Since Hannah’s attending changed her meds around yesterday afternoon, Hannah’s sedation issues have been MUCH better. She only need about 8 or so “as needed meds” overnight as opposed to the 30 or so the previous night. Even today, I have been in here for 4 hours, and she has only needed an as-needed med once! Things are definitely improving with that aspect, finally!
Rounds just finished up an hour or so ago. The Versed and fentanyl are now history as is the clonidine patch and the rocuronium (paralytic)! At 3 pm today, they are stopping the pentobarb drip and starting Precedex, the supposed no-more-than-24-hour superduty anesthetic that wears off very shortly after it is stopped. The goal is that when they are ready to sedate her tomorrow morning that she will really only be feeling the affects of the Ativan and methadone, and that is more to combat her withdrawal issues from all the other meds than the sedation effect.
Dr. Loftis, the attending, wants to talk to Dr. Roy, Hannah’s ENT, today for what I assume is to come up with a game plan. Hopefully I will learn more once that conversation takes place.
But there is a concern, of course, that the Precedex will not work as they expected (as it did not have much effect as before), so there is a chance that she may be extubated sooner than tomorrow morning. They don’t want to do it because there is less staff, but if they need to do it, they can. Hopefully she can make it until tomorrow when they want to do it and have it as controlled as they can.
I’m starting to get very anxious and nervous now. In 24 hours or so, we will begin the “trach or no trach” question again. Even though I am mentally prepared for the trach, I will hope we can avoid it. Not getting my hopes up, mind you, but I would love to give Hannah at least one summer in a pool, especially since hydrotherapy was her favorite therapy by far. With a trach – no swimming.
On a side note, when they did rounds today, they said that Hannah was a baby with “Gaucher’s Disease type 3.” I did not correct them. Partly because I so wish that was the case and hearing them say that sounded like music to my ears. Even though I know she is a hybrid of type 2/3, correcting them at this point does not change their plan of care.
Mama is going to be spending the day here again, except for a possible dinner with Ethan and Abigail and Daddy if they come down. I can’t believe they leave for Vegas on Friday morning!!! Even though it seemed to take forever to get here with the move, now it feels like it is going so fast!