Long time no update! I can't believe I didn't update before Landon had his surgery but I have been so busy that I didn't get a chance. Everything went well.. now let me back track-
Saturday we left to come up here around noon. For some reason we have been having bag leaks about every 6 hours for the past couple of weeks even though I do everything the same every time. I have my suspicions that about half of them are defective.. But anyway, even though we put a fresh one on before we left we didn't even make it to Louisville, KY (3 hrs away) before he was leaking all over the place. We stopped there to clean him up and walked around their mall (a really nice mall, by the way!) and then we were back on the road.
Two hours later we made it to Cincinnati. Our first pleasant surprise was our hotel. I had booked our room through the hospital and had looked at their price range chart and selected the cheapest one I could find within 10 miles. Even though we had gotten a discount, you don't usually get much for $50 a night and so I was prepared for the worst. It was actually one of the nicest hotels/rooms I've ever stayed in, and we usually spend $120-$150 a night on rooms! It had an indoor pool and was walking distance to tons of shopping and restaurants, plus due to unusual weather it was 60 degrees out and so we were able to take advantage of that and explore the area. Fortunately I had already booked the same hotel for the few days following Landon's release from the hospital and so we can look forward to returning.
Sunday morning we came in and Landon was admitted to the hospital. He was put on a clear liquids diet and they inserted an NG tube to give him GoLytely, which should really be called go violently since he kept blowing off bags every 15 minutes no matter how often we emptied them. His bowels got cleaned out and then we went down for surgery yesterday morning. His surgery was scheduled for 11, but having been through surgeries in the past it was no surprise that they were just taking him back at 12:30. It took an hour to prep him and then 3 hours for the surgery, as expected.
At 4:30 we were called in to one of the conference rooms to talk to Dr. Levitt and find out the specifics. The first thing that we found out was that the part of his colon used in the ostomy was in fact good. He said there was a tight band around the ostomy and thought maybe that was why it had not been emptying like it should causing Landon to keep getting enterocolitis. That turned out to be great news because it meant less colon to lose. Landon was able to keep two-thirds which is more than was expected. Once you lose more than half you run into problems with dehydration and so it was good that Landon was able to keep so much.
Everything has been going well so far, but Landon is in a lot of pain. He had a tap block which wore off around 3 AM and ever since has been pretty sore. He is getting IV pain medication and Valium. He has an NG tube in suctioning his stomach, and currently has a nasal canula for extra oxygen which should be gone by the end of the day. We were warned that today will be the worst day for Landon as far as pain goes, so we are trying to keep him resting. After making it through today we will wait for him to have his first bowel movement sometime between tomorrow and Friday and then they will do an x-ray to be sure that he emptied his bowels. If everything looks good with that then he will begin eating again, which is the first step working our way towards leaving the hospital.
The only thing that has not gone well so far was the plan for genetic testing. Babies with Hirschsprung's often have RET gene defects, one of which is known as Multiple Endocrine Neoplasia Type 2 (MEN-2). Just under 5% of children with Hirschsprung's have that specific defect, which causes malignant tumors on the thyroid and adrenal glands. If the defect is discovered then there are steps that can be taken to minimize the risk of cancer, but it is not currently standard practice to perform genetics testing on Hirschsprung's disease patients. I had requested that the vials of blood be taken during surgery to avoid extra sticks and blood draws and that was the plan, but for whatever reason Endocrine decided not to do it without telling me. They are coming by any time to talk to me about the tests and I assume to try to tell me that they are not necessary, but I want this testing done and now I'm frustrated that Landon has to have extra sticks because they randomly decided to deviate from the plan and didn't feel the need to talk to me about it first.
I'll update again soon and let everyone know how Landon does. Here is a picture of him being his normal happy self right before going back for surgery.
