Still sick, is that possible...

Kyle is still sick, in fact we've all been sick for the last few days. Jack and Alex seem to be getting past it ok while Big is still struggling. I got hit with it in the middle of the night Thursday night..pretty sure when I realized I was sick (while sitting in Big's room giving him one of his every 2 hour nebs) I thought there was a good chance I was going to have a nervous breakdown. I did have a good laugh on Wednesday afternoon, Kyles pulmonary NP called to let me know that all the meds would be delivered to us that afternoon (all his IV meds) and she mentioned that she had talked to the on call GI dr who asked her if Kyle was being admitted....she thank god had my back and explained to her that Kyle only gets admitted if we are going to PICU and that we don't hit PICU unless we are at every hour nebs...it's been our agreement since Kyle came home from the NICU. It's at these times I am so grateful for our dr's...who know and trust us! Because Kyle has been so sick for so long, we know when he needs to go in. I can say while it's hard to make the move to the hospital we always know when it's time to go...luckily we haven't been there this time.

I have to say, and I know I say this alot....this kid continues to amaze me...he's getting so big....he knows when he needs nebs, more oxygen, more meds...almost before I know he needs them. While it's good that he can voice what he needs it's also tough sometimes...he's voicing more about his belly and his lungs. You can see and feel his frustrations.

We should have some more info about his surgery this week...we have a long way to go before he's safe to go under for this, I hate how much this sickness has set us back.

XO
Kate