Day 100

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

12 days pre-transplant
01 day  transplant
87 days post-transplant
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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 ...