Things are going much better all around. As of this writing, at 9 p.m. Pacific Time, Getty has been breathing on room air (no oxygen support) for 9 hours with bipap support. Her bipap support settings have been reduced gradually over the past few days from 20/6 to 19/4, which is approaching her baseline of 16/4.
She was off bipap today, on room air, for 35 minutes. I guess the lingo around here is a “sprint” when referring to a test off bipap. Yesterday, she sprinted for 30 minutes on 1 liter of oxygen, so today’s sprint was much better, making us all happy.
We also had a big meeting with the hospital brass regarding Getty’s major desat event, the lack of communication between RT shifts, and the RT manager’s attempt to bar us from providing hands-on care to Getty. We regained control of Getty’s hands-on care a couple of days ago and her treatments are much better as a result. The major points of the whole ordeal are as follows:
- Getty’s care will be improved during this admission as a result of our ability to provide hands-on care;
- Getty’s home care will be improved based upon things we learned surrounding this acute care issue, because we are providing hands-on care in the hospital;
- Getty will get notes in her file to remind Kaiser of her special needs during acute care when she is admitted to PICU in the future;
- One of the nice Kaiser RTs has volunteered to personally do a presentation to the entire Kaiser RT staff to educate them on the differences between standard RT respiratory protocols and SMA respiratory protocols;
- Kaiser will be better prepared for any other SMA family coming into PICU;
- Kaiser committed to us that it will work to improve its collaborative family-centered care in general to avoid this kind of situation in the future with all PICU patients;
- We have been receiving apologies throughout the day from many different Kaiser managers about this entire incident, including an apology from the RT manager who screwed up Getty’s collaborative care in the first place.
We also managed to get some rest. All things considered, it was a good day.
Thank you to all who offered us help with the administrative battle, all who have come to visit, all who have brought us food, all who have done our laundry, Grammy and Papa Mathany for taking care of Cooper and the kitties, all who have offered prayers and well wishes, and all who have sent nice little gifts for Ms. Getty!
We hope to go home in 3 to 5 days.