to this (this is only Day 4 -- I'm sparing you the worst photos because I can't bear to put them online):
in such a short period of time?
No one knows. Here we are at one of the top hospitals in the country, but no matter how amazing the doctors are, they are the first to admit that they don't have all the answers. And Henry's case has been called a "head scratcher" by numerous physicians. Those are not the words any parent wants to hear. . . we would like a clear diagnosis and plan of treatment, of course. But all they can do is put their heads together and give us their best guess.
From the beginning, they have said, "This is probably viral," but the only virus to test positive was rhinovirus. On Day 5, due to his rash and persistent fever, they began to consider Kawasaki Disease, which is not viral. It also does not have a definitive test, which makes it very difficult to diagnose. Instead, it's a constellation of symptoms that fit together and point towards the condition. Henry has had several of the symptoms of Kawasaki, but not all of them (and some of the most obvious symptoms were missing). His blood work, for the most part, has not pointed to Kawasaki (but in some ways it has, adding to the confusion). It was explained to me on Day 5 that they needed to determine whether this was Kawasaki before Day 10, for after Day 10 a multitude of effects could occur (affecting his heart, liver and other vital organs). There is a treatment for Kawasaki that can be highly effective if given before Day 10.
By Day 6, most of the doctors believed this was not Kawasaki and decided not to treat him for that. Also on Day 6, his chest x-ray showed pneumonia, his breathing became even more labored, he was showing signs of sepsis and he was admitted to the PICU in the middle of the night. Diagnosis needed to take a back seat to maintaining and saving his life. And they did, praise God.
However, diagnosis became important again when Henry went from this (much better):
back to this:
in just 12 hours. The rash came back and we started to feel like we had backtracked to Day 3 all over again. It was so hard not to begin to lose hope. We couldn't bear to walk down that road again. Not when we had just gotten him back. And worst of all, doctors began revisiting Kawasaki. Now. On Day 17. A full week after treatment would have been effective in preventing serious heart problems (like coronary artery aneurysms), liver problems, etc. To say the least, we were scared. And angry. Teams of doctors from Dermatology, Infectious Disease and Cardiology were called in to look at him yesterday, and for the FIRST time, they all wanted to see the photos I have been taking every day (which show the progression of the rash). And of course, there was no consensus. Dermatology said it's probably Kawasaki. Infectious Disease said they'd bet not. Cardiology said definitely not. We didn't know whether to be relieved that most of them thought it wasn't Kawasaki or just frustrated that NO ONE KNOWS. At that point, we asked for an echocardiogram. They didn't feel the echo was necessary after determining that it's "probably not Kawasaki," but in my opinion, why WOULDN'T we do one, just to be sure that there were no ill effects on his heart? We needed to know, if for no other reason than to put OUR hearts to rest. And it did. His echo was clear. And we are thankful.
And yes, still frustrated. We don't know why his rash returned on Saturday (perhaps it was a reaction to meds, perhaps it had been blocked by steroids for a few days and returned, perhaps . . . perhaps . . . ). But we are coming to accept the fact that their "best guess" is all we will ever have. At this point, they seem to be sticking to the diagnosis of rhinovirus with a secondary superinfection of Staph Aurea. They have seen cases of Staph Aurea which, oddly enough, mimic the rash of Kawasaki Disease. This, in the end, sounds like the most reasonable explanation. The rash appears to be slowly disappearing and I'm happy to report that Henry now looks like this:
Regardless of the diagnosis, Henry is HEALING. And that, of course, is the most important news of all.