7:05-7:40 - Do IPV and CoughAssist treatments. IPV takes 25
minutes, 5 cycles at 5 minutes each. CoughAssist is 4 sets of 5 breaths.
Suction nose, mouth and trach as needed. While IPV is running, brush Colby's
teeth and wash his face.
7:40-8:00 - Give Colby his medications: Zantac, Zyrtec,
Co-A-10, elderberry and MiraLax, along with 6 oz water. Do g-tube site, trach
and ear wound care.
8:00 - Nurse gets here. She makes Colby's food for the day. Gets his first feeding ready and puts it in his backpack. While she's doing that, I change Colby's brief, wash him up a little (stinky pits especially!), give him range of motion exercises.
8:30 - We get Colby dressed - pants, AFO's (ankle/foot
orthotics), undershirt. Give him some more range of motion/stretching along the
way.
8:50 - Put on Colby's TLSO (back brace) and shirt. Drive
wheelchair in Colby's room. Lean it back, open up head support, lift arm
supports, fold out laterals.
9:00 - Plop Colby's big butt in his wheelchair. Adjust all
supports and laterals, put on seatbelt and chest harness. Drive him to the
living room. Hook vent tray on the back. Load on vent, suction machine,
CoughAssist and oxygen.
9:10-9:15 - Bus arrives. I walk out and load his backpack
and eye gaze. Nurse and Colby follow. Nurse put on Colby's neck brace. They
load up and away they go.
And that, my friends, is what it takes to get an SMA kid
somewhere. Every--single--day. No skipping steps. No short cuts. When you see
someone in a wheelchair, you should appreciate what that individual had to do just
to get ready for the day. You really don't have a clue until you're walking the
walk and talking the talk. I know I didn't, but I sure do now.
No comments:
Post a Comment