If you’ve ever had the opportunity to stay the night in the hospital with your kiddo, than you know what it feels like to truly be exhausted. The surgeon was done with Cole’s surgery approx 2:30pm yesterday, but two different floors (ICU, TCC) couldn’t agree as to where Cole should go so we had to stay in the PACU until 8:30pm. It’s amazing to see how many people and specialists are required to make such a simple decision. Simple for me, at least. Long story short, we ended up being admitted in the PICU so he could have extra attention. Cole is extremely persistent and that, precisely, is why he’s progressed as much as he has. However, it also works against him. For example, he begged to sit up and drink water for 3 hours, desatting and requiring oxygen until Mark and I (broke the rules) got him up to drink.
As soon as he finished 8oz of water in less than 1min, he was sound asleep. Last night he fainted, stopped breathing, and required resuscitation. Mark and I acted extremely fast and had it all taken care of while 10 plus doctors stood around watching us. Every few minutes a nurse comes in to take a pulse, blood draw, or something else that will wake up your kiddo. Everytime Cole would freak out, sign stop, no, and all done. The older he gets the more he communicates as to what he does and doesn’t want. Meanwhile, it means Mark and I have to constantly stay awake to ensure Cole knows we are here so he doesn’t stop breathing, from being upset.
Ortho came in and explained that due to the CSF leak, he will need to remain laying flat for 48hrs. Tomorrow afternoon he will be cleared to sit up, get fitted for the brace, and Sunday he should be able to begin walking. We will stay in the ICU until tomorrow when he’s cleared to sit up. If everything works perfect, we could be on our way home Sunday evening or Monday.