Day 51 (31/6)

6:12am – Text Message

“Good morning mom and dad! I had a really good night! I’m so happy nurse Kelly is back, she knows just how to make me comfy and settle down when I’m upset. 

I started out by testing my nurse again and after my circuit change on my vent I dropped my heart rate and sats pretty low…they put this thing on my face that was cold and plastic but had a lot more cold blowing air and I came back up (we had to bag mask to give him breaths to come back up). I only did this once so they aren’t sure why I was being naughty…nurse Kelly said to not do that again and put me in timeout so I haven’t done it again! What she doesn’t know is that I was just being a little stinker and keeping her on her toes, bc my gases all night have been pretty good (good enough to keep that throat straw away!)

I didn’t poop on my own so my nurse gave me the thing up my booty again and wow I don’t like that, I gave her all kinds of weird looks 🥴…but I did poop after that and I feel way better! Nurse Kelly even did some exercises with me to help my digestion! 

My belly went down to 22cm and my head remained the same at 27.25 (which my nurse was concerned about but said my head looked and felt good)They’re all wondering where is my head draining to?

I still gained weight even though it wasn’t very much but still an increase! I now weigh 1260 grams, which is 2lbs 12.4oz

I needed NO Ativan last night bc I was such a good boy! 

Love you both so very much!”

Always 

Asher

11:32am – Call From Dr Bragg

The fluid in his left ventricle increased again so Dr Bragg called to let us know that they needed to do another ventricular tap…

She pulled 10ccs which again, is both diagnostic and therapeutic…

The color is still yellow, but because his cultures are still negative, she’s still leaning towards the yellow coloring coming from old blood and not an infection…

Although those ventricles aren’t filling up as fast as they used to, she did mention the possibility of putting in a reservoir, which would allow them to easily drain CSF without constantly poking his head and sending a needle through his brain…

I asked about the antibiotic infused tubing and she said this isn’t the type of procedure that particular tubing would fit. This procedure has very low risk of infection and the infused tube is too large for the reservoir…

Fair enough…

His respiratory support is still pretty high, but not maxed out like it was 36 hours ago. He had his last gas right before the tap and his CO2 levels are at 66% (not ideal). He was down to as low as 58% earlier this morning when Kelly gave us our update. He has another gas scheduled for this afternoon. We’re praying that those numbers change and his sats improve 🙏🏻

He’s still tolerating his feeds at 5mL/hr. His belly looks really good today!

All in all, he’s cruisin’ today. When they tried to put him on his belly he planked and was able to push his butt into the air and lock his legs until he was comfortable. Then he came back down on his own! 😂😂

Enjoy today’s video and photos 😀