Ryan ended up requiring IVIG yesterday (see previous post
for an explanation of what IVIG is). I anticipated that it would take anywhere
from 2 to 4 hours, but it was more like 6 hours from the time we got to the
infusion suite. However, everything went
fine and he didn’t have any reactions (some kids get the chills and shakes – or
other reactions.)
This coming week is Ryan’s last week on steroids. As he
tapers off, I have noticed that the last few days he doesn’t have an appetite
in the morning and it borderlines on nausea. I have to persuade him to eat something small
so that his morning medications do not upset his stomach. Even then, he only wants to eat a few
bites. Then, he makes up for it at lunch
and dinner (he had two servings of spaghetti for lunch today and then was a
little sad that we were out and he couldn’t have more). I am concerned that the appetite change could
be a sign of gut GVHD flaring up now that he is coming off the steroids. I am really hoping that is not the case.
We have an exciting event coming up on Tuesday… Ryan is
scheduled to have his central line removed! It will be so nice for him to be free of tubes
dangling from his chest. He will be able to take a normal bath or shower again
without worrying about his lines and dressing getting wet. It will also be the first time in 14 months
that he will not have a medical device surgically implanted in his body.
The picture included in this post is one of my favorite post-transplant
images of Ryan celebrating his freedom from the hospital. Brad captured it on
the shore of Puget Sound
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