5/1

This post comes a few days late but it is good news! We got moved back up to the tenth floor late Saturday (4/26) afternoon. While in the ICU we had a lot of road bumps. Peyton does nothing easily and I (and now the nurses) know to expect the unexpected with Peyton. They pulled the chest tube which went smoothly. We experienced some pretty intense drug withdrawals over the past few days and are working closely with the Pain team to keep Peyton safe and comfortable by administering Ativan and Methadone. He also began to be very fussy and inconsolable lately with this new cry/scream. They had us go down for a stomach x-ray Tuesday to see if there was anything blocking or clogging that would cause pain and discomfort and that came back normal. We gave him an enema to see if it would help move anything. A few hours later we had the same screaming cry and we gave him a stronger enema. With that came out a little blood and a jelly like substance. They sent us down for an ultrasound to rule out intussusception (when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it can create a blockage in the bowel, with the walls of the intestines pressing against one another. This, in turn leads to swelling, inflammation, and decreased blood flow to the part of the intestines involved.) The ultrasound came back fine but we then were told that this can happen intermittently. The next morning over rounds the EA team got to experience this new cry. They decided it was time to take out the GJ tube and switch back to the G tube. They think that the J tube was causing him to experience intussusception. Once we switched back I saw results pretty immediately. Peyton did really well tolerating continuous G feeds so we have now started him on bolus feeds which he is also doing amazing with. I find him taking more and more by mouth which is exciting! We will get another modified swallow study done before discharge to see if there has been any progress with his swallowing function. Many have asked when we will be going home. I have learned not to put a date on our departure but we are hoping in the next couple of weeks. We cannot get discharged while he is on the Ativan so that is really what is holding us here along with getting his feeds in order. Other than that in the words of Dr. Jennings "Feed him and street him." xo Peace