3/20/09 - Tough Day

When we came to the hospital on Tuesday, we all assumed that it would be a very brief visit. Stabilize her drug reaction and get a little extra BP medicine and home we'd go. They actually gave Alyssa the option to go home that night if she wanted to, but she wisely decided to stay. For the most part, it's been a rough road ever since. Today did nothing to change that feeling.

We did finally make it down to the ICU late last night. After a couple of dosage changes and the addition of two new drugs, her BP and pulse were finally brought down to tolerable levels. She actually had a rather good night of sleep.

Life in the hospital follows a rather routine pattern...rounds with the doctors, blood draws, taking vitals, etc. For the Deff's, our day revolves around the lab reports - HCT, platelets, LDH, creatinine, etc. The reports this week have continually gotten worse, especially with her platelet count, which this morning dropped to 101, a level that we have not seen in quite a while. To combat this, she will need to have plasmapheresis treatments for at least the next few days. Not the end of the world, but very troubling to us because no one can explain why this is happening.

Alyssa has been a role model patient, doing everything and more that's been asked of her. But regardless of her efforts, her quality of life remains very poor right now. We are very thankful for how far we have come since January, but we still want more for Alyssa.

Today, one of her doctors spoke quite frankly to us about his frustration of not being able to get her issues under control. We were told that one rather drastic option to control her blood pressure would be to remove her kidneys. The doctor explained that although her kidneys may not be functioning properly, they can continue to wreak havoc on her blood pressure and there is some support in the research that certain patients pressure was better controlled after their kidneys were removed. He warned us that there is no reason to think this would help in Alyssa's particular case, but it might be something to consider. He said the goal is to keep her healthy and avoid any serious issues that high pressure could cause before we can get her a transplant. Since Alyssa's kidneys are recuperating, albeit slowly, we won't be choosing this option. We are very thankful this doctor took the time to review her entire list of medications with an eye toward simplifying it and making it more effective with some different medications. We were surprised that at this point in time, we are just hearing about these changes that thus far seem to be working better than what she had been on.

Alyssa has been very strong but is understandably discouraged to be back to two procedures a day. She knows she is going to kick this thing in the butt and come out stronger and more appreciative of all those little things in life that we all take so for granted until they are taken from us--like a shower and washing her hair right now. She would love to have some visitors and has a nice private room in the 5500 unit.
dd