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

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.

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.

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

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

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

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

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

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'

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?

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

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

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?

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!

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

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

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

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

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

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

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

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

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

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

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

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?

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%