Stella was admitted on the afternoon of September 15th. Her surgery was scheduled for the next morning. She was most anxious about her IV but overall in good spirits. Only complaint has been the lack of miso soup in the cafeteria #nevergiveup
The morning of, I spent most of my time with my face buried in her neck to feel her soft skin against mine and smell her sweet scent. Trying not to let her see my tears. We scratched her feet like she likes and played with her hair. They took her in at 11:30. The surgery takes 6.5hrs.
Out of surgery and doing very well. Stella did give us a bit of a scare with a barf the next morning. It’s always a panic as she has such poor head control and we worry about her aspirating. We think it was just a reaction to the morphine as this happened last time. At noon on day two the team assembled and we extubated her to her bipap. I was a nervous wreck, worried about her plugging again, but it went very smoothly. It is such a relief to be able to communicate again, and hear her voice. She was still complaining about her back and wanting her legs stretched but we worked to keep her comfortable.
We did had to give two Tylenol and morphine boluses on top of her continuous morphine dose to keep her comfortable. But her sats were great and we got to take out the catheter and start her tube feeds up (slowly).
She had an okay second night. Lots of air in her tummy so we kept her vented. We were still waiting for a pee…and working on taking some bipap breaks and working on getting her on home feed schedule! All steps to getting her home!
Day three. A good day with steps in the right direction. Finally got a pee! We spent most of the day off her bipap. Continuous feeds are up to daily mL which is great! Still chasing the pain with extra Tylenol and morphine. Had some yummy miso soup for lunch by request.
Day four. And we were out/up! Out of ICU and up to the ortho ward! Great news for all (parent bed YAY)!!! Slowly increasing feeds waiting for bowels to start working again! 😉
Day five. Busy day. Dressing change. Quick try sitting up in our (way too small!!!) chair. Chair adjustment appointment requested. Visit from our respiratory team. Watching Harry Potter and eating some fibre-rific popcorn. Still waiting for bowels.
Day seven. Hands up if we’re slowly going crazy ? it’s seems like everything was going a little sideways today. X-ray was ordered wrong (sitting) then ordered wrong again (standing!?!) doctor who ordered it went MIA for several hours. They couldn’t find any of the gtube extensions that we use (and purchase from them!?!) and then they tried to half her morphine meds randomly. Cue crazy lady mom!
four hours later…
later we decided to go on an adventure… We find keeping Stella distracted REALLY helps, so we tried sitting up in our chair so more!
We’d never been up and had lots of fun…for about 5 minutes and then needed a rest!
Day 8. Home! No nursing all weekend so mom and dad were still be VERY busy and VERY tired but so glad to have some sense of normalcy back. Stella still has lots of recuperating to do and Myles and I have lots to sort out including new lifting techniques, all her chairs need to be refitted, and getting use to this 2lb heavier, 3″ longer Stella Bella! Thanks to everyone for keeping us in their thoughts and the lovely presents, treats, and visits to keep our spirits up! #iamtitanium #nevergiveup