Wednesday, November 6, 2013

TYPICAL SCHOOL DAY

6:50AM - Start saline nebulizer treatment.

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.

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