The Routine

While we’re still waiting for TIRR, I figured I’d post some photos suggesting what it’s like for a family taking care of an individual with a severe traumatic brain injury.  I say “suggest”, because there’s honestly no way to explain, or accurately convey the amount of effort involved.

This particular day, the routine began at 2AM, turning Chris for the first time in the night.  The goal is to prevent bed sores and to keep fluids from building up in his lungs.  No accidents, and the urinary drain bag looks OK, so back to bed.

For a break, my parents combined the usual second turning (~4AM) with the 6AM morning medications,  enteral feeding and suppository.

10AM.  Time to clean up the results of the suppository, get Chris shaved, wash his face, etc.  Every other day also involves a full-body bed bath.

After putting Chris’s clothes on, my folks transfer him to the wheelchair and put him on the motoMED for an hour.

Noon, and it’s time for the midday enteral feeding, yogurt drink and medications.

Chris has an accident at some point, and my folks transfer him back to bed around 1:30PM to clean him up and put a new brief on.  The process takes about 30-45 minutes when it’s all said and done, which gives Chris a short hour or so before his proper afternoon nap.

Where do you source all the stuff needed to take care of a TBI patient?  You buy it from discount medical supply companies.  You pick up the product / part numbers over time from various facilities, building up a list of things that work.  Urinary drain bags that don’t back up.  Condom catheters that don’t come off as often.  Foam cleaners, disposable towels and creams that prevent rash and speed up the job of changing Chris.  Patient slings that wash easily, that Chris won’t fall out of, etc.  A lot of logistics you don’t even think about, and naturally there’s no manual.

Afternoon nap is over at 5PM.  My folks transfer Chris back to his wheelchair, where he’ll be until bed time.  It’s also time for evening food, two cans of Jevity 1.5 kCal.

This Saturday evening is a little different.  My folks’ friends are getting together at a local Tex-Mex restaurant, and we’re going to bring Chris.  It’s certainly a welcome outing for everyone, definitely a salve for the cabin fever that builds up.

Dinner is a success.  The laughter and retelling of stories is therapy.  We take Chris home in the wheelchair van.

Chris goes to bed a little later today, around 10PM.  It’s time for evening medications.

My folks decide to go back to the normal twice-nightly turning schedule, which begins at 1AM this time.

And so another day begins…