This picture isn’t easy to post but it is reality. The past week being home from the hospital has been rough. Non stop fussing. All day long. This is GM3 irritability being exacerbated by a few factors. 

While Gavin was in the hospital, he was treated for another episode of c-diff, which made him very miserable. On Monday, the irritability reached an all time high. He was having trouble having a bowel movement over the weekend so we ended up in the ER to make sure there wasn’t something else going on because of how irritable he was. It turned out, he was very constipated and unfortunately, being “cleaned out” provided no relief. 

Yesterday, Gavin had labs drawn. His liver numbers are still looking pretty good and have even come down more. The new anti rejection medication (Prograf/Tacrolimus) level came back pretty high which, coupled with his high dose of steroid, is likely the cause of his extreme irritability. Also, he is battling a cold so that isn’t helping with his irritability either. 

Since Gavin’s liver numbers were good, they were able to wean down a little on both the steroid and the tacro. Hopefully, in the next day or so he will begin to feel the effects of the medication change and his irritability will start to subside.

It’s so hard to watch your child be so irritable and miserable and not be able to console them. My poor sweet boy, how I miss his smile and can’t wait for it to return.