Saturday, August 30, 2014

Day +92 IVIG & Appetite Changes

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 about a week after Ryan was released as an inpatient. 

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