So I thought I would never spend another weekend at Children's Hospital again. Well I was wrong. We went up to Boston last Thursday the 12th and everything seemed to go well. We made in time to the eye doctor and after hours of waiting he said see you in a month. Sounds great to me. We finally get to Clinic. More hours go by and lots of visitors stop by to see us. We have our visit with her surgeon and the team. Everything looks great. Let's increase the feeds see how she does, and we will see you in a month. Sounds great til we get about half way home and I get a call on my cell from the hospital. It's Juliana's surgeon. He says I hope you are not too far from the hospital because we need you to bring her back. Just before we left they drew some blood for her usual labs. This time her electrolytes came back way out of wack. Her sodium levels were very high and they needed to get this under control. So we turned around and back to Boston we went.
So when we finally get to the floor every one says she is only here for a couple of days and then we will send her back home. They just wanted to get her levels back to normal and adjust her TPN. I didn't believe them. For some reason I just couldn't believe that a couple of days really meant a couple of days. After so long in the hospital I just couldn't imagine only staying for the weekend. What was comforting was to be on a floor where I knew all of the nurses and they knew us. I just couldn't imagine having to go through the getting to know you phase all over again. I talked with a few of the nurses on the floor and they talked me into believing that we were only there for the weekend. They hydrated Juliana for a couple of days, put her back on an adjusted TPN, drew labs almost every 8 hours and finally we were cleared to hit the road. At least heading home this time was not as nerve wracking as it was the first time. We brought her home on Monday and our new TPN showed up just in time.
So far it's been smooth sailing, except for an ostomy bag incident we had a couple of days ago. I had to change Juliana's ostomy bags 4 times in 36 hours. Quite frustrating since I have become quite a pro at ostomy bags. Ostomy bags with Juliana have always been challenging. We would literally pray that the bags would stay on leak free for at least 24 hours. All of the nurse would try different tricks to get them to stay on but it was seemingly impossible. Over time I eventually figured out the best way to get the bags to last. I am actually able to get up to 48 hours out of one bag. Poopy bags are just something I have learned to deal with. It's not fun but I would change them million times a day if it means having her home.
Speaking of Ostomies, Juliana's surgeon is looking towards April as the month he would like to go in and reverse her ostomies. (Yeah no more poopy bags!!!) We have a consult set up with pulmonology in April and if all looks well she will be going in for surgery. He is going to reconnect her intestines and then put in a G-button for feeding. (Yeah no more tube up the nose!!!) We anticipate that she will be off oxygen by then and at least over 4 kilos in weight (which is close to 9 pounds). I was quite surprised to hear that he thought she would be ready so soon, but the more I think about it the more I feel that she would be ready by that time. This should hopefully be her last surgery.
So for now, she just needs to grow, grow, grow.