After Carter's initial surgery, it was s rough few weeks. Multiple line infections, tough times on the vent, little progress on feeds. He had his second surgery to reconnect the ostomy at the end of September. At that time, Dr. Lanoue went back thru the entire bowl and found 2 strictures, which were encasing some stool. That area was removed and another 5 cm was gone from Carter's total length. The first ostomy was reconnected and the surgery went well. It would be another 6 weeks of waiting before another reconnect surgery would be scheduled. Again we battled it out with line infections and that blasted vent. Carter and the vent have a love/hate relationship. Carter loves the ventilator and hates to get off it. We celebrated Halloween in the NICU. Carter was a horse and his buddy was a cowboy. It was fun, well, fun for us anyway. I think Carter thought we were a little weird. As Thanksgiving was approaching, we prepared to have his third surgery. They began feeding him again on Thanksgiving. We thought that was fitting. We celebrated Thanksgiving with a everyone bring their favorite dish dinner. It was a blessing to be with other families who weren't going to ask a bunch of questions with long answers about Carter. We missed our family, but we needed to be with Carter. He was completely reconnected the last week of November. Hopes of being home for Christmas danced in our heads. Our hopes were soon dashed as we realized we had a much longer road with TPN and feeds. Carter's gut just didn't work like it should and there was no reason and no way of making it work.
New Year came and went... with still no huge progress, we started thinking about moving Carter out of the NICU. Many of our nurses were worried about his development since he was six months old now. We made arrangements to move him to Our Children's House at Baylor. We knew pretty quick we could not stay there. The first day was chaos and the second day, Carter received an infusion of someone else's medication. We tryed to go back to the NIcu with no luck. Once you are out, you are out. We tried several peds floors, but RSV was rampant everywhere. That is when we met Dr. Andy Gelfand. He was the medical director of Our Children's House, but also on the board at Children's Medical Center. Not sure why it never occured to me to try Children's, maybe I didn't think Carter was sick enough to be there. We were trying to go home, not start over. It was a 3-5 week wait to get a bed on the GI floor, but Dr. Gelfand helped us out, by "bypassing" the normal procedures. Which would come back to haunt us, but looking back, it helped get us where we needed to be. When we got to Children's, I immediately informed by one of the doctors, that the head of the department was very upset that we were there. Sorry, what the hell was I supposed to do about it? Anyway, we stayed for a few weeks and then we started plans for discharge, yes discharge to home. Could not believe it. During all this planning, we were waiting to hear whether Carter would be "accepted" in to Short Gut program. Dr. Mattal is the only short gut doctor in Dallas and of course the guy I pissed off. We left for home on Feb.26. Had a tough first week, started to settle in and then had a broviac leak. Took Carter to Med City, got the line repaired and headed back home. Another week at home, then infection caused by the line repair. Back to Children's, ER this time. All this time, we were still waiting to hear about the Short Gut Program. So, we have a GI issue and all this time, No GI DOC!!!! Funny huh??? While back in the ICU, we kept asking and asking for a decision. We finally got one. Carter would not be in the short gut program. WHAT??? How short do you have to do??? What a joke. It got worse, I had a conversation with Dr. Mattal that was very less than professional and essentially because we didn't follow his rules, my son was being punished. It was then I made the call to Dr. Mark Puder. Dr. Puder told me to pack and get to Boston asap. We did and the story continues in the Omegaven journal. Of course, many of the funny and juicy details have been left out to conserve your eyes and my fingers. No matter, Boston is where we were supposed to be.