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?

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

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


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

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

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

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

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

Another Down Turn

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

Wake Up, Day 2: The Fight Begins

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

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

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

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

Wake Up, Part 2

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

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

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

Wake Up, Day 1: More Lessons for Mama

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

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

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

Wake Up, Part 1

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

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

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

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

Lying in Wait

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

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

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

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

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

Don't Rock the Boat

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

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

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

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

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

That Bread Thing

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

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

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

Trying to Find the Light and the Hope

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

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

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

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

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

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

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

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

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

A Turn For the Worse

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

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

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

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

"March"ing on for Meals

Hello Family & Friends of Christi, Bill & Mason,

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

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

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

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

THANK YOU AGAIN AND AGAIN!

Erin Van Kleek

Sorry!

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


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