Day 37

We've had a slight setback today. This morning we found out that Jet's CRP's were 2.1. They're obviously not explosively high, but they are higher nonetheless. You can imagine how disheartening that was for us. So I just got done talking with Dr. Burns and she said she was on the fence about the next step and asked me what I wanted to do. At first I was freaked...I didn't want to make that sort of decision, I mean that's why I'm here, right? But then I reasoned and realized that either decision is probably going to be okay considering she is offering me a choice in the matter.

The choice is this. Keep him on his oral dose of cyclosporine and since tonight is his 3rd oral dose we would test the "peak" and "trough" levels in his blood. Then, if necessary, we would increase his oral dose. Dr. Burns seems to think this might be the case because Jet is a little more on the what you might call "robust" side of the spectrum. Since first admitted here we have had to increase his IV cyclosporine dose once. So maybe also with the oral? Let's hope.
The other choice would be to put him back on the IV dose because we know it's working. Well, since I eventually would like to give up living in hospitals, I told her since tonight happens to be his 3rd oral dose (you typically test peak and trough levels on the 3rd dose...at least with the cyclosporine) let's just check out those levels since we'll have to eventually figure that out before we got home anyway. So that's the plan so far. I imagine if his levels are in the theraputic range she'll put him back on the steroid, but wants to avoid that if we can.

Here's what I've learned, and for those of you who understand...you can let me know if I'm understanding this correctly. Kawasaki Disease itself is not a chronic illness but it can cause such because of the damage it can do to the heart's arteries. KD is more of an acute illness in that it comes on suddenly, runs its course, and then goes away. Key words...then goes away! I did not totally understand this until today. So, we are not trying to cure Jet from KD, we are treating him while he has it so that it doesn't do irreparable damage to his heart. So this is good news to me, about the only good news we got today. Dr. Burns seems to think that within about a weekish Jet's KD should have run its course given the time frame he's had it already. With that said, he will still be on his medications for several more weeks.

What I've noticed since learning that his CRP's have increased a little is that he's a little warmer today. He hasn't gotten a fever yet, but my gut tells me that he may tonight and nurses have been instructed to treat him with Tylenol. I guess we'll know more in the morning. I hope his CRP's won't increase rapidly through the night. All fingers are to be kept crossed! :)