As I mentioned the other day, we got more pieces to Noah. Those pieces are kind of scaring me. All is fine and great with him now and hopefully will stay that way. They are just really concerned about what will happen if he needs to be put on a ventilator, has another episode like in July, or when he gets sick.
Our hospital doesn’t have enough experience with something like this to keep our little guy safe. To hear all the specialists telling us that if he has an episode (i.e. caused by a bout of sickness) before they figure this out he has a high possibility of dying back home. It’ll be touch and go here but they are more equiped. Uhhh, say what?! Just hearing the words die, dying is enough to scare the crap out of anyone, let alone hearing it from our Pulmonary Specialist and head Doctor of the PICU. 🙁
So we got moved from our room #18 to a room with a view today as well. At least we have a window now and can have natural light and look at all the snow we got pounded with. Sucky part about it is as we were moving the nurses said it was “since you are going to be here a while we might as well make it as comfortable as possible.” Ugh. One Doctor said something about weeks but hopefully that isn’t the case. I didn’t sign up for this….I did kind of expect it but I was just thinking 10 days, not longer.
Good news is that his gtube site looks amazing and he is stomaching his feeds so well. We certainly would have been going home today or tomorrow if they didn’t need to figure out these other issues. *sigh*
But I’m trying to focus on my little guy and how great he’s doing right now. I’ve kept him completely healthy the last 7 months and I am aiming to do so again so I don’t even have to worry about “what ifs”. The Doctors can worry about that and how we manage it when/if it does happen.