We were intentionally quiet yesterday. Avery had another scary episode that set us back a few steps.
After getting pretty upset with her x-ray, they went to suction her and found a bit of blood in her tube.
They couldn’t calm her down and ended up having to bag her again.
They decided the best way to calm her was to sedate her more and paralyze her completely.
It made for an incredibly infuriating day; mostly due to lack of communication from the ICU team.
We had a new nurse unfamiliar with Avi. And an NP that, when we asked about turning off paralytics simply said, “No,” w/o explanation.
Our BMT team didn’t see a problem w/turning off the paralytics, and ICU gave us no explanation.
The icing on the cake was when a Respiratory Therapist told us they were all “scared” of Avi and she was easier to handle paralyzed.
We didn’t think paralyzing a 13-month old baby because they’re afraid of her was a good reason to do so.
It wasn’t until our night Nurse arrived (who we’ve had since transferring to ICU) that things were fully explained and our grievances were listened to.
Mom had to reiterate to him that, as cancer parents, we have been living the hospital life for almost a year.
We have also been actively involved, and incredibly hands-on, throughout Avi’s journey.
He was empathetic, helped us feel better, and made sure our concerns were addressed.
Today, the Dr we’ve had all week was back and she immediately turned off the paralytics and began weaning Avi’s sedation meds.
The hope is to get her back to where we were Wednesday before all of this happened.
Yesterday was frustrating, but we’re back on track today and hope to continue to make forward progress.
We recognize that there’s a world of difference between ICU and BMT/Oncology, but Avery is the ONE constant in the equation.
They may know medical science, but we know Avery.
The changes immediately made this morning were exactly the ones we asked for yesterday and felt ignored.
But, we’re back on the right path. We believe it delayed us by 2 days, so we HOPE to be back down in BMT by Monday.
Pray we have no more “episodes”. We want to get out of ICU!!
