it's an antifungal. If he is growing some kind of infection, I'm pretty sure it doesn't stand a chance with all they're throwing at it!

Bill and I have been pretty worried through all of this change with need for increased support from the ventilator, continued fever, high heart rate, etc. Apparently, we're not the only ones. The team of intensivists meet weekly to discuss patients and come up with game plans for those patients. Apparently, Mason has been taking up quite a bit of those conversations. As our favorite intensivist puts it "there's no book on how to treat Mason." They've been putting all of their heads together, calling friends and colleagues around the country, and making sure that they are all on the same page with how to move forward. They have been trying really hard to present a united support for the current plan which is really good for us. They have time alone to hash out all of their support for and reservations about the plans, come up with the best option, and support it fully. That way, when they change every week, there's continuity in the plan. Really helps us!

**Warning, you may need a tissue if you read on.

Yesterday, after the physicians' meeting, the social worker came to our room and told us that the attending this week wanted to talk to us and give us an update of their conversation as well as a check in to let us know how things are going. I know enough about the medical world to know that if the social worker puts together the meeting, there's going to be emotion involved. Given that this meeting happened the day after Mason had another of his "crashes" and was now on more support, I knew this wasn't going to be a light hearted meeting. I was right. As Bill put it, this was the warm up meeting for the potential to have to make decisions. The doctors are running out of options. If Mason wakes up from this detox and continues to be very agitated to the point that he is suffering or not safe with is saturations, they need to know from us how much we want to do -- how long we want to continue to let him be agitated or risk potentially fatal infection/complications by re-sedating/paralyzing him for a long time. We have not made any decisions and won't need to until the time comes, if it comes, but they wanted us to know that that time might come.

Right now, it is difficult to find light in the dark, to find hope in the despair, but we are trying. We have not had to face this type of situation since the NICU nearly 2 years ago and really only a couple of times then. We don't know what tomorrow or next week holds. We don't know what is going to happen between now and when they take Mason off of the paralytic (likely this weekend - remember, the detox is at least 5 days). We don't know what decisions we will be faced with. We are holding on to each other to get through this, to try to find the light and the hope. We are comforted in the times that Mason appears comfortable and his vital signs are ok. We are comforted as we hold on to each other for support. We are comforted in knowing that so many are thinking positive thoughts, praying, and loving us from near and far. Thank you for providing that comfort!

A Turn For the Worse

2010-02-03T10:23:00.000-08:00

Wow! We've had a rough 24 hours. When I finally posted the blog yesterday, things were looking up. We were hopeful that the Propofol dosage would level out and that Mason would stay sedated and ride out the rapid detox. Unfortunately, Mason continues to get doses of medication that would put down a horse and still awakened and pushed back against the ventilator as it tried to give him breaths and with the Propofol, there's a limit to how much he can get. They tried different ventilator settings that were supposed to be more comfortable for Mason, but he ended up working too hard and didn't get enough air. So, in the words of the attending intensivist who started this treatment: "It's clear the treatment isn't working like we planned." They think that the mega doses of the sedatives and narcotics have make him hyper anxious and hyper reactive so that any stimulus puts his mind into a tailspin of agitation and as is his nature, he fights back. They still think it is worth continuing, he needs to detox from those medications so that his body and brain can restart and hopefully go back to normal for him. We just need to come up with a way to help Mason stay relaxed so that the ventilator can do it's job for his lungs while he detox's from the medications. The only answer that we can come up with is to re-paralyze him. So, at about 6:30 last night, they started the paralytic medication and Mason no longer was allowed to wake up and fight the ventilator.

About an hour after starting the paralytic last night, Mason's saturations tanked to the about 69-70% despite everything we tried to do - increase the oxygen, re-position him, suction him, bag him, etc. On xray it looked like the middle lobe of his right lung had more stuff in it, so they called the pulmonologist again and did another emergency bronchoscopy. While the pulmonologist was setting up the bronchoscope, another respiratory therapist (the one I fought with during the last hospitalization, in fact), came in and tried one more thing -- increasing the pressure in Mason's lungs as he bagged in more air. That did the trick!! So, the doctors determined that putting Mason on the paralytic took away whatever ability he had to keep the air sacs (alveoli) in his lungs open and ready to take in air. Increasing the pressure re-opened them and allowed his saturations to come up. Unfortunately, we can't bag him with increased pressure all day and all night. So, they continued with the bronchoscope to see if there was something else going on that could help to explain it. Good news: Mason's airways looked good and there was a little fluid on his lungs. Bad news: Mason's airways looked good and there was a little fluid on his lungs. Good and bad news because there was no mucus plug to remove that would be the quick and easy fix, but there was fluid that could be treated with a dose of lasix to help him pee it off.

So, 3 or so hours after it all started, Mason received more diuretic and his ventilator settings changed dramatically to better support him, and he finally started saturating better. So, now, he's on much more ventilator support, more oxygen with lower saturations (still in the 88-91% range for his saturation), and is somewhat sedated and maximally paralyzed. He continues to have a fever, continues to have a high heart rate, and more than likely is still agitated under his paralysis. It is still worth continuing this treatment because the hope is that once his neuroreceptors are reset, he will be able to be awake and not as agitated causing another desaturation.

Bill and I are having a difficult time dealing with all of this right now. Mason is very, very sick. Please re-double your prayers and positive thoughts. We really need it. Please pray that his lungs will tolerate the higher settings without more damage, that he makes it through this detox, and that he comes out better on the other side.

"March"ing on for Meals

2010-02-02T21:10:00.000-08:00

Hello Family & Friends of Christi, Bill & Mason,

Okay, okay, so my titles may not be as creative as Christi's but what can I say . . . she is inspiring on so many levels!

I want to send out a HUGE thank you to all that have signed up for bringing meals to Christi & Bill. Your generosity is overwhelming and really has made this sign up one of the best ever!!

Alas, I am writing again to keep the meals coming. For those of you who didn't get a chance to sign up in February, good news for you! March is WIDE open! So start clicking those dates :)

If any of you have questions, please don't hesitate to email me - my email link is found on the right side of this blog.

THANK YOU AGAIN AND AGAIN!

Erin Van Kleek

Sorry!

2010-02-02T10:45:00.000-08:00

I apologize to those of you who check this blog every night or morning for the latest updates. I just couldn't get to it last night. Yesterday was quite an up and down day for us as Mason continued to struggle with his withdrawals, his fever, his sedation, and waking up frantic every hour or so. The night before was very difficult for the same reasons, but with the addition for horrible diarrhea from who knows what. Every time we changed him, he awoke with a start and decided that breathing was overrated. Very challenging for him, for his nurse, and for his mama. I think all told, I got about 2 hours of sleep when they finally knocked him out with a major anesthesia type drug. Which brings me to the up part of the day...

The doctors have put their heads together and are trying something with Mason that hasn't been done at Doernbecher ever before, but is used in other hospitals around the country including one in Cleveland where his current attending intensivist did her training - Rapid detoxification under Propofol sedation. Propofol is a drug that is commonly used with medical procedures or surgeries. It is short acting and short lasting (meaning it takes effect immediately, but doesn't last long), it knocks a person out so that they don't feel anything, and it doesn't act in the same ways as Mason's other medications to help him through this whole process. All told, Mason was on 7 different constant medications to keep him sedated (IV Versed, Fentanyl, and Dexmedetomidine, by g-tube Methadone, Ativan, and Neurontin, and a Clonidine patch), he also used a couple of different medications as needed to help with the breakthrough (IV benadryl and by g-tube Tylenol and Motrin). The current theory is that because of the extremely high doses required of each of them, his system was overwhelmed and just shut down, blocking their effectiveness. What was more, he was having difficulty with the wean of the Fentanyl and Versed causing him to need more of the other medications and causing some withdrawal symptoms. So, at this point, they have stopped all of his sedation and pain medication except the Propofol and have that constantly running by IV. So far, he has tolerated it like the other medications when they first started -- he has needed higher doses than expected, but when it works, it works well. The good news is that starting this morning, he has not had any major desaturation spells when he wakes up. I remain hopeful that this will work, but guarded just in case it doesn't. I don't really know what the next option is, but am glad that the doctors are thinking outside the box for our little guy who makes his own rules.

This Sucks! *warning, uncensored thoughts and feelings from a worn out Mama

2010-01-31T17:47:00.001-08:00

Sorry, no catchy title, no sugar coating, no positive spin. This just plain sucks! Mason is still going through pretty significant withdrawals causing him to be agitated most of the time he is awake. He did have a bit of time today when he was once again up in the chair and was somewhat interactive, but otherwise, we've kept him down with drugs. Unfortunately, it's a Catch 22 - the more boluses of Versed and Fentanyl we give to help keep him comfortable, the long lasting the withdrawal will be. This sucks! We did gain a little understanding from the attending physician today that helps us to know what to expect and what we're in for. We can expect this to last anywhere from a week to a few weeks depending on Mason (you know, the guy who makes his own rules...) and it's going to be very difficult for us to watch. It is very hard to not be able to take away his discomfort, to have to restrain his arms so that he doesn't pull on his trach stuff, to know that restraining him pisses him off even more, and to jump to our feet every time he wakes up to try to soothe him with empty words, his pacifier, or his wet washcloth. This sucks! Amazingly, it is not difficult to see the glassed over look in his eyes, after all, he is in a drug induced stupor. In fact, it's a little comforting knowing that he's too gorked out to remember this in the long run. Sometimes I wish I could have what he's having just so that I don't have to remember.

I have to remind myself that there is some good in all of this.

Mason is much more stable now than he was a few weeks ago. He is actually now making progress instead of getting worse and worse. I now look forward to tomorrow almost knowing that we are getting closer to the day when he's better instead of dreading what will happen.
We have been able to work through the first couple of days in this detox journey with the doctor who helped us make some decisions during Mason's first week in the PICU. We are so lucky to have her here when we most need her.
Bill and I have an incredible support network of friends, family, and caregivers around here who are helping to take care of us when we have so little to do it ourselves. We have dinners coming nearly every night, I have a bunch of donated vacation hours so that I don't have to stress about going to work, but can if I need a "break." Things at work are once again being taken care of for me so that I don't have to think about it if I don't want to. Nurses, doctors, and respiratory therapists with whom we have worked regularly check in on us to see how Mason is doing and how we are holding up.
Most of all, there is an incredible amount of praying going on for Mason. I truly believe that this is what is keeping him going - I know it's what keeps me going!

Yes, this totally sucks, but thankfully, there are tangible things I can think about to help lift my spirits and keep me from dwelling on the totally sucky part!

Wakey, Wakey, Just a Little Shakey

2010-01-30T19:54:00.000-08:00

Last night was a rough night, and I'm not sure tonight will be any better. Withdrawals are tough and not having enough sedative on board makes it tougher. Mason was up most of the night last night a movin' and a shakin' nearly every hour. Clearly the paralytics were not working, and unfortunately, the sedative dose was not sufficient to help him stay relaxed. So, today, we talked to the doctors about cutting out the paralytic all together and figuring out a way that he can be a little more relaxed. So, without further ado, Mason's paralytic was turned off at about 2:30 pm today. Starting at about 3 pm, he woke up. Overall, he's been doing well, but has had a couple of times when he became really agitated and has desaturated into the 60's. He has needed 100% oxygen since waking up because of those times when he becomes agitated. Thankfully, when he is calm and sedated, he saturates in the mid to high 80's and appears very comfortable. We have needed to give him boluses of Versed nearly every hour to help him stay comfortable as his tolerance lasts about that long. After resting for a bit, though, he is ready to go again. So, after lying down and being paralyzed for 3 weeks, Mason was finally sitting up with support and able to read a book with Staramama, watch TV with Mama and Papa, and visit with the people around him. I even was able to hold him for about an hour during one of his sedative induced breaks (it was quite the sight to see, Mama propped up by pillows in the crib holding a very tuckered out and drugged Mason).

We talked with the doctors quite a bit today about his sedative levels and he is going to go up on his Neurontin in hopes that the sleepiness side effect will help Mason to get through some of his withdrawal and getting used to the trach. If it doesn't help immediately, it should be an interesting night with lots of wakeful spells and hopefully an hour or so break every now and then for a little sleep. I gotta say, though, ITS TOTALLY WORTH IT!!!!

Sucking on that wet towel during one of his awake times.

And We're Withdrawing...

2010-01-29T19:31:00.000-08:00

Really, today was just about like any other day, but did show some evidence of drug withdrawal. He had some ups, some downs, more time off the paralytic, and a fever that continues to come and go.

It appears that one of the cultures from Mason's lungs has started growing a bug. It is a bug that he has grown before (pseudomonas) and is susceptible to the antibiotic that he's on. It's possible that more or different bacteria will grow in the cultures that are still out, but at least for now we have something to fight. Mason's going to be on the antibiotic for at least 7 days which will hopefully help his fight.

Mason continues to need more oxygen than they'd like him to be on, but that, too ebbs and flows. Generally, he's needing somewhere in the 70's for oxygen concentration and holds his saturations in the 80's. There was a time when he was on 49% oxygen shortly before the fevers started, so I'm hopeful that after we kick this infection, he'll be able to resume needing less oxygen.

Today's paralytic holiday went fairly well for about an hour. Unfortunately, Mason's withdrawal from his narcotics has made him a little more agitated, so he's grabbing at whatever he can find when he reaches his limit. We could tell today he really wanted to rest after being awake for a while, but unfortunately, his agitation would not let him. So, we ended up giving him a bolus of the sedative to calm him down. I'm not sure if it was the sound of the pump starting to push it in or if the drug really hit him that fast, but it seemed right after the nurse hit go, Mason settled down and was able to rest. It would be really nice if we could keep him really sedated while he's off of his paralytic because he really saturates much better. Guess it's just more trial and error. What was really nice to see during his time off of the paralytic today was that he was able to "cough" up some of the goo in his lungs. Yet another reinforcement that we really need to find a way to allow him to be able to move.

The attending intensivist came in toward the end of the day today to give a "week in review" type of assessment. Basically, the gist of the conversation was that although he hasn't progressed off of the paralytics like they would have liked, they are seeing baby steps of progress in terms of his stability, his sedation, and his tolerance for food in his gut. I reiterated with him that Mason has always taught and re-taught the lesson of patience. Unfortunately, my memory is short and I must keep learning. Good thing his a persistent teacher.

Ooey, Gooey, and Gone (for that moment, anyway)

2010-01-28T19:27:00.000-08:00

Overall, I'd say that today was a relatively good day. Mason's right lung looked better on xray, the fever he'd spiked again last night seemed to have subsided again, and he decided at about 9:40 that it was time to wake up (the paralytics had not even been turned off yet). Once again, his paralytic holiday started off rough, but went well for quite a while. The pulmonologist came down and did another broncoscopy to get a better look at Mason's airways while he was breathing on his own. Not surprisingly, he did find that Mason does collapse his airway a little bit when he breathes, but thankfully, not too badly. Soon after entering Mason's airway, the scope came upon some ooey, gooey, slimy gunk. It was likely part of the reason that Mason's needed a bit more oxygen over the last couple of days and might be an indication of what's causing his fevers. The gunk was so bad that it actually clogged up the scope a couple of different times when the pulmonologist tried to suction it out. Really gross! Thankfully, between the scope suction and the regular suction, they got most of it out and Mason's saturations went up a bit.

The rest of the day, Mason has been bouncing back and forth between asleep and awake. Randomly, he will open his eyes and freak out just a little bit. Fortunately, he does calm to my voice reassuring him that everything's ok. He's still on the paralytic, but they've cut his Fentanyl in half to begin his wean off of the narcotic. Last night, they started him on a new medication that will help his wean off of the narcotic and sedatives as they move to waking him up - Neurontin. It is a non-narcotic pain medication that works in a different way, but still causes some sleepiness so that he will have some sedative effect. Hopefully, with the addition of this and the methadone and ativan, he can get off of the IV drips and continue his progress toward waking up and getting slowly better.

I think Mason will have his first trach tube change tomorrow. It will be a true test of how well his surgical site has healed and how secure his new airway really is. I am hoping for good healing over the last 10 days so that we can begin to challenge him more off of the paralytic. It would be great to allow him to stay awake as much as he wants instead of how much we are willing to have him awake. More awake means a whole bunch of things for him including processing food better, maybe less sedation medication, and another baby step toward that day way off in the future when we can think about returning home.

Professor Mason - School Is In Session

2010-01-27T20:24:00.000-08:00

Hmmm...I'm trying to think of a catchy title for today's events, but it's hard to categorize. Maybe it will come to be as I write.

I awoke to Mason doing fairly well lying on his left side, 65% oxygen concentration, 85% saturation. Pretty good. His fever had broken in the night and his temperature was staying in the 98 degree range. Rounds were fairly uneventful other than his right lung was less inflated and generally didn't look happy on xray. Crap! We planned on doing the paralytic holiday after 10 and planned on today being a relatively ok day. Well, that's what we get for planning!

Mason had other ideas. His lungs decided to act up a bit again after being on his left side for a couple of hours (they change his position every 2 hours to avoid getting bed sores). His saturations went down and despite ventilator changes, a position change, and some suctioning, they stayed down in the high 70's/low 80's for a couple of hours. After about an hour and a half, Mason decided to move a bit (despite being on the paralytics) and evidently loosened up whatever mucus plug was limiting his oxygen flow. The suctioning after his little dance did produce some gunk that we were able to remove. Unfortunately, the more he stays down, the more mucus plugs will happen. I just hope we are able to get them each time so that he can continue to get better overall and we don't see his lungs deflate again. Tomorrow, they are going to repeat the brochoscopy, this time while he is off of the paralytic, to see how his lungs do when he's breathing on his own.

Oh, I forgot, there was a big change discussed during rounds. Once again, Mason's blood count was down so he got another transfusion. It was clear that the low blood count was affecting him because between that and the removal of the mucus plug, he returned to his current "normal" and was ready for a paralytic holiday again around 4 pm. Once again, he did well with the holiday and was able to breathe on his own with the CPAP support from the ventilator. He did not saturate quite as well as previous times, but did not work as hard either. He did end up pooping himself out after a couple of hours and fell asleep without the paralytics on board. While relaxed and asleep, he did even better and maintained his saturations in the mid 80's. Unfortunately, Mama had a bright idea that would surely help his saturations improve -- get him in a better position so that there wouldn't be such a big leak in his trach (in certain positions, air leaks around the tube itself, so it is less efficient). Real bright idea!! It ended up that I startled him, woke him up, and sent him into a small panic over what was happening. When that happens, he starts fighting the vent and doesn't breathe as well. Luckily, we were able to re-sedate him and re-paralyze him so that his breathing evened out and he could fall back asleep. Real bright idea, Mama!! Ok, Mason, lesson learned. I promise I won't disturb the sleeping baby again!!

All in all, he did well with the holiday, but must have moved around some of those mucus plugs again. We're ending the day similar to how it started, but I'm encouraged by the fact that he was able to pull himself out of it this morning with a little shimmy. I've got it...lessons learned: silly Mama, don't make plans without including Mason, don't poke the sleeping baby, and above all, keep moving!

Just Call Me Spike

2010-01-26T21:55:00.000-08:00

Well, Crap! One of the common problems associated with spending lots of time in the hospital, spending lots of time in the ICU specifically, and having lots of invasive interventions (PICC lines, ventilator, IVs, surgery) is an infection. Looks like Mason's become common. Last night after his evening drug holiday, the nurse took his temperature and it was elevated. He responded well to Tylenol and/or ibuprofen for a bit, but now, no improvement that we can see. He is now at 101.7 degrees, up from the 100.4 it was last night. Crap! They've put him on IV antibiotics just in case, they're running every kind of infection culture they can think of, and once again have the nurses and doctors wearing gowns, gloves, and masks (we'd stopped using the masks about a week and a half ago since he's no longer breathing the same air). So far, we cannot tell what his little body is fighting, but it looks from the blood counts that it is bacterial (specific types of his blood cells are elevated). Crap!

Despite this, he has done fairly well on his drug holidays. Last night's lasted a couple of hours with him being awake for about an hour and today's lasted about 3 hours with about an hour and 15 minutes of awake time. Each time it takes a bit for him to regain his coordination, but each time he becomes a little more coordinated than the time before. Mama is getting a little more used to them as well; I now consider him to be taking long naps in between. Maybe reality, maybe fooling myself, but hey, it works!

Mason's oxygen need has been up, down, and all around. He has times when he's back down to 65%, then times when he needs 85% or so when not on his holidays. It does seem to be related to position as well as how he is feeling otherwise. Now that he's fighting this wretched infection, he needs a little more oxygen. Is this, once again, another lesson in patience? Seriously, child, I'm pretty sure there are easier ways to teach your parents lessons!!! I remain hopeful that the antibiotics will kick in soon and Mason will begin to feel better.

Before I sign off, I do want to make sure Mason has the opportunity to say HAPPY 60th BIRTHDAY, STARAMAMA!!!

Drug Holiday Take 2

2010-01-25T19:28:00.001-08:00

Today we had another attempt at "drug holiday." It took Mason about an hour to wake up this time, but when he did, things got moving. He was able to focus on both Bill and I at different times and was able to put his washcloth in his mouth much better than yesterday. Now, I know, I said last night that we weren't going to offer a wet washcloth to Mason the next time, but we really didn't have a choice. Soon after he awoke, he reached over for his drool rag and wanted to suck on it like his regular wet washcloth. So, we gave in and got it wet for him. He did a great job avoiding the trach this time and didn't knock off the ventilator until the very end of the 2 hour holiday. He was able to soothe himself for most of the time, but when he'd had enough, he'd had enough and it was time to put him back on the paralytic.

They have ordered these "drug holiday's" twice a day. While it's really good for Mason physically, it's really hard on Mama emotionally. It is great to see my little man's eyes, see him recognize me, see him doing his usual tries at self soothing. It is heart wrenching to see him struggle to figure out what's going on and then to see him go back to sleep again. I pray for the day when he can fully wake up, not have to struggle to figure out what's going on, and continue down his path of recovery.

Well, I'd better sign off. Drug Holiday #3 has just begun. I expect I'll be saying "Hi" to my little guy soon.

Meal Baby Sign Ups

2010-01-25T09:18:00.001-08:00

Good Morning Friends & Family,

This is Erin wanting to give you an update on the Meal Baby website. It came to my attention last night that there was an error made in the email invites which delayed the site going out to people. The error should be corrected now! If you still have not received the link or would like to, please email me. Christi attached my email on the right side of this blog.

So many have already signed up but there are still MANY open nights. So please take a peek and sign up today!

Thank you to you all for your incredible support and generosity!!

Erin

A Valiant Effort

2010-01-24T16:47:00.000-08:00

I apologize in advance, but I am not going to do justice to what happened today. I'm still trying to figure it out in my mind and thinking maybe putting down on the blog will help sort it out. Please don't misunderstand, Mason's doing fine, we just had, well, an odd end to the attempt to take him off of the paralytics. A lot of things happened all at once that are challenging to sort out. I'll try to start at the beginning, after all, according to Julie Andrews, its a very good place to start.

So, this morning during rounds, the attending physician was really pleased with the fact that Mason did so well yesterday and through the night. She thought that with the addition of the Clonidine patch, Mason was ready to try to be off of the paralytics for a bit today. Even if he was off for an hour, it would be so good for his body to be able to move some - it would help move fluid, move things through his gut, and keep his joints mobile. We all agreed, it would be good to try, but if it didn't work at anytime, to make sure we protect his new trach site and get him back on the paralytics immediately.

So, after Mama delayed to go home for a bit, the lunch hour came and went, and we were finally all ready, we stopped Mason's paralytics at about 2:10 pm. He started waking up fairly quickly and twitching around as the paralytic wore off. The first thing I noticed was that he stopped drooling - I realize this is kinda weird as a first thing to notice, but you've got to realize, he's had a river of drool despite frequent mouth suctioning because of his paralysis. I was so excited that he could swallow on his own! Mason held Mama's hand while he tried to wake up and figure out what was going on. He never needed his oxygen turned up from 73% and saturated in the high 80's and low 90's. His endurance was quite limited and he fell back asleep after about 10 minutes with the help of a little more sedative. About 5 minutes later, he decided it was time to wake up again. He started twitching again, opening his eyes a little further than the last time and again wanted to hold my hand. His left arm was waving about trying to grab hold of something. After a bit, it was Papa's hand he settled on and did well for another little bit.

About 45 minutes or so after turning off the paralytics, he continued to do the same thing, so Mama and Papa thought we'd try to help soothe him with a pacifier and a wet washcloth (his security blanket). Not a good idea! Mason, in his return to his own independence, got ticked that he couldn't hold the pacifier in or bring the washcloth to his mouth because the suction thing on his ventilator tube was in his way. Mason got ticked and started fighting against the vent helping him breathe and wanted to grab at the suction thing to move it out of the way. Unfortunately, fighting against the ventilator was not helping his cause so the respiratory therapist (RT) came in and turned his oxygen up to 100% (though, he never actually desaturated below the mid 80's) and began to change the settings on the ventilator to make him more comfortable. The RT was able to allow Mason to breathe on his own with a little CPAP support and he was able to maintain his saturations in the mid 80's. When the doctor came in, she was impressed at how strong Mason was (3 of us were fighting his arms to keep the ventilator on the trach) and how well he was doing with only CPAP support. He was working hard to breathe, but maintatining his saturations. The doctor commented on the fact that he was so strong despite being "paralyzed" and sedated for 2.5 weeks. What a fighter!

As we were holding Mason's arms down while the nurse was trying to restart the paralytics, Bill noticed what looked like a blister in Mason's left armpit. Once we turned on the lights (Mason does much better in a dark and quiet environment), we saw that he had 3 large popped blisters and some redness in his armpit, apparently from rubbing against something. We don't know how long this has been there, but are quite certain it was from the dressings around the PICC line in his arm. No wonder he didn't like to be on his sides - either way there would be rubbing of the blisters. So, we urgently called the PICC nurse to come and re-dress the area. It now has no adhesive on it, and is wrapped in gauze instead.

So, at the same time, I'm proud of my little guy and ticked off at the person who wrapped his PICC line and caused his blistering. A rush of emotion from concern for how he was going to do off of the paralytic, excitement that he managed his oxygen saturations without the ventilator settings, heart breaking sympathy for his struggle and pleading eyes while he's not being able to cry because of the trach, fierce anger for the person who hurt my little man when he's already got enough to deal with, and amazement at how well he tolerated his unscheduled "sprint" off of the ventilator. All of that took about an hour and a half. Man, I need a drink!!

Despite all of it, Mason is still doing well. He's saturating at 95% on 70% oxygen, and resting comfortably. I am so proud of my little man's valiant effort!

Post-Trach Day 3

2010-01-23T20:22:00.000-08:00

I am happy and proud to say that Mason had a "good" day today. He has been at 62% oxygen concentration all day and has been saturating in the mid 80s to low 90s most of the day. He took another dip in saturations right around the nursing shift change, but has still been holding fairly steady.

Events of the day: Mason finally got his neck line out today without problem - other than he was quite ticked at the nurse, he got a second PICC line to help with all of his IV medications, and we started yet another medication by way of a patch - Clonidine, a sedative. The idea of the patch is to give Mason a much more steady dose of sedative throughout the day so that he didn't have all the ups and downs with the bursts of sedative that they had to give with all activities. He seems to be tolerating it well and hasn't had as many wakeful spells since starting it.

The best news of the day is that when he does have his times of trying to "wake up" despite the onslaught of medications, he is not desaturating as much. No more "death spells" - yes, that's what they called the major desaturations that Mason had when he would wake and desaturate to the 40% or 20%. We are very thankful for every ounce of progress!

Finally, thank you to Anne and Erin for putting together the MealBaby website (see the post below for details). We are so thankful for and humbled by all the help we have received.

Help Support Mason's Mama & Papa

2010-01-23T16:11:00.000-08:00

Hello Friends and Family of the Robert's Family,

This is not Christi's normal post. We (Erin and Anne) are friends of Christi and Bill's and are helping to coordinate the BEST meal sign up EVER in the history of meal sign ups!!! Please help us in our endeavor.

If you have been following this blog then you know all too well the challenges our dear family faces and that they are looking down the road at a VERY long hospital stay. They have very limited capacity to prepare or store food (practically none). And I am sure we all know how tiresome take out and cafeteria food can get - not to mention expensive.

Therefore, Anne and I have created a website at www.mealbaby.com to ease in the signing up and coordination of bringing meals to Christi and Bill. It has all the information you will need. However, the website can only be accessed by invite only. We have already sent out the email to as many people as we could find addresses for. BUT, if you are someone who reads this blog, would like to help, and has not received a Meal Baby email already, please email Erin at: chadanderinvk@msn.com.

Please include your email in the note and any questions you might have. Anne Zymcowitz is also available for any questions/concerns at anneripley@hotmail.com

We thank you SO very much for your generosity and ongoing support of Christi, Bill, and Mason!!

Sincerely,

Erin & Anne

The Next Phase of Our Lives

2010-01-22T21:21:00.000-08:00

We started the next phase of our lives today with the beginning of our training in how to take care of Mason's trach tube and site. In about an hour and a half, we learned how to take a tube out, put one in, put on the "ties" to keep it in place, suction him, and help him breathe with a bag if necessary. We were reminded that he won't be able to cry, so we have to listen for the ventilator alarm going off to tell us if something isn't going well. We were informed that some kids are sneaky and pop their trachs out to get attention - I told them "Mason won't do that!" At least I hope not!! Really, it's not that much more involved than what we were doing before, just different. Plus, we have a long while to learn how to do it all. We'll get the hang of it fairly quickly, I think.

Mason had a fairly good day with continued sedation and paralytics. He was able to wean down on the oxygen to about 67% at one point, then has needed to go up and down based on his position and how much we do with him (sponge bath, diaper changes, etc). They are wanting to keep him sedated and paralyzed a little longer so that the trach site has a chance to heal a little bit before messing with things. We think it's a pretty good plan. Really, the only real change today was the removal of the heart pressure probe. Since being in the catheterization lab nearly 1 1/2 weeks ago, Mason's had a pressure probe in his heart (via his neck). While it is a risk to keep it in this long, it has given us good information about Mason's desaturations and his response to the heart medications. They have left the sheath through which the probe was placed, but that will be removed tomorrow. Slow and steady with the changes.

Mason has also begun another phase of his life - detoxification. Because he's been on heavy sedatives and a good narcotic for the last 2 weeks, he is going to need a little help weaning off. He was started on Methadone and Ativan today in hopes that he will be able to wean safely off of his Fentanyl, Versed, and Dexmedetomadine. Hopefully we'll be able to do it without any withdrawal symptoms.

Overall, I don't expect major changes over the next few days. Some of the doctors are a little more ambitious about working on waking Mason up and some are more conservative. He's shown us that he does still desaturate when he is not paralyzed or heavily sedated, but not anywhere close to how bad it was before he was intubated or before the trach. With some time and some adjustment, I think he'll be able to get used to the tube and figure out how to swallow and move in this next phase of his life.

A Day of Rest

2010-01-21T18:52:00.001-08:00

Mason did pretty well throughout the night, but did keep his nurse on her toes. He tried really hard to spike a fever and kept his heart rate high, but both are to be expected after a surgery. They continued to keep him sedated and paralyzed last night to allow his little body to rest. Mama and Papa tried to rest, too, but well, let's just say it's difficult when the little guy is being monitored so closely. I'm sure the nurse was entertained as we tossed and turned on the skinnier than a twin bed or on the lined up chairs with a pad over the top - surprisingly, it wasn't that uncomfortable. When the anesthesiologist came in to check Mason this morning, he was startled when I sat up on the lined up chairs - I think "Hey, there's a mom right there" were his exact words.

We are very thankful for the wisdom of Mason's team of doctors. All were in agreement that this should be a day of rest. They did try to wean down on his diuretics, but then after he started to get a little puffy, went back up. Otherwise, he got the foam around his new trach changed and got to sleep all day long. He continues to "wake up" every once in a while and doesn't really like where he is. He desaturated each time he did wake up, but no where near the level he did last week. For this, we are extremely thankful. We are likely going to give him a few more days' rest before challenging him by trying taking off the paralytics. The doctors don't want to take the risk of anything happening to the new trach before it has a chance to start healing. So, the prayer for the next several days: Please let Mason's days and nights be boring so that his body can heal as it needs to!!

Until the next post, I think I'm pretty much going to spend my time staring at my son's face and getting used to the unobstructed features. I know it's an odd statement, but I need to re-learn all the features of my 22 month old son's face. I almost don't recognize him. I am amazed at how much a nasal canula can change how he really looks.

He's Out

2010-01-20T16:16:00.000-08:00

Mason made it out of surgery successfully. It's wonderful to see his face again! Things will still be precarious as he recovers. Please continue to pray that he continues to improve.

He's In

2010-01-20T14:31:00.000-08:00

We gave our kisses and made Mason promise to be good. He's in surgery now. Should take an hour or so. I will keep you posted as we hear.

Here We Go

2010-01-20T13:04:00.000-08:00

Just got word that Mason will be heading to surgery within the hour. Please keep him in your prayers over the next couple of hours as he undergoes this risky procedure. Please pray that the surgeons and anesthesiologists work together well to keep him safe as they remove one airway and replace it with the other.

We're On. No, We're Off. No, We're On Again

2010-01-19T19:38:00.000-08:00

Holy cow! It was hard to keep up with the changing of the wind today, but I am happy to say that we ended the day with the same plan as yesterday. You see, we're used to having new players in this game week after week. We're used to people having their own perspective and changing how the game is played. But, when it comes to a plan when the previous players are so adamant that it needs to happen, please do not change it!

Ok, I'll stop being vague. This morning, during rounds, the team once again discussed Mason's heart issue, his response to the medications, and his "readiness" for surgery. The attending pediatrician (intensivist) was still pretty reluctant to ok Mason for the surgery tomorrow. He said he needed to talk to the ENT (ear nose and throat doctor) who was going to do the surgery. Then, the ENT resident came in to get the surgery consent form signed and said that he usually defers to the intensivist if they don't think a patient is ready for surgery. CRAP!! Soon after, the intensivist came back into the room and said he did not think it would be wise to do the surgery and that waiting until Friday would give him (the doctor) a chance to help Mason get even better. Seriously? What was he going to be able to do that the others could not in the 10 days since Mason was intubated AND why hadn't they done those things before???? Just a couple of questions going through our minds. He did leave a little window for someone to change his mind and said he was going to have a meeting of the minds with the ENT surgeon who would be performing the surgery, the cardiologists, the cardiac anesthesiologist, and the other anesthesiologist to discuss Mason's readiness for surgery and the risks. I'm not exactly sure what happened in that meeting, but from what I gather, the WONDERFUL cardiologist who was on last week came back and weighed in on the discussion and someone asked the intensivist the same questions we had above. When he couldn't come up with a satisfactory answer, he changed his mind and decided that doing the surgery tomorrow is the right plan.

Now, please understand, there is a HUGE risk in doing the surgery tomorrow. Mason is "critically stable," he is not stable by any means. The airway created with the surgery is not as reliable or secure and has a huge risk of problem should it become blocked or dislodged in any way. The tracheostomy and tracheostomy tube are not going to fix Mason. They are not going to help him get off of the ventilator any time in the near future. The reason we are pushing so hard for doing this now is because maybe, just maybe he will tolerate the tube in his neck better than the tube in his mouth. Maybe, just maybe, he will be able to be more awake and not need the paralytics after he heals from the surgery. If is able to be weaned off of the paralytics, maybe, just maybe he will be able to move around some; he will be able to move his joints; he will be able to move fluid out so that he doesn't stay so swollen; he will be able to move his gut so that he doesn't need to continue to be on "Colon Blow"; he will be able to cough so that mucus doesn't get stuck in his airway and continue to deflate the upper lobe of his right lung. Maybe, just maybe he will have a chance to survive this hospitalization and be able to come home again someday.

As far as Mason today, he had a fairly good day again. I was so amazed and excited to wake up this morning and see his saturations in the 90's on an oxygen concentration of 70%. I haven't seen that in I can't remember how long! It was so wonderful!! His pulmonary pressures continued to be high and even raised after they weaned the Nitric Oxide down to 2. He doesn't seem to mind from a saturation perspective, but his heart is having to work harder. They have also realized that his heart is not being as efficient as it should and some of the distention of his belly is because his heart is not pumping enough to get the fluid up his large abdominal vein (inferior vena cava) and out of his system. So, they have given him a new medication to help - for you health care types, it's Milrinone. We are hopeful that this will help to let his belly come back to normal size and he can start to feel a little bit better. As far as the inner belly stuff goes, well, that's about it...he's still going. For a guy who hasn't eaten through his stomach in about 5 days, he sure has a lot of poop!

One last thing I want to mention tonight. I feel blessed! I have an amazing husband who is also a wonderful father, nurse, doctor, respiratory therapist, and champion booger getter. I have an incredible family who supports me in everything I do. And I have extraordinary friends who are doing so much to help me get through this every day. You all know me so well and are taking care of me despite my stubbornness and attempts at fierce independence. I am so grateful for all the love and support you all are showing. Thank you!

Calm In the Storm

2010-01-18T21:06:00.000-08:00

As we make our way toward Wednesday to hopefully have a successful tracheostomy surgery, we are so thankful for days when really nothing happens. It doesn't make for interesting reading, but it makes for calm in our storm.

We were able to wean Mason's nitric oxide to 3 today with so so results. As he continues to get the GoLytely (aka Colon Blow), he is moving stuff through his stomach so fast that it is possible his medications are not getting fully absorbed. As such, he may not tolerate weaning the nitric as well as he would otherwise. The PICU doctors are really pushing for getting off of the nitric oxide before surgery, but the cardiologists agree that if he needs it, he needs it. Until he becomes truly "stable" and we see what his pulmonary hypertension does while stable, we cannot know whether or not he can be off of the nitric.

Once again, until about 5:00 this evening, he did well with a wean on his oxygen concentration to 65%. His need for more or less oxygen varies throughout the day, and it seems that right around 6am and 5 pm, he needs more consistently. Not sure what the differences are, but we'll continue to pay attention and see if we can help him be more steady.

I actually felt secure enough in Mason's stability to return to work for some of the day today - make-up on and everything. It's hard to believe that life continues to go on outside of our little PICU room, but somehow it does. I remember feeling this way when I was on bedrest and when Mason was in the hospital. How quickly we become consumed with our own lives! While it was nice to get away from here and return to that "real world" for a bit, it was really hard to concentrate on anything other than wondering how Mason was doing and wondering if today was going to be a "good" day for him. I was so thankful to find out that it was in fact a "good" day. Please pray with me that he has a good night, a good day tomorrow, and that surgery happens as scheduled and is successful!!

Did Someone Say Poop?

2010-01-17T19:28:00.001-08:00

Today was another stable day, at least until about 5:00. Mason did fairly well and he was able to wean down on some of his settings of the ventilator and the nitric oxide as well as go up and down on his oxygen concentration. Overall, a "good" day.

Unfortunately, after about 5:00 pm, after one of his nebulizer treatments to loosen up mucus plugs in Mason's lungs, his saturations went down a bit. This is a common occurrence and after the mucus is suctioned out, normally the saturations come up. Well, need I say it? Mason is not normal. They try to suction, but nothing comes out. So, the saturations stayed lower than we'd like and so we turned up his oxygen concentration. Now, we wait until things get back to Mason's "normal" and he resumes being stable. The good news is that Mason's x-rays this morning and tonight looked better than yesterday. The upper lobe of the right lung is staying open again.

Oh yeah, poop. We've hit the motherload! He's had poop with nearly every diaper and even goes while we're changing him. Forget the wimpy hospital grade diaper wipes, this is a job for washcloths and lots and lots of Desitin. Glad the nurse is here to help take care of it!! This is not a job for 1 person!

Poop and More Poop!

2010-01-16T21:13:00.001-08:00

It took a long time, but the GoLytely was effective. Mason's gut has finally started moving again this afternoon. He feels a lot better and even started saturating a little better after his first poo -- he's gonna kill me when he's a teenager and reads these!

Today was a fairly "good" day with no major changes. We talked the doctors into no changes with his nitric oxide or his ventilator settings today. We didn't want to mess with anything while waiting for poop. The one thing that did change today was medication. Mason was started on another medication that would help him get rid of mucus. His xray this morning showed the upper lobe of his right lung was trying to deflate again. Hopefully this new medication will help to release any mucus plugs that might be forming and allow it to re-inflate once again.

Just a few more days until the trachea surgery. I say a little prayer each night thanking God for allowing us to stay "critically stable. Again, each morning, I ask God to allow Mason to continue to hold "critically stable."

"Critically Stable"

2010-01-15T22:06:00.000-08:00

This morning started off well enough. The doctors are all finally on the same page about needing to do the surgery sooner than later (still not going to happen until Wednesday, though - 3 day weekend an all), the nurses gave me a hard time about not even trying to go to work - what a pessimist I was being, and Mason seemed to be tolerating a wean in his settings. I was really hoping to write a blog tonight announcing that we had an entire day without incident, but no such luck.

We had most of a day without incident, but Mason decided that that would be too boring, so he's got GI issues to deal with. Unfortunately, Mason's belly is getting bigger and bigger despite not eating. He seems to have some sort of blockage that is perhaps causing him some pain. His heart rate has been up, his blood pressure has been up, and he seems to be more fidgety tonight. So, we've started another treatment - GoLytely (also known as "colon blow" in the movies). We are hoping to help his bowels get moving so that he does not continue to have pain from a bloated/distended stomach. Mason had a similar problem after his g-tube surgery in Dec. 2008, but was able to overcome it with reduction in his pain medication. Unfortunately, he cannot get rid of his pain medication and cannot get rid of the sedatives or paralytic so, his little body cannot move things through. We are very hopeful that this treatment will work so that his belly can go back to normal size and Mason can resume becoming stable.

In terms of his breathing and his heart, he has somewhat tolerated weaning down the nitric oxide (now at about 5) and his oxygen (has ranged from 60% to 100% oxygen mixed with air at different points during the day). It seems that he hasn't needed as much support as the vent was giving him, but still needs quite a bit of support. We are hopeful that when his belly gets a little less distended, his breathing, heart rate, and blood pressure will go back to baseline and he can continue to be "critically stable" until his surgery (thanks to our nurse tonight for that phrase!).

Little Bugs Are Gonna Get You - Well, Hopefully Not!!

2010-01-14T18:25:00.000-08:00

Thankfully, things haven't been as crazy today, but they have continued to be hard. This morning, once again, I got up, got dressed in the work clothes, but thought better about putting on make-up. I had every intention of going to work, but needed to wait for rounds to make up my mind completely. It was a good thing I didn't put on make-up this time...Mason decided to spike a fever - 101.1. Not a good sign. Add to that, with huge support of the ventilator, oxygen, and nitric oxide, he just wasn't doing as well as we would expect - really only saturating in the low 90's. He just looked sick. And this was all before rounds started. So much for going to work today!

He got some tylenol and once they did rounds (again with the cardiologist saying let's get the trach ASAP), they decided that they'd better re-start the antibiotics and get all kinds of samples to see if Mason has an infection. I think his nurse was in here for a good hour getting all of the samples - urine, blood from 3 locations (his Swan - pulmonary artery pressure central line, his PICC line and a poke in the leg just in case it was something systemic), and mucus from his lungs. Haven't yet heard if there's anything growing in the cultures, but Mason's fever seems to have already broken. Hope it stays away!!!

Well, overall, they have tried to leave Mason alone today. Other than this morning's events, Mason's nurse has tried to stay out of the room as much as possible and they've done a good job of bundling his treatments and moving him when they need to. He has responded well with a burst of the sedative and hasn't needed really any bursts of the paralytic except when we have had to do big things. He's been a champ - I think he realized that his Mama and Papa needed a little reassuring that today was going to be ok.

With a small drop in his saturations and a small elevation in his pulmonary artery pressure, they have been able to turn down some of the help that they were giving him. He is down to 10 of the nitric oxide - down from 20, and down to 80% oxygen/20% air going into his lungs. This is a lot better for him in the long run as those 2 gases can be toxic in high doses. We are encouraged that there hasn't been a lot of change, but still very very worried that he seems to be staying the same or getting worse at times. We have tried feeding him off and on, but it seems that with the medications, nothing's moving. So, he is getting fed entirely via IV (called total parenteral nutrition - TPN). This is not idea, but until he gets moving and off of the pain medication, nothing's going to move in his gut. Yet another reason for the trach. We are always a step away from any of a number of complications that can happen to a patient as sick as he is and really cannot wait for the trach surgery so that he can start to come off of the paralytic, the sedatives, and the pain medication and start moving around some. It looks like the trach is still on for Wed, with the weekend coming up and a holiday on Monday, looks like there's no way to do it sooner. Please continue to pray that the fever was a fluke and that he continues to tolerate everything they are doing to stabilize him and prepare for the surgery.

I've included a picture of Mason's set up in the PICU. I thought some might want to know what he's going through.

Shortages, Mucus Plugs, and Paralytics

2010-01-13T19:19:00.000-08:00

Oh my, what a day! We started off with me getting all ready for work - make up and everything! The team started rounds in time for me to listen to them and then leave for my meeting, but once they started, it was clear that I would not be able to go to work today. We started of by finding out that the hospital, in fact the nation, has a shortage of the paralytics that Mason needs for his intubation to be successful. So, guess we're going to "wean" the paralytics again today. I knew this was going to be a process and we were going to see more desaturation spells. Who knew how far he'll go or how many. We just knew Bill and I both had to be here for him. As rounds continued, we learned that the cardiologist wants Mason in surgery for his trach/vent ASAP. She feels that his pulmonary pressure is responding to the medications, and the longer we wait, the greater the chance for the complications of lying paralyzed in bed. He also will continue to have a pressure sensor in his neck that goes straight to his heart. The sooner he gets on the trach/vent, the sooner we can remove that and reduce the huge risk for an infection. Man, I would not want to take her on in a debate! Thank you, Dr. Armbsy for advocating so strongly for Mason!

The awakening and desaturation spells started shortly after 9 this morning. We were able to calm him down with reading to him with the first one - he even reached up and turned the pages of the book. Then, he realized he couldn't get up to look at the book and got mad, so we had to give him the quick acting, short lasting paralytic. Luckily, we had enough of that handy, but could we really give him a dose every 30 minutes as he needed it? The nurse quickly realized that she was not going to leave the room all day! We felt so bad for her. Unfortunately, around 9:30, during the 2nd awakening, he started down a desaturation path that led to 3 hours of scary for Mama and Papa. Despite adjusting the ventilator settings and trying to give him extra breaths with the "bag," we just could not keep his saturations higher than about 80%. They did another chest xray and it showed that Mason's right lung had deflated even further because it was just not getting any air. Not a good sign. A bunch of doctors, nurses, and respiratory therapists were moving around the room and the department like a bunch of chickens with their heads cut off trying to do what they could to get Mason to stop desaturating. Bill and I were just standing outside of the room, hoping for the right answer that would help Mason. Scared of what this all might mean. Wondering what was going to happen. After turning him to his right side from his left side, he came up a bit, but not good enough. They were able to scrounge up some longer acting paralytics from the operating room, which helped, too, but again, not good enough. So, they called the pulmonologist to do an emergency brochoscopy to look into Mason's lungs and see what the problem was and determine if there was anything that could be done to help him. After getting the consent form signed, he started the scope and low and behold, he found a bunch of mucus plugs! After several tries, the scope finally sucked out all of them and Mason started saturating better. They did an xray 15 minutes later and his lung was already re-inflating. Yeah!! Oh, I almost forgot the good news: on the advice of our wonderful nephrologist (kidney doctor) who stopped by, we asked the pulmonologist if he thought Mason's trachea (windpipe) would do well with a tracheostomy tube and he was almost giddy talking about how good it looked and how he thought it would do well. We haven't really heard anything positive out of him in the last few months. It was very reassuring!

Unfortunately, later this afternoon, because of the paralytic shortage, we still had to try to take Mason off of the paralytic. He did ok for a while with an increase in his sedatives and pain medication, but then, the sedatives caused his heart rate to go too low, so they needed to decrease that. Not surprisingly, Mason finally awoke, and man, was he unhappy!!! He looked at Mama and Papa and pleaded for help to get the stupid tube out of his mouth. He calmed down with a little butt patting (his favorite) and Mama singing "Twinkle, Twinkle, Little Star" (no one else's favorite), but then needed a blood draw and got really upset again. While it was really wonderful to see him interacting with us, recognizing us, and calming with us, it was heart wrenching to see him hating and fighting what was happening to him. Finally, after nearly pleading with the doctors, they realized what we and the nurses already knew: Mason cannot be off of the paralytics. Our challenge will be having enough supply to last until the pharmacy can get a new shipment (hopefully tomorrow!!). Unbelievable!!

So, we continue to talk about moving forward with the surgery for the trach and vent. We are advocating for sooner than later because we believe that Mason will do better with that than with the tube through his mouth. We know he needs to be stable to survive a surgery and would never want to move forward in any but the optimal conditions, but we are just not sure optimal is any better than now. For now, we are on the surgery schedule for next Wednesday, January 20th. Please pray that Mason stays stable (or has treatable reasons for any unstable episodes) until then.

Not Sure What to Say About Today

2010-01-12T23:22:00.000-08:00

I apologize for not getting this one done earlier, but Mason has kept Mama and Papa on our toes most of the day.

Generally, he had an ok day with some ups and downs. The cardiology team this morning was more encouraging and had some ideas for what might help Mason including going back on the Viagra and starting a new medication that is so specialized we have to have it shipped to our home when we discharge from the hospital. Pharmacies do not carry it. For you pharmacists out there, it's called: bosentan. So far, he tolerated the Viagra well with a little bit of desaturation, but not too bad.

Unfortunately, after the procedure yesterday, the pain and sedative medication all along, and the fact that Mason hasn't moved on his own since Friday, his gut is not moving well. Once again, we've had to stop his feeding so that his gut can catch up. Hopefully, by tomorrow morning, he'll be able to start eating again with the help of our old friend Lactulose.

Mason has been a little more touchy today and even had some tears while the nurse was doing things with his IV and his mouth care. We were able to manage his pain well with the medication, but it was still hard to see our little guy hurting. Given what happened just about an hour ago, I think he was trying to tell us that he just hasn't been feeling good today. Unfortunately, Mason had another spell of sorts today. He desaturated into the 80's and did not respond to the usual intervention of giving him extra breaths with the "bag." They did an emergent xray and found that his right upper lung lobe had deflated and was not moving air like it had with his 5:45 am xray today. Apparently, this is fairly common with intubation and can happen when the tube position is too low. Combine this with his lower lobes not being able to work as well as the stomach was pressing up on it, and it led to lower saturations. Thankfully, the pressure in Mason's heart did not increase with the episode and he's slowly coming back with some changes in the pressure of the ventilator and repositioning.

Just when we think we learn about how to intervene when Mason's in trouble, he throws us a curve ball. This behavior really needs to stop -- I'll be gray by the end of the week if he doesn't knock it off!

A Lot to Process

2010-01-11T22:27:00.001-08:00

Mason had a fairly ok night last night. His nurse was great about giving him a burst dose of his drugs before doing anything with him, so he was able to rest comfortably. Mama rested well, too, not getting out of bed from 10:30 when I hit the hay until about 6 this morning when things got moving. A good night of rest. During the day, while we were waiting for the cath lab, he had some trouble with being uncomfortable, but we were able to give him some pain medication, sedatives, and paralytics to try to keep him comfortable.

We talked to the infectious disease doctor this morning about the bacteria that grew in Mason's lung culture. Unfortunately, she burst our bubble. According to her, if you did a culture 24 hours after anyone was intubated, you would get the same results. The bacteria that came up was not the culprit we were looking for. It was just an easy target. So, the antibiotics were stopped today. It does not make sense to treat Mason with antibiotics when he does not have an active infection. Especially since he is exposed to new bugs everyday he's here.

Mason did get to the catheterization lab at about 4:30 this afternoon. Bill and I took advantage of the time when we couldn't be with Mason and got away for a while. Thank you to those who have given us gift cards! We did a little shopping and had a nice dinner out. We returned just a few minutes before Mason was brought back to his room. It was quite the sight as 2 respiratory therapists, 2 nurses, and a transport person tried to navigate all the equipment back into his room.

After about another hour of waiting for the cardiologist, we were debriefed on what they found. There's really no way to explain what they found without getting technical, so I apologize in advance. Basically, what they found was worse than they thought they would. Normally, the blood pressure in the pulmonary arteries is about 20% of our overall blood pressure. In Mason, they found up to 85% of his overall blood pressure -- not good. Fortunately, his pressure does respond somewhat to therapies that can be applied like concentrated oxygen and nitric oxide. Unfortunately, both of those therapies can be toxic to the lungs if applied for too long or at too high of levels. Once again, we are faced with "the lesser of the evils" type of situation. For now, Mason's heart is working hard trying to compensate for the pulmonary hypertension by pumping a lot of blood through the heart, but in Mason's case, though, "a lot" is relative. Mason has become anemic since having all of the lab tests which doesn't really work well with his heart issue, and can become serious quickly so we are doing a blood transfusion tonight. We are hopeful that having more blood in his system will allow his heart to take a little bit of a break and not have to work so hard. I realize this all can be confusing - we talked to the doctors for quite a while trying to completely understand. The best way I understood it was by way of a math type of equation. First, though, I'll define the terms:

Oxygen delivery = how much the body decides it needs and how much has to be pumped out to the body. This is a set number.
Cardiac output = heart rate and volume of blood being pumped with each contraction of the heart
Oxygen Content = oxygen saturation and hemoglobin (red blood cells)

So, the equation:
oxygen delivery = cardiac output x oxygen content

Since Mason's hemoglobin is low, the oxygen content is low, so the cardiac output has to be higher to get the oxygen delivery that the body needs. We are hoping that if we give the transfusion, then the oxygen content can be higher and the cardiac output can be lower. Thus, a rest for his heart.

This is almost more than we can process in a short amount of time. From what we gathered from the doctors, the best chance Mason has is to let his lungs grow over time. We were again reminded that lung tissue does continue to grow after birth. We have heard that it continues to anywhere from age 4 to age 8. We are hopeful that with time, he can get better. The one thing we do know with almost certainty, though, is that Mason cannot grow under the circumstances that brought him into the hospital - working hard to breathe, losing weight, and being on a high level of constant steroids. So, our answer: we will be moving toward a tracheostomy and ventilator for Mason. When? We have no idea. For how long? We have no idea. Right now, we are still in an acute illness. Mason has to be far more stable and allow the ventilator to work while he is awake and aware of what's going on before we can even think about a trach. We have a very long road ahead of us.

Thank you to everyone who posted a comment on the last blog. Your kind words and support really helped keep our spirits positive today. Thank you!

Sunday, A Day of Rest

2010-01-10T21:33:00.000-08:00

For the most part, that's what Mason got to do today. In fact, the nurse's goal for him today was "rest/recover" -- I think we're finally all getting on the same page!

At about 2 am or so, after yet another major desaturation, the doctors finally agreed to put Mason back on the paralytics and he's been on them ever since. They've been able to turn them down a bit with the addition of another sedative, but realized that paralysis was important for him. It's nice to see him comfortable most of the day. He has done well with the ventilator settings and was able to be weaned down a little bit. At best today, he was needing only 60% oxygen/40% air. I imagine some may be wondering why the % of oxygen is so important, after all, we all breathe oxygen every day. In reality, we only breathe in about 21% oxygen in the air. There's actually a lot of other gas that we breathe in. The more concentrated the oxygen, the harder it is on the lungs (gets a little too technical here), but basically, high concentrations of oxygen can harm Mason's lungs even further - something we REALLY want to avoid. He did great on the lower setting for most of the day, but after several hours, needed to come up a little bit. He continues to rest very comfortably on 70% oxygen/30% air and saturating at 94-95% - perfect saturation for him.

In the next couple of days, we will be investigating a little more of the Why? question. One of the bacterial cultures that has been sent out finally came back indicating that Mason likely has some bacteria growing in his lungs. This may be as a result of the aspiration pneumonias that he had some time ago or it might be just a new thing. We really don't know, but we do know that it should respond to the 2 antibiotics he was started on Monday and Friday. We are hopeful that the bacteria does respond and hopeful that there will be some improvement once it's gone. We are also planning to have Mason's heart looked at in the cardiac catheterization lab early this coming week. They will insert a catheter into his femoral vein and/or artery (in his groin area) and thread it up into the heart. This catheter will be able to measure the pressure in his lungs and his pulmonary arteries to see if he does in fact have heart issues. They will also be able to look at the hole in his heart to see if it is contributing in anyway. The information they get from this study will help to guide our treatment plan moving forward. The procedure does not come without risk, but we have the utmost faith in the skill of the cardiologist doing it.

There are still so many variables and Mason is still so very sick. Please continue to pray that he responds to the treatments that are done and is safe through his procedures.

I have heard that there are many, many people following the blog. I am grateful for every one of your prayers and offerings of support. Its amazing that our little dude has touched so many. Please don't hesitate to leave a comment and let us know you are following along. To do so, click on the word "Comments," leave a message in the box, copy the word that's written, and select "anonymous" if you don't have a Google account. If you do select anonymous, don't forget to write your name in your message. Otherwise, we don't know it's from you!

A Reasonable First Full Day

2010-01-09T21:55:00.000-08:00

Today was Mason's first full day on the ventilator. He had some ups and some downs, but generally tolerated the ventilator well with some heavy sedation. The doctors changed things up a little bit including how the vent. delivered the air, how much/little Mason was able to move his body, and his nutrition.

One of the doctors today talked about how the vent. was delivering air to Mason. The way they set it up gave a constant pressure for lung inflation. They did not think that Mason's lungs would be able to receive a constant volume of air, so they decided not to set it up like that. However, once he was intubated, he surprised them. They found that Mason's lungs were not nearly as stiff as they thought by xray, so they could be pushed with a constant volume inflation. They also theorized that Mason's major desaturations were possibly due to a decrease in volume when he woke up because he would bear down and get really stiff. So, if the vent. delivered a constant volume, it might be able to help him avoid those major desaturations. The good news is that during the day, when he had some paralyzing medication in him, but wasn't fully paralyzed, he would wake and not desaturate! A really good sign! Unfortunately, when they stopped the paralyzing medication all together, he was not as successful. He had 1 more major desaturation. They were able to bring him back up fairly easily and he's now resting comfortably on 85% oxygen/15% air with his heart rate around 100 beats/minute and oxygen saturation of 94%. Pretty good for him! Our goal is ~60% oxygen/40% air and saturation above 95%.

As far as how awake he is, the doctors are trying really hard to allow him to be awake and able to move, but really, really sedated. The more he is able to move on his own, the more he is able to keep his joints moving and avoid fluid buildup in his body. It is also good to allow him to be awake enough to cough. When you're flat on your back with a breathing tube in, congestion tends to set in. If he is awake enough to cough, he can sort of avoid that. Unfortunately, we haven't been successful at allowing him to be that awake, but he did have quite a bit of time today when he could move some, but kept his saturations up. It gave me good hope that this might work after all. Once the paralytic was completely taken away, though, his awoke a little too much and his saturations dropped. Apparently, we all needed to be reminded once again that we need to have patience and take baby steps.

They were also able to start feeding him again. We've fed him overnight just about every night this week, but because of his major desaturations before getting the breathing tube, they would stop his feedings just in case. Because his lung healing all hinges on his growth, it's really great to see him tolerating his food well. Hopefully this trend continues and we can do some other things that will allow him to resume growing.

Well, I continue to be pretty pooped with all that we've been through. I'm going to sign off for now. I'll keep you all posted on our progress. Please continue to pray for healing for Mason's lungs. It is going to take pretty much nothing short of God's Hand to help him get through this.

Night, Night, Baby Boy!

2010-01-08T20:11:00.000-08:00

I'm pretty exhausted from little to no sleep last night and the emotions of today, so I'll be brief. Mason's ventilator tube went in without any problem at around 2:30. He, unfortunately, doesn't like it when he's aware of what's going on and tends to desat because of it. So, they are going to keep him heavily sedated tonight to allow his body to rest and his lungs to get used to the tube. He appears to be resting comfortably with the ventilator doing the breathing for him. Its the least amount of work he's had to do to breathe since leaving the NICU 1.5 years ago.

Had some difficult conversations about the extent of Mason's current acute illness in our meeting today. Looks like we've got a long and difficult road ahead of us. I compare it to how sick he was when he was first born. He is pretty critically ill and the next few weeks to months are going to be important for knowing what his future holds.

Please Pray For Mason

2010-01-08T11:40:00.001-08:00

Mason desaturated every hour last night and has been working much harder to breathe this morning. It is time to give him a break. We have decided to place him on a ventilator as soon as they can get things organized. Please pray for strength for us and rest for Mason.

Treading Water...Now its Time for Tough Decisions

2010-01-07T20:17:00.000-08:00

Well, our magic little pill wasn't so magic. Mason had another episode of desaturation today - getting to be a daily occurrence. Overnight, he had his IV replaced, but didn't really have any desaturations. Then, over the course of a couple of hours, he continued to need more and more help, then hung out with low saturations for a little too long. They turned him back up to 20L of 100% oxygen and he improved. They also gave him some IV lasix and he peed and peed and peed - a total of about 11 ounces in a matter of a couple of hours and another 4 ounces within a few more hours. From then, he improved a bit more. Despite that improvement, we're really not making progress and at this point, we're having some difficult conversations.

Hang on, I'm going technical to explain what happened today...

Viagra:
One of the potential effects of Viagra in this case is that all blood vessels in the body get dilated. In Mason's case, this has the potential to not be a good thing. If blood moves through the lung through the newly dilated vessels and moves through the areas that don't get enough oxygen, the blood doesn't get oxygen. Unfortunately, the heart doesn't know that the blood doesn't have oxygen so it still sends the blood out to the body. That ends up leading to poor oxygen saturations. Well, that's exactly what happened late this morning.

Pulmonary Hypertension:
They were able to repeat the Echo (ultrasound of the heart) and see that he also had blood flowing back and forth between the top 2 chambers of his heart (atria) instead of flowing from the top right to the bottom right and out to his lungs to get oxygen then from the top left to the bottom left and out to the body. So, once again, blood that doesn't have oxygen in it was going out to his body. Double whammy!

We have some clarity:

We know Mason's heart is worse than 2 months ago, so his breathing is worse.
We know that nitric oxide works to help Mason's oxygenation.
We know he can't go home on the nitric oxide gas, so that's not an option.
We know Mason cannot tolerate the Viagra (medication replacement for the Nitric Oxide), so that's not an option.
There's not much else that can be done without looking at assisted breathing (CPAP, ventilator, or tracheostomy with one of these devices).
A time may come soon when Mason will not be able to recover from these episodes, so its time to make some decisions.

Tomorrow, we will be meeting with the cardiology team, the pediatric team, and the pulmonary team to look at our options: CPAP to help with the acute problem, ventilator to help with the acute problem, tracheostomy and ventilator or CPAP to help with the long term problem (the next few years). Once again we are asking for the strength to make the right decisions to allow Mason to have the best quality of life, the best chance for his lungs and his heart to improve, and the best care he can get. Please keep Mason in your prayers tonight.

Long Day Ends With a Smile!

2010-01-06T22:14:00.000-08:00

I'm amazed at how long this day has been, but yet I'm just now feeling like I really need to hit the hay. So, I'll probably be more brief than I should, forgive me.

This morning started at 3:45 am with a "normal" desaturation for Mason. The problem was, he didn't go back to sleep. So, at 4:30, the nurses and I thought we may as well do his daily blood draw so we wouldn't have to awaken him (and me) again at 6 am. Moments after making that decision and just after changing his diaper, Mason decided to give us all another scare. He desaturated significantly to the point that, as we found out tonight, the attending doctor was thinking they would have to place Mason on a ventilator - they had the intubation tray ready outside of our room. They turned his oxygen back up to 20L and 100% oxygen (remember from last night's post, he was down to 14L and 90%). I called Bill at 4:55 am (not a good time for anyone to get a call in the morning) and told him he should come over because Mason's saturations were just not coming up. After hanging up the phone, I realized that Mason had been rubbing his nose quite a bit. So, I looked for boogers. Sure enough, a major blocker in each of his nostrils. 3 of us tried to suction him to get those things out, but to no avail. So, I tried to move them with a cotton swab. I ended up dislodging them, but didn't get them out. Apparently it was enough. Between the increased oxygen, the dislodged boogers, and replacing the water in the oxygen humidifier/heater (not having enough ends up with ice cold air being blown up his nose at a rate of 20 liters per minute -- not comfortable by any means!), something worked and Mason started saturating better. So, by the time that Bill got here, the crisis was averted and we could all get some sleep. Mason slept well after all of this for several hours afterward and started saturating at 100% within a half hour or so and remained that way until they started weaning him down again. Throughout the day, they have continued to wean him and he's now at 8L on 100% oxygen and saturating at 95% while trying to go to sleep.

After talking to the pediatric team and the cardiologists, it was decided that Mason should take a medication that acts like the nitric oxide that has helped him so much. It is a drug that dilates all the vessels in the body to increase blood flow everywhere. The nitric oxide goes directly to his lungs, but isn't really feasible to do at home. So, the next best thing is this drug. It does run the risk of lowering his blood pressure, so they're starting on a small dose and will titrate him up based on his response. If he tolerates it well, and it helps, he will then wean off of the nitric oxide and see how he does. If it ends up working, I'm a little afraid of the sick humor that will ensue as I tell people that my 21 month old son is on Viagra...Go ahead, giggle, you know you want to! It's always better to end the day with a smile on your face!! :-)

Same Stuff, Different Day, Better Outcome (So Far!)

2010-01-05T17:42:00.000-08:00

Today could be described in a nutshell as a repeat of yesterday, just one step closer to artificial breathing help.

Last night went fairly well from Mason's perspective. He slept through the night without too much trouble. From the doctor's perspective, it didn't go as well as she had hoped. We were not able to wean Mason's oxygen concentration down much at all. He was turned down to 85% oxygen/15% air and within 15 minutes started to desaturate. So, his concentration was increased and he did fine for the rest of the night. This morning's labs looked good and things seemed to be stable - not improving, but more importantly, not getting worse. So, I went to work.

Then, about 1:30 (same time as yesterday), I got a call from Bill saying the same thing as yesterday - "he's not holding his saturation, you need to come back." Mason had had an Echo (ultrasound of his heart) at about 12:30 and just seemed to not do well after that. By the time I got back to the hospital at 2:00 (I may have broken a few speeding laws), the team was once again in the room and once again deciding what to do. They had already decided to bring in a CPAP machine, "just in case," and were talking about putting Mason back on Nitric Oxide. For those of you who have been keeping track, this is one of the machines he was on for the 1st 9 days of his life. The gas is not the same as laughing gas, but rather is a gas that helps to dilate the vessels to make moving air around a little easier. As the respiratory therapist was setting up the machine, the cardiology resident came by and said that she would recommend that Mason be put on nitric oxide to help him breathe -- seemed like everyone was on the same page!!

Amazingly, and wonderfully, within 3 minutes of hooking up the machine, Mason's oxygen saturation when from the 70's to 100%. Clearly this treatment was making a difference. You could feel the tension leave the area - ours included. Mason relaxed and clearly found it easier to breathe. You might ask why, if this made such a huge difference, why haven't we done this sooner? In a nutshell, because we didn't know it would help. Mason's heart issue (persistent pulmonary hypertension) has been stable since he was born. They haven't been able to measure the extent of the hypertension in his Echo because it is so mild. So, because it has been so stable and so mild, cardiology believed that he did not need medication to treat it. However, apparently, according to the Echo today, the hypertension has increased some over the last couple of months. So, with that and the fact that Mason was so acutely worse, it was time to try it. And, thank God we did! I believe we were just a short time away from having to make a CPAP vs. ventilator decision when the Nitric was started. I am so thankful for the wisdom of my fantastic husband for asking the question about whether Nitric would help and for that of the providers to support such a great idea!

So, here we are, night 2 in the PICU in a much better place than the night before. Mason is weaning down on his supplemental oxygen; currently on 14L of 90% oxygen/10% air and saturating at 96% -- light years better than the night before. Thank you for all of your support and prayers. We appreciate every one!

When Things Go Wrong...

2010-01-04T18:49:00.000-08:00

...they go really, really wrong. I'm not sure what happened, I'm not sure how things changed so quickly, but they did.

Last night, we finally got the pulse dose steroids started at midnight without too much trouble -- we did have to adjust the IV, but it worked and the steroids went in easily. Mason needed about 9L of oxygen overnight and was barely holding his saturation in the high 80's. Then, this morning, he slept in and around 9 am or so, he started to do well and I was able to turn him down to 6L. After he woke up, he needed more, but just about the same as last night (remember he usually needs much more oxygen during the day than at night). Things stabilized again and around 1 or so, I turned him down to 7L.

While grocery shopping (we need to eat, after all), I called Bill to see what he wanted for lunch and found out that Mason was having a little more trouble keeping his oxygen level up. By the time I got back to the hospital around 2:30, Bill, the entire pediatrics team, the nurse, and the respiratory therapist were in the room. You could just feel the worry emanating from the room - not a good feeling at all! I steeled myself, went in the room and faced the conversation. To say they were worried was an understatement. They had already called the PICU doctor to come up and triage, the respiratory therapist took it upon herself to change how Mason was hooked up to the oxygen and start him on true high flow/CPAP oxygen, and the attending was talking to Bill about what next steps were including PICU, CPAP, and possible ventilator. How could this happen in the hour I was gone??

Thankfully, things stabilized when we got Mason a wet towel to chew on, changed his oxygen flow, and had a few people leave the room. With a few other hiccups, we finally got transferred down to the PICU and now Mason's hooked up to IV fluids, on 20L high flow oxygen, and finally, FINALLY, sleeping soundly. We are hopeful this will be a repeat of the "just in case" trip to the PICU we took in October, but preparing ourselves for more. Not sure how this one will turn out, please, please pray that Mason's oxygen needs stabilize and we don't have to be reminded of a ventilator or CPAP hooked up to our child. Please also pray that we have the strength needed to make the right decision for him whether that is tracheostomy or continue with the pulse dose steroids.

"Do Not Pass Go"

2010-01-03T08:01:00.000-08:00

Okay, okay, I hear you! I apologize for not posting in the last several weeks. Since we returned home on the 15th, we've been struggling to stay away from the hospital. Even as I write this, I'm interrupted to attend to the screaming oxygen alarm. Don't get me wrong, there have been good days, and for those we are so thankful. There have been days when we watch our little boy wandering around the house, happy as can be. There have been days when Mason holds up the dog's bone so desperately wanting to give it to Chief, but can't yet call him, so we help him out. There have been days when Mason's oxygen need comes down, he relaxes, and we all breathe a little bit easier. I can't say this was the best Christmas ever with our 21 month old child. I can't say this was a great New Year's, but boy are we looking forward to a better 2010!

I think our biggest struggle over the last 3 weeks has been getting enough sleep. Mason used to be an excellent sleeper. He would go to bed around 9 pm, fall asleep between 9 and 10 pm, then sleep until 9 am (maybe waking to say hi to me when I gave him his 6 am meds). We were so spoiled and we knew it. Unfortunately, at this point, we aren't so spoiled. Mason has not slept through the night in a very, very long time. We've had nights when we've had a good 3 hour stretch at a time, but those are few and far between, and mostly happen because Bill and I sleep in shifts (he stays up to give the midnight meds and I wake up to give the 6 am meds). Most nights, we awaken many, many times to either a little boy who is crying because he wants his towel re-wet (a wet hand towel or washcloth is like a security blanket laced with crack for Mason - he can't get enough of it!) and/or an alarm going off because Mason's oxygen level has dropped. Either way, we are usually awake for quite some time -- anywhere from 20 mins to 2 hours -- only to go back to bed for a short time to get whatever sleep we can before the next round.

For those of you who know me, you know that I'm a control freak, extraordinaire! The down side of this is that I can't relinquish control enough to have someone else taking care of Mason during these struggles. Even in the hospital, we ask the nurses to not come in in the middle of the night unless they have to. I do have some logic, though -- Bill and I have been doing this long enough now that we know our son. We know what oxygen saturation is "normal" when he wakes and cries and we know what to do to calm and soothe him. We don't have to worry about "trial and error" most of the time - don't get me wrong, we screw up a lot, just don't have to waste as much time trying to figure out what is wrong. So, I know I made my bed, I know I have to lay in it -- I just don't get to sleep in it for long periods of time... :-)

As far as Christmas, it was a struggle for Mason. We really saw a jump in his oxygen need and intolerance for activity that really didn't get much better over the week afterward. Then, as we were driving down to the coast for New Year's Eve and a little getaway, Mason again got worse. Unfortunately, for whatever reason, his oxygen need kept climbing higher and higher. So, we decided it would be best to do the next dose of "high dose" steroids a little earlier than scheduled (just by 5 days, not too bad). As I sit here in Mason's room at the hospital, waiting for the high dose steroids to start, I finally have a chance to finish the blog -- 14 hours after starting it this morning. Amazing how the day gets away from me...

We did get some great pictures of Mason over the last couple of weeks. Here are a few for you to enjoy:

I'm pretty sure I've got this computer thing figured out!

They're mine, all mine!

What's this gritty stuff on my fingers?

Night, night, everyone!

Home, Sweet Home

2009-12-15T21:46:00.000-08:00

Well, apparently I didn't jinx it with last night's post. Mason has continued to do well and is stable with both his oxygen and his labs, so we were sent packing today. We are so thankful that we ended this hospitalization so positively with a reduction in oxygen need and maintained stable labs. Mason is very happy to be home where he can roam around as much as he wants to. He is even showing us how much he can still learn, develop, and grow while in the hospital. Once he gets home, he just wants to strut his stuff...

Dare I Say, It Was a Good Day

2009-12-14T21:18:00.001-08:00

I know, I might jinx it, but it's worth celebrating the good times, too. Mason started the day needing less oxygen than he needed the previous mornings. He was doing great! I didn't even need to turn up his oxygen during his blood draw this morning - a first! He was actually needing less than 3L and his heart rate was around 100 beats per minute (really good for him!), AND he was in a good mood!! It was great!

Right after starting the steroid and doing his nebulizer, Mason did end up needing a bit more oxygen, but only up to 4L. This lasted for about 3 hours, then once again, his need decreased and he relaxed. He did have a little bit of 'roid rage today, but was fairly easily distracted by talking to Staramama and Pomp-pomp on Skype.

I am so thankful for good days! Please pray that this continues and I didn't just jinx it by putting it in writing!

Mama Bear and Baby Cub

2009-12-13T19:46:00.000-08:00

Well, both of us were roaring today. I started it and Mason continued. We started out a little rough with a confrontation between me and the respiratory therapist last night. Then, at 6am, another RT came in and the confrontation escalated. Finally, with the resident on call and all of the nursing staff supporting me, we had resolution an hour later. Mama bear was roaring this morning! Those who have encouraged me to have thicker skin and a stronger spine would be so proud!!

After waking during the morning events, Mason fell back asleep and ended up sleeping until about 10. We started the 2nd dose of the IV steroids at about 11 and his roaring started. No nap today, but lots of fussiness. The good news, though is that his oxygen need has come back down after an increase yesterday. He's breathing easier and saturating better. As time passes today, the roaring has decreased steadily and now he's just about back to normal -- well, as decreased as it's going to get in a 1.5 year old who hasn't had a nap.

2 of 3 days of steroids behind us; 1 more day, then a couple of days to monitor and we're home for another month. This one's been difficult, but we've learned a lot and they'll only get better!

Finally, We Got What We Came For!

2009-12-12T21:53:00.000-08:00

First of all, Mason wants to make sure to say, HAPPY BIRTHDAY, PAPA!!!

"I don't care who does it - NICU, PICU, IV therapy, Panda, or anesthesia - I want the best person in the hospital to get up here and start an IV!" That's the fantastic quote from our fantastic attending pediatrician after still no IV at 9:45 this morning. I loved it! He made some phone calls, talked to the anesthesiologist, and we had a plan by about 10:15. The anesthesiologist was just getting started with a surgery, but once she made sure the airway was good, she could let her resident monitor things, step out, and get an IV started for Mason. So, that's just what we did, finally! So, about 23 hours after arriving, we finally got what we came for - Mason started his pulse dose of steroids.

Unfortunately, between the 'roid rage, the likely aching from being poked 8 times, the IV forcing his foot into an awkward position, and Mason's last tooth starting to cut through his gums, he didn't have a great afternoon. He needed quite a bit more oxygen most of the day, but is now starting to need a little less oxygen tonight. Now, if we could just get his night time medications and head to sleep, we could start the day fresh tomorrow.

Don't Worry, This One Was "Planned"

2009-12-11T21:58:00.000-08:00

As "planned" we arrived back at the hospital today to start our 2nd round of Pulse Dose steroids. Unfortunately, plans never seem to go quite like they are supposed to whenever Mason is concerned. As I write this, an hour after Mason's regular bed time, we are still awaiting the team with advanced training to come and start an IV for Mason so that he can start his 2nd Pulse Dose of steroids. I should give some credit to the system, one of the members of the team that was on 6 hours ago did try, but after 3 attempts, she gave up and said she would send someone else from the team. So, 6 hours later, 9 hours after checking in, we are still waiting to start the steroids. Sure am glad we spent the day waiting.

On the positive side, we are back in the big room we left when we discharged 2 weeks ago. The nurses are wonderful and worked it out so that it was available for us a few hours after we arrived.

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I never posted the first part of the message and now I'm back writing at 10:45 pm. Another couple of people from the team showed up to try to start an IV and once again, unsuccessful after 3 tries. Very frustrating. Still no steroids. Now, they'll call anesthesia to see if they can start an IV. Hopefully, sometime before midnight, we can start the steroids. After all, it's what we came for nearly 10 hours ago.

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3rd update - 11:50 pm. No IV tonight. Won't start the steroids tonight. Anesthesia will come and try tomorrow. I'm awaiting a conversation with the doctor to make sure that we are 1st on anesthesia's list tomorrow so that we don't spend a 2nd day waiting. Very frustrating day.

By the way, today marks the 2nd anniversary of the day that Bill and I found out that I didn't have enough amniotic fluid and that our son may not survive to be born. It is amazing how much has happened in those 2 years. We have plenty of frustrating days like today, but are so blessed to be a part of his life. He is truly an amazing child with an infectious laugh, a fantastic smile, and the best disposition I've ever seen in a kid. I know, I'm biased, but I have proof. All of the nurses chomp at the bit to make sure everything is perfect for Mason when he comes to the hospital. They line up to work with him and all come by to say hi when we are here. We are so lucky!!

We love you, little dude!

In Search of the Perfect One

2009-12-07T19:50:00.001-08:00

Thankfully, for the 2nd year in a row, Mason was home for a short time in early December, so we were able to go on our annual search for the perfect Christmas tree. We were blessed with beautiful, clear, really cold weather. We bundled ourselves up as much as possible including socks on Mason's hands -- guess we overlooked the need for mittens -- oops! Despite the cold, a good time was had by all and 2 perfect trees were found -- one for us and one for Staramama and Pomp-pomp. Mason's been doing pretty well since starting on the higher maintenance dose of steroids early last week. His breathing has eased quite a bit, he's not working nearly as hard to breathe, and he's generally much happier. We go in this Friday for our 2nd 3 day Pulse Dose of steroids (the 30 mg/kg/day). We are hopeful that after several of these, his maintenance dose of steroids will come down and his lungs will see some overall improvement. We are eagerly awaiting that day!

Missed It By This Much

2009-11-30T21:57:00.001-08:00

We narrowly avoided going back to the hospital today. For the past couple of days, since being home, Mason's oxygen level has been on the rise and his desaturations are far too frequent. He's gone from needing 3.5 L while sleeping and 4-5L during the day to 7 while sleeping and awake. Saturday night, he was awake nearly every hour with his monitor screaming at us. Last night was a little better with the monitor only going off every couple of hours. However, this morning, we could barely get his oxygen saturation above 90% and couldn't keep it there for the life of us.

So, instead of going in for our routine "post-hospital follow up," we saw our wonderful pediatrician with the goal of going through the proper channels of re-admitting Mason. As always, our wonderful pediatrician was wonderful and suggested the possibility of trying a couple of things at home. He contacted the pulmonologist on call who supported the idea of trying things at home, but was certain that we'd still end up needing to be admitted by tomorrow -- what a vote of confidence!! Our wonderful pediatrician left the decision up to us, in part, I think, because of the look of sheer exhaustion on our faces. In the end, we decided to try increasing the lasix and the steroid on our own and seeing how things go. The good news is that Mason's labs looked pretty good...potassium down, chloride up, sodium a little high, but not too bad, and carbon dioxide elevated as always (so who's counting?).

The better news is that tonight, Mason is resting a little more comfortably. About mid day, he had a significant desaturation that took a bit to recover, but after a whole bunch of oxygen, some futile attempts at comforting him, and successfully suctioning 2 major nostril blocking boogers out of his nose, he's doing better.

What happens tomorrow remains to be seen, but for now we will start the night as we have the last couple of nights -- saying a prayer for a better night and a better day tomorrow and going to sleep in my own bed. I am hoping that the morning doesn't find me sleeping on the air mattress in Mason's room once again.

Chief is a Happy, Happy Dog

2009-11-28T19:38:00.000-08:00

He has his boy back! Yes, it's true, I am writing this post from home tonight. Mason is sacked out in his own crib and I'm looking forward to sleeping in my own bed for the first time in 35 days.

While happy for us, you may be wondering how this happened. Simply put, we said enough. We've watched Mason's labs stay mostly stable over the last several days and we have seen his oxygen be high, but fairly stable over the last 3-4 days. The doctors weren't really going to do anything different, just continue to monitor and adjust his oxygen as needed. Well, we realized we can do that at home. We can take his blood pressure, we can listen to his lungs, we can take his temperature, we can take him in to have blood drawn for labs, we can weigh him and his diapers if needed. We know how and are ready to do all of that, so what's the point of staying in? We figured and the doctors agreed, there's no real point, so let's go home already! So, we did.

We do have plans to return to the hospital on Dec. 10th to do our 2nd pulse dose of steroids. We plan to stay for about 6 days, 3 days for the steroids and 3 days to get back in balance. Until then, we are hoping for stability and a little sanity in the chaos of lab draws, weight checks, and other events.

Thanks for all the love, support, food, and prayers throughout this ordeal. We appreciate every one!

One Day At a Time

2009-11-27T21:08:00.000-08:00

Well, there's not much to report for today. Overall, today was pretty much the same as yesterday. Mason awoke needing more oxygen once again. He was up to 6L for a short time, but after a good nap in the late morning, he did a bit better, needing between 5-6L throughout the day. The attending pediatrician did mention that Mason's lungs sounded much better than he'd heard them this afternoon. Overall, he was playful and happy today, only a few temper tantrums...

We're hoping that this stability lasts for a few more days, then we might think about the journey home. I gotta say, though, it's much more comfortable here since switching to a larger room!

A Great Thanksgiving

2009-11-26T21:39:00.000-08:00

Bill, Mason, and I hosted a Thanksgiving dinner for 10 people this year. We cleaned our place; we brought in additional furniture; we even moved to a bigger place; all in an effort to make sure we accommodated everyone. Well, ok, maybe "hosted" is a little misleading. Actually, we are still at the hospital, so everyone came to us. Staramama and Pomp Pomp got the food (thanks Aunt Denise and Uncle Curt for the turkey!!!), Aunt Juli cooked the dinner and brought it to us, and Uncle Ryan was granted time off from work to come and join us. We even had enough food so that our 3 favorite nurses were able to enjoy a home cooked Thanksgiving dinner. We couldn't have asked for a better way to spend a holiday in the hospital. It almost made us forget where we were and that we've been through such a difficult time over the last several weeks. It also put things into perspective about how our lives are so intertwined with others'.

God has a way of making sure that things work out the way they are supposed to. Today was evidence of that plan. When we started the day, there were 18 patients on the floor. Then, a mass exodus started, and by the end of the day there were only 7 patients left, so many of the nurses were sent home. We were so fortunate that the 3 we have developed a relationship with over the past 6 weeks were the ones that stayed. They have been so wonderful making sure that Mason is ok, that our needs are met, and that we keep our sense of humor during this endurance race. Working over any holiday is hard for anyone. I am so thankful that the plan for us including making sure that those 3 nurses were able to enjoy a Thanksgiving dinner when they couldn't be with their families. We poked our heads out a little bit after we brought them food and they were taking pictures of the 3 of them with their Thanksgiving dinners - perfect!

As far as Mason's health goes, today was another day on our roller coaster. Last night he went to bed at 2.5L, at 2:30 in the morning, he needed 3L, at 6:30 in the morning, he needed 4L. His labs in the morning weren't great, his lungs didn't sound great in the morning. I'm not sure what changed or why it happened, but it did. Thankfully, later in the day, he did a little bit better; his labs looked much better (chloride on its way up, potassium on its way down, kidney function improving), and his lungs sounded like he was moving air much better. I think it's just part of our roller coaster and we just need to keep riding it. Tomorrow will be another day and we'll just have to face what comes with it.

On a very positive note, the doctor who was here at the very beginning of Mason's hospitalization was covering tonight. She mentioned that she had a patient who did the monthly steroid bursts like Mason is going to do and does very well with them. Her diagnosis is different, but the intent is the same - decrease the inflammation. It was nice to hear about someone else's success with such a rare treatment.

Hope everyone had a wonderful Thanksgiving with family and friends. We are truly blessed to have such a fantastic support network. Thank you for all of your continued support, friendship, thoughts, and prayers. We could never have made it through this stuff without you!