Today, Avery had a great day. God answered our prayers for avery to sleep last night and have less tremors today. I don't know if the meds we changed worked or if it was just God working.
The Doctors came in this morning to discuss with us a plan to change up the meds and their dosages such that we could tackle the tremoring without sedating him too much. We need him to be alert during the day so that he can recover and track progress, but not tire himself out with the tremors. The doctors suggested using Benadryl to calm him if the violent tremors came back.
The current mix of meds are:
Tylenol (pain management) - (09:00, 15:00, 21:00, 03:00) | unchanged
Gabapentin (for nerve pain) - (09:00, 15:00, 21:00) |reduced
Renitiadine (antacid) - (09:00) | unchanged
CloBAzam (muscle relaxant) - (09:00, 21:00) | Introduced new, ramping up
Keppra (anti seizure) - (09:00, 21:00) | removed
Baclofen (muscle relaxant) - (09:00, 15:00, 21:00) | unchanged
Melatonin (sleeping) - (21:00) | unchanged
Ativan (anti seizure) - (pre-PLEX) | unchanged
Benadryl (calming) - (on demand) | unchanged
Lansoprazole (anti reflux) - (pre-PLEX) | unchanged
Nystatin (anti fungal mouthwash) | (09:00, 15:00, 21:00) | unchanged
Morphine (pain management) - (on demand) | off
He had 3 naps today, AND a poo!
We go for PLEX tomorrow morning at 8 am, so we need to do some blood work at around 05:00 and then give him some Lansoprazole and Ativan around 30 mins before hand.
BTW, that is what a plasmapherisis centrifuge looks like.
