From the desk of NYANA B.
Transcribed but not read
Hey! Did you guys hear!? I spent a whole ten days on high-flow! They took the CPAP hat off of me and I lost the scuba gear on my face and I had perfect peripheral vision again! It was awesome. Oh, and speaking of vision, did Mum tell you that after failing my last two eye exams and showing stage II ROP in one zone of one eye, I passed my most recent exam last week! ROP spontaneously corrected itself (as was hoped) and I don’t have to have another eye exam for four whole months! Yay me!
Mum and Dad loved the week I was on high-flow. It was so easy for them to see my whole face, and my personality really shone through without all that stuff attached to me. I was working extra hard to keep up though, without the pressures from the CPAP machine. Oxygen-only was awesome, but I needed about 10% more than usual (35% instead of 25%) for most of my high-flow trial, and by the end of Day 10 I’d collapsed some alveoli. So as much as I wanted to just curl up with my cozy blankets and get much-needed sleep, Mum and Dad, thrilled at how awesome I looked, were insistent on capturing megabytes of megapixels, whatever that means.
They took tons of pictures when I was as close to tackle-free as I’ve ever been. Nurse Awesome even moved my feeding tube to my nose, so for more than a week I didn’t even have anything taped to my chin! Here are some of Mum and Dad’s favourites. Oh, and Mum is apologizing to anyone on her FaceSpace if they’ve seen these pictures before. Apparently she jumped the gun and put these up there before my army had a chance to see them.
As I’m sure you know by now, my high-flow adventure didn’t continue, and after ten days I was put back on CPAP. Just catching my breath and we’ll try again in a week or so. In the meantime I’ll keep working on lowering my oxygen needs (24-27% is good, but there’s a few more percent to get me to room air) and I’ll keep working on this feeding business—we’ve been able to cut my feeds to 45 minutes instead of 90, but we can’t quite get me down to half an hour without me puking. Not yet…
Thanks for sticking out this journey with me and my parents. I don’t want to be obnoxious and make my parents crazy but I know I can’t leave the NICU until I’m good and ready and that’s still going to be a while. All I can do is be as cute as can be for them, so hopefully my time here isn’t so terrible for them.
Oh, one more thing. Mum said you were all praying for my friend Neema. Can you please think extra good thoughts for her in the next few days? She’s fighting really, really hard but her parents have had some very serious conversations with the doctors and things aren’t looking so good right now. I’d even be willing to spend a whole ‘nother month on CPAP if it meant she’d get better. Just a healing thought from each of you would be awesome. Thanks, guys. I’m proud to call you all Nyana’s Army.