Because I know everyone will notice and ask…
The nose cannula is simply because she was intubated while under anesthesia today, so it’s precautionary.
She should be weaned off before bedtime.
As for her GI scope today, I think it went just as we suspected.
First, there was a decent size hole in her stomach that seems to be the main source of her bleeding.
They cleaned and packed it to see if that helps it stop bleeding so it can heal.
We asked if the NG Tube could have caused it and were told yes.
This is why we’ve continued to advocate AGAINST the tube and will keep doing so as her stomach heals.
She’s taking her oral meds fine and we believe she’ll take feedings orally if given the opportunity.
Next, they found several small spots of fragile tissue coupled with an “angry” stomach and bowel.
This is pretty textbook for GVHD in the gut (both upper and lower); which we also suspected.
We may have to wait for the biopsy results to confirm, but will be starting steroids to help that issue.
We asked our NP if she’s checked off enough “side effect boxes” yet so we can go home.
It seems she’s getting a lot of them; even eczema.
Fortunately, she just keeps pushing through them.
ICYMI: today marks one year since her diagnosis, and we were able to turn it into something good.
Thanks to all of you that donated to our toy drive, we were able to deliver almost 250 toys/gifts to the hospital today for kids who’ll be inpatient this Christmas.
THANK YOU ALL for your donations, as well as your support throughout Avery’s journey.
There are definitely days where we couldn’t do it without all of your encouragement and love.
