A Bish Tale: Fifteen! Week 11

After 10 weeks in ICU, we finally made it to 15! On Tuesday, we officially had orders to move and just had to wait for a room to become available. Finally, around 6pm we were on the move. Trey and I both stayed the night in our new room, and that first night was quite the experience. There is a pull out day bed they say fits two, but I would seriously question that. Brody slept great that night, I on the other hand did not. I had never spent a night with Brody, and sadly was unaware of his habits and noises he would make. He has a breathing condition known as Stryder which is a result of his paralyzed vocal cord. As a result he has a tendency to breathe loud and sound like a squeak toy. Throughout the night, he would start episodes of this noisy breathing and I would jump up thinking he was about to start screaming, but he was sound asleep. Not to mention, the nurse comes in every 3 hours to check his vitals and set up his feeds. I am an extremely light sleeper, so this wasn't the best mixture for me. All in all, I think I slept for maybe an hour at about 3am. That morning, Trey took over and I was able to take a nap for a couple of hours before the doctors started making their rounds. The next couple of nights got better. Our night nurses were like ninjas and I wouldn't even hear them come in. A few of the nights had intermittent periods of Brody needing his pacifier, but overall I can't complain. Well maybe I can complain about one little thing. It seems that some mornings just as I would get Brody to sleep and lay back down, someone would need to come in and mess with him. Whether they would need to draw blood, weigh him, or poke on him and listen to his chest to get ready for rounds it was always just after I got him settled.

As far as his plan from here, everything is kind of up in the air. Towards the middle of the week, we started talking seriously about where we need to go from here to get us home. We discussed the possibility of putting in a G-Tube (feeding tube) in the belly. If we did this, it would require surgery and about a week later we would be looking at going home. Realistically, Brody will probably not be taking all his feeds by bottle for months and it isn't realistic to leave him here in the hospital just to work on that, and though I would rather not have him on a feeding tube, it makes the most sense. All the different team of doctors would need to discuss and agree on this plan. We had things pretty much set to go and were going to have the procedure scheduled for the early part of next week, but we found out on Sunday that our heart surgeon wasn't on board with this plan. The heart surgeon would rather go in and repair the aortic valve that is still leaking that way his heart would be stronger to go through surgery to put a g-tube in. The surgeon still wants to keep his plan in place, to put off that aortic valve repair until Brody is bigger and until it really becomes an issue and he shows signs that he is not tolerating the leaking anymore. So, we are back to the planning phase. I don't really know what this all means at this point. I don't know if we will be hanging out here in the hospital for a longer period of time, or if they will send us home with the feeding tube he currently has. This week our team of doctors are going to need to discuss and come up with a long term plan. It is a little nerve racking as I sit here and wait to find out if we will be going home anytime soon and its frustrating having all the back and forth, but I know all these doctors have Brody's best interest in mind and will make a collaborative decision to do what is best for him.