Hospital Life - April 7

So for a little bit of a reference point read this from April 8, 2015
And this from April 7, 2014

We've been waiting a long time to get the good news we got yesterday - your sleep study results were about the same as the last sleep study; still technically classifies as having mild apnea but not anything they can do but monitor for now. There was still no granulation tissue inside your trach tract; there was a small cyst but nothing that they were concerned about. Your airway has grown enough that "anyone with pediatric experience can intubate her". The stars aligned. The rings of Saturn were visible from Pluto. Everything was signed off on and we were admitted to the PICU for overnight observation with a small size trach. As long as your oxygen level stayed up and you didn't have any extra labor of breathing, the trach would come out.

Well.....What.A.Night.

You apparently don't remember being in the NICU, which is good; but we found out you DO NOT like hospitals. You didn't take a nap yesterday which made you super cranky all day, so I hoped you would sleep really well like at home - we would put you down early and you'd sleep soundly. But at home, it's quiet and dark... It's neither of those things here. So we would sleep for about 45 minutes, your blood pressure cuff would activate and wake you up every hour, you would start fussing which set off your heart rate alarm (which was set ridiculously low) which would make you even more mad. Vicious cycle. I would get you calmed down after about 15 minutes and you would fall asleep until... 

This went on from about 9:00 pm until 3:00 am when I finally convinced your nurse to shut the stupid machine up and take off the blood pressure cuff. Then we got about 90 minutes of sleep before you just decided you were done trying to sleep at all. Around 6:00 I finally caved in and just turned on the iPad with your videos and then laid back down until they came in at about 6:45 and said the ENT was on her way! I had barely finished sending morning update texts and posting when she got here, laid you back, pulled the trach and put a bandage over the stoma. DONE.

You weren't sure what to think about all that.

Your stoma is larger than the ENT expected, so she's a little bit concerned about you sucking part of the bandage in so we have to watch that closely. She doesn't want to sew it up for a couple of months though just in case we need quick access or have to reinsert it. The tract will heal from the inside out so it will start closing up on its own and whatever is still open by the end of summer she will sew up so that you will have time in the fall to learn how to cough stuff out before winter gets here. It seems really odd to already be planning for the winter!

So we get to hang out in the hospital for the rest of the day, one more night of observation (which hopefully will include sleep), and then head home tomorrow. In the meantime, they don't want you taking anything by mouth yet, which makes it super fun when all you have been asking for is your drink. And hopefully they will let us start feeds soon because your tummy is making some loud noises!