I have become the worst kind of superstitious. I’ve always been a bit weary of saying things out-loud. If I am boastful of something good, will it fade away? If I utter the bad into existence will it manifest in spades?
It’s been 2 days worth of not-so-bad. While not exactly progress, he hasn’t back-slided, either. I’m leery to say these things out loud, to express the hope that we might actually be one step on the path to recovery.
As far as they can tell, the lovely purple color he turned is a reaction to the daptomycin. Very rare side effect, but a known side effect nonetheless. Clarification, OUR doctors didn’t know about it , but someone finally confirmed it to be a known side effect. He now turns purple on demand whenever he receives the daptomycin infusions. Violet Beauregarde would be proud. Thankfully, it’s only once per day.
His dressing changes are slowly becoming less traumatic. While his belly and chest still have areas of bleeding and rawness, his arm and legs look wonderful. His feet and hands look amazing. Again, let me clarify. While he’s not going to win any modeling contests right now, he no longer looks like the Thing in these areas. I might even be able to snap a photo or two of his pretty pink toes in the upcoming days.
I brought up the subject of extubation today and the Fellow thought I was crazy. I want it included in discussions, though. I want tangible goals set, so we don’t lose sight of the fact that he is improving, however slowly. He was intubated because of the severe pain associated with the GVHD. With the GVHD resolving and his skin healing, he should have less pain and be heading towards extubation.
(I also realize, nothing is this cut and dry. I know he has lots of other issues, such as whether or not his lungs are ready, but it all needs to be discussed.)
Part of the problem also lies with the drugs. He needs to be sedated while he’s intubated because he could obviously hurt himself otherwise. He needs pain meds because he still has some pain/discomfort from the GVHD. I firmly believe that at this point, the sedation is needed more because he’s intubated rather than any major pain issues. They’ve thrown so many narcotics at him , he’s going to need drug rehab for several months just to come off all these meds.
His lymphocytes were elevated this morning at 8%. In the past, the BMT doctor’s would check a blood sample and check for the T-cells. We have a new BMT Attending this week that wants a different blood test, one that tells us the percentage of donor cells vs. his own cells. This test is difficult to get – it needs to be sent out of the hospital and it takes several days to get a result. So while I agree with needing this test, I’m concerned the T-cells could be multiplying and wrecking havoc on his body while we’re waiting for results.
So we’re back to the waiting game.
At least we’ll be busy while we wait. Wednesday is Jonathan’s 6th birthday. He spent his first 2 weeks of life, which included his first Christmas, in this hospital. AND He also spent his first birthday here, coming home just in time for Christmas.
Zachary’s 3 year liver transplant anniversary is on Christmas Eve. He spent his first Christmas in this hospital, just like David is going to do. Even among the not-so-good, we have lots to celebrate this week. My sister-in-law
was roped into, generously agreed, to spend Christmas break here at the RMH with the boys. So I get to spend time with the boys and still be close to David.
Sounds like my week might just tip the scales in favor of the good.