Rejection - A Postscript

We were discharged from the hospital as expected.  Well discharged on the day we expected, not quite the time. Everyone knew from the previous evening that we were going home. The nurses pushed up his last steroid dose to 9 am so that we could hopefully go home shortly thereafter. And then the doctors didn't show up for rounds until well after noon. And then they took another nearly 3 hours to actually enter orders allowing us to go home (despite specific entreaties for the attending to call his residents to order them to do his busy work while he continued his rounds).  Then they still got Jaisal's meds wrong on the discharge papers. That's right folks, this stunning level of competence and organization is brought to you by the  #9 ranked children's hospital in the country (albeit its scores are far below the top 3) and the #8 GI program in the country (although none of the transplant docs are recognized as excellent). Deep breaths. We're home, More deep breaths. Even three weeks later this clearly irks me, but hopefully we will not have to deal with this again for a LONG time.

Okay on to the important things - Jaisal and Sir Oliver. Jaisal has had weekly labs since discharge. All of his liver numbers continue to trend in the right direction. The increased prograf is causing him to waste more magnesium and his numbers are running pretty low despite supplementation. He's also iron deficient, which seems to happen to him when he's on higher doses of his immune suppressants. We're watching these numbers and I am trying to work on his diet to add in items that will help with both the mag and iron. We'll see how the goes.

Thankfully, Jaisal doesn't seem to show any other negative signs of being back on steorids. Kirk and I were prepared for some serious "roid rage" when Jaisal was on the IV stuff, but Jaisal's personality didn't seem to change at all. Whew! In fact when they had to give him a new IV on Saturday for his last dose of meds the nurse placing the IV specifically mentioned how sweet he was (especially since she poked clear through his vein on the first go and had to stab him again to get the IV placed).

The funny thing about Jaisal is that I don't think having the IVs placed or getting poked for labs hurts him too much. BUT he hates looking at them. When we'd take the shield off his arm to check on the IV or run meds, he'd freak out and ask for the shield to be put back on. When he gets labs he only cries when he looks at what they're doing. Despite knowing this, no matter what we do, we cannot distract him from looking. Poor little guy can't be fooled into looking away. 

A few last pics from the hospital.

Learning about tools from daddy.

Putting the monitors on his zebra to make sure he's doing okay.