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%

Yeah For Stability! Boo For Being Pushed Too Hard!

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

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

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?

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

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

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?

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

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

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...

...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

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

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

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?