During the night, Patrick’s temperature got higher (but just under the official fever line) until, at midnight, he woke up feeling uncomfortable. The nurse brought him some pain medicine and it seemed to break. By this afternoon, Patrick’s temperature was back to normal. Who knows what exactly triggered the change, but he certainly seems to feel better today.
Today’s been very VERY quiet. So much so that Brian and I are getting more than a little stir crazy. We held our first family Primary (sunday school) this morning. We colored. We went for several walks the entire length of the pediatric unit. Patrick and I snuggled up and read books. We played with almost all of Patrick’s toys. And we got to video chat with my family at the end of their Sunday dinner.
Patrick’s feeds are up once more. And otherwise, things still seem to be moving in the right direction.
So – with so little news, I thought we’d start a little educational series about what changes transplant means.
Let’s start with what changed. Patrick was born with Short Bowel Syndrome meaning that his entire small intestine and 2/3 of his large intestine were missing. Over time, his liver has become scarred by TPN. So he had a multivisceral transplant.
This is the anatomy of a normal GI tract.
The greyed out portions are the parts of Patrick’s anatomy that were missing.
The in this image, the purple portions are what was transplanted.
Patrick was given a new liver, duodenum, small intestine and pancreas. The pancreas comes along as part of the liver/intestine transplant package because those organs are all connected. To make room for the new organs (and because of other complications) they removed both Patrick’s gall bladder and spleen.
Normally, they also remove part of the stomach to make room for the transplanted organs to swell. However, because we asked for Patrick’s g-tube to be saved (because we didn’t think he’d be good long-term needing a tube in his nose) the surgeon saved most of his stomach, but divided his duodenum into a Y shape that should keep him from having too much trouble with reflux. (The sphincter of the stomach can’t be saved in this type of transplant, so they have to build in a different mechanism. Also, for some reason making the stomach smaller in transplant is important because most often the underlying disease makes the stomach not work as well.) If you follow along with medical stuff at all, this procedure is called a roux-en-y.
Having no spleen does leave Patrick with an extra level of being immune compromised. He’ll have to be on penicillin for the rest of his life. However, his spleen had been so damaged because of infection and TPN-associated liver damage that it wasn’t going to do him much good anyway. Kids with intestine problems often develop problems with their gall bladders, too.. so that just got to go.
Obviously, this was a huge surgery, as they removed or replaced pretty much everything between Patrick’s stomach and colon. And that means a lot of immune suppressants to prevent rejection. But, the new liver will actually help prevent rejection of all the other organs.
And that is what we’ll call Patrick’s new anatomy 101.
Patrick Hoopes 