Ryan's Memorial Service

Ryan's service is scheduled for next Saturday at Desert Hills Memorial Park in Scottsdale. Everyone is welcome (except 'anonymous'). If you have questions or need additional information, please feel free to email, call, or leave a comment.

Date : 9/10/05
Visitation Time: 2:00pm - 3:00pm
Service Time: 3:00pm
Location:
   Hansen Desert Hills Memorial Park
   6500 E. Bell Road
   Scottsdale, AZ 85254
   480-991-5800
   Click here for directions

PICU D+25: Forget Atkins, try CVVH

Ryan looks like the 'after' picture from a Weight Watchers add. He was down to 18.2 kg this morning, which is >4kg loss over three days. His arms and legs are almost back to normal. His belly, on the other hand, is still pretty big. I'm not sure what is going on there, but it's much softer (which is a good thing) than it was yesterday. The BMT docs would like to see Ryan back at his weight at admission, which was in the neighborhood of 16kg. The funny thing is that aside from Ryan's belly, I have no idea where that extra 2kg is going to come from.

Other than the continued weight loss, today was pretty uneventful. The amount of pressure that the vent requires to deliver air into Ryan's lungs has decreased dramatically over the last couple of days. We are seeing peak pressure values in the low 30s now. On Monday, the vent was routinely hitting high 60s. There are two reasons for this improvement: (1) losing 4kg (~20%) of weight makes your lungs a lot more compliant, (2) vent settings have been reduced/tweaked.

There's one more thing I would like to point out. In the past, we have called out the respiratory therapists on a number of practices that we thought were, uh, suboptimal. I am happy to report that the RT staff has been fantastic over the last week. Not only have they responded to our concerns, but they have actively advocated on Ryan's behalf. When Ryan's peak pressures were rising into a range that made Cheryl and I nervous, I witnessed a number of different RTs brainstorming with the doctors and nurses to try and come up with some alternate settings/modes for the vent. Well done.

BTW, Ryan's white count hit 2.7 today. Not exactly a breakneck speed, but I'll take slow improvement over no improvement any day of the week.

Adding insult to injury

Looks like word has gotten out about our little blog. Once confined to friends and family, it appears that our audience has grown to include people that we did not directly invite. That's OK. This is the Internet, after all. Free information, free speech, the whole shooting match. In light of some recent 'feedback', however, I would like to set the record straight on a few things.

This site represents our emotional and experiential diary. We use this space to vent a small portion of the overwhelming tension and frustration that we feel on a daily basis. The site also serves to keep family and friends up-to-date on Ryan's health. To a certain extent, our little blog manages to keep us all sane (some more than others) during a completely insane process. In other words, this site is our therapy.

The entries in this blog express the way we feel about what is going on every day. The idea that we should qualify, justify, or censor these feelings is absolutely absurd. Anyone that would suggest such a thing is more interested in protecting their own self-image than caring about a seriously ill child and his family.

For the record, we will never lower our expectations for Ryan's care. Mistakes happen, but they do not need to be repeated. A patient's advocates (namely, Mom and Dad) should be kept in the loop on all medical decisions related to care. Extra precautions should be taken with immunocompromised children. Are these expectations really that ridiculous? Too damn bad.

Bravo, anonymous! You showed us. You've said your peace, please never post again.

PICU D+13: Road to recovery

Rate : 15
O2 % : 50
TVol : 160
PSup : 10
PEEP : 8.0
PPk : 28

In BMT-land, we had counts. In PICU-land we have vent settings. Here's a quick breakdown what they mean:

Rate - the number of breaths per minute that the machine generates for Ryan. So, if Ryan's respiration rate is 30 breaths per minute, 10 are from Ryan and 20 are from the vent.

02 % - the percentage of oxygen in the air that the vent uses to help Ryan breathe. The air you are breathing right now (assuming you are not on a ventilator too) contains 21% oxygen.

TVol - tidal volume; the amount of air that Ryan inhales with each breath.

PEEP - the amount of air that remains in Ryan's lungs after exhalation. A good way to think of this is the lowest level of lung inflation.

PSupp - the extra amount of pressure that is supplied during inhalation (inspiratory pressure).

PPk - The total pressure required to deliver an amount of air into the lungs. If the tidal volume is set to 160, then the PPk measures how much pressure it takes to deliver 160ml of air from the machine. This isn't a setting; it is a value that is calculated for each breath. The number that we report will be rough average of this value throughout the day. If I'm not mistaken, this is roughly calculated as: Ryan's effort + PEEP + PSupp.

You can expect to see these settings until we get off of the PICU floor. Lower settings combined with good blood gas labs are the key to getting the hell out of here.

Back to our regularly scheduled entry ...

Time to drag out the tired roller coaster metaphor once again. Things were going great, then not so great, and now we are (hopefully) back on our way to greatness again. Ryan has been opening his eyes a ton over the last couple of days. Yesterday, he was looking in both directions, which was truly amazing. I know it doesn't sound like much to you and me, but that's quite a jump for Ryan (let's see how well you do after 100 days in the hospital).

The vent settings are down, but still higher than they were a week ago. Dr. A. keeps saying that we need to put 3 or 4 good days together in order to really get somewhere. Ryan is certainly trying his hardest. Of course, that can be tough when certain members of the staff seem to be doing their best to hold him back. Cheryl is in a constant battle with (a) respiratory terrorists (oops, therapists) and (b) rogue nurses. As with all things, the majority of nurses are good. I can't be as generous with the RTs; let's just say that some of them are good.

Some helpful hints that they may want to follow:

o A sanitary circuit becomes not-so-sanitary when you take it apart and lay the pieces on dirty surfaces.

o Despite overwhelmingly popular perception, latex gloves have *no* magical properties. If you put the gloves on outside and then touch a bunch of crap, wipe your nose, scratch your butt, etc., you probably shouldn't come in and stick your finger in Ryan's mouth.

o That condensation in the bottom of the vent tube does not magically go away when you decide to turn him over. True -- it's there before you turn him, and gone after, but that's because you just dumped all 5cc of it down his %^#*@! lungs.

That's all for now. The foam from my mouth is starting to fall onto the keyboard.

Day 100

Today marks Ryan's 100th day in the hospital:

12 days pre-transplant
01 day  transplant
87 days post-transplant
=================
100 days

It's hard to believe that we've been in here this long. Don't get me wrong, it definitely feels like it's been 100 days (more like 1000). We just thought that the in-patient portion of the process would be about 1/2-1/3 of the time. What really sucks is that there is no clear end in sight. That's not to say Ryan will never get out of the hospital, but there are just so many things he has to overcome right now. As Cheryl said before, if anyone can do it, Ryan can. It's just tough to see him work so hard to beat something only to have another problem (or problems) crop up in the interim.

On to current events ...

The all-to-familiar battle between Ryan's kidneys and lungs has surfaced once again. The kidneys want more fluid to ease the burden of filtering Ryan's blood. The lungs want less fluid, because they are already oversaturated. What to do? Both situations are serious, but which do you treat first? The answer seems to be that we treat both, alternating one day at a time. An imprecise analogy would be standing on a bed of hot coals. You can lift your right foot, but doing so causes the left foot to be damaged (increased time and weight). So you switch feet and end up with the exact same problem in reverse. The hope is that the coals eventually cool and both feet can come down again. In Ryan's case, the trade off is between pulmonary edema and renal failure. Not exactly a fun time. There is reason to remain optimistic. Ryan has been in this situation before and he came out unharmed. That being said, it sure would be nice if this the last time we had to see this particular problem.

A new dimension in Ryan's care has emerged in the form of ventilator settings. The ventilator interface is actually quite advanced, but it basically boils down to two things: status and settings. The status information provides details on how many breaths Ryan is taking, how deep they are, etc. The settings tell us how much help the vent is providing. In order to be extubated, the vent should provide as little help as possible. Therefore, Cheryl and I are constantly staring at and agonizing over the vent settings. We want to make progress toward extubation, which means the settings must go down over time. Over the first 3-4 days, things went according to plan. Over the past week, however, things have been a bit trickier. Some settings went down, others went up - Ryan basically maintained status quo for the better part of the week. Unfortunately, over the last 48 hours, Ryan has required more and more help from the ventilator. Clearly, this increased dependence is due to the pneumonia and pulmonary edema. We think that the underlying cause of the pneumonia has been treated and the extra fluid (edema) will be slowly treated with diuretics. The real question now is how much time is it going to take. One thing that we have noticed is that folks in the PICU are in a big hurry to increase the support, but they aren't in such a rush to decrease the support. Since Cheryl and I want Ryan out ASAP, we find this approach completely unacceptable. We constantly hound the docs to consider decreasing the support when it's appropriate. Unfortunately, this communication is usually handled through a dizzying path of indirection (nurse -> resident -> attending physician). The setup is quite different from BMT-land, where the attending physician is always available to answer questions and provide direction. I have a feeling that Cheryl is preparing a rant on this subject, so I'll just leave it at that for now.

We continue to fight ...

PICU D+4: Throw me a friggin' bone

I know that it's usually a bad sign when we don't post to the blog, but that's not the case this time around. Ryan has been kicking butt and taking names in the PICU. As Cheryl pointed out, going on the ventilator was a really difficult decision to make. Ultimately, we felt that we had to give Ryan one more chance to get over hump. So far, it looks like this is exactly what he needed to get better. The strength that Ryan has managed to summon during this process is truly unbelievable. If I was in his position, I would have given up long ago. Good thing Ryan is not a wimp like his father. All he needed was a little help, and he's doing the rest. His heart and lungs are both much improved. There is talk of extubation in the near future. Overall, this is right out of the best-case-scenario handbook.

Cheryl has a couple of entries in the works that give all the details. I just wanted to get an entry out so people know what's going on.

From bad to worse

Sorry we didn't post this weekend, but a lot has been going on. On Friday, it appeared to be a fairly good day. Ryan's echocardiogram showed that his heart effusion was a bit smaller, so the cardiologist was no longer recommending a tap. The odd thing was that Ryan had been increasingly lethargic or "floppy" as the week progressed, despite being weaned off almost off of his sedating medications. In fact, on Thursday and Friday, I spent a good part of the day trying to keep him "awake" by doing things that he doesn't like too much, like his passive range of motion exercises. When I wouldn't do this, his oxygen saturation would drop, his pupils would go pinpoint, and his heart rate would slow down considerably. In other words, it was as if he were passing out. Dr. A believed that the only explanation for this could be that Ryan was becoming ultra-sensitive to whatever sedatives he was still on because of his underlying brain condition. Well, unfortunately, he was wrong.

On Friday evening, Dr. Graham stopped by and I discussed the week's developments with him. I told him I was puzzled that Ryan was more and more sedated as the week progress despite receiving less and less sedation. I didn't understand how this was possible. Dr. Graham immediately suspected Ryan's high sodium level. It looks like he was spot on, as Ryan's sodium level began to climb over the next day or so to dangerous levels. Although this seems like an easily correctible condition, it is not. If the sodium levels are decreased too quickly, it's very dangerous.

As the doctors worked to reduce Ryan's sodium levels, other things went wrong. His potassium level spiked, his glucose level went up, and his creatinine began climbing. The worst thing that happened -- and the thing that puts us where we are today -- is that Ryan began requiring more and more oxygen to keep his saturation level up. Whereas in the middle of last week he was requiring only 35% oxygen, as of last night, he was up to 95% and was increased to 100% this morning. Even at 100%, his saturation level is barely acceptable.

As we have asked ourselves and the doctors what in the hell happened in such a short period of time, it has become clear that Ryan's sodium level made him so lethargic that he was taking shallower and shallower breaths. This allowed the air sacs in his lungs to collapse or remain collapsed, despite the help of the BiPap machine. Now, although his sodium level is slowly decreasing, he does not have the strength to reopen those air sacs, and enough of his lungs are compromised that he no longer can get sufficient oxygen.

Our only choice at this point is to watch Ryan slowly lose his ability to breathe or to put him on a ventilator, with the hope that he will get strong enough at some point to go off. Last week, when the doctors thought he would die from pneumonia (which we now know he does not have), they told us that if Ryan went on a ventilator, he would never come off. We decided that we did not want that for him. This time, however, they believe the circumstances are much different, and that Ryan has at least a decent chance of overcoming his lung problems with a ventilator, and still coming off. One of the many dangers this presents is that he would have to go to the pediatric ICU -- full of sick children -- with absolutely no white counts. We will be meeting with Drs. Graham and Andreansky, a pulmonologist, and an ICU doctor this afternoon to make our decision. At this point, we have very few choices left.