Wednesday, August 22, 2012

The Ferrari of Wheelchairs.

I used to say Maggie's wheelchair was like a Cadillac because of all the bells and whistles. Now I think a better comparison is a Ferrari. It's sleek and pretty, but CONSTANTLY in the shop.

Day 3 of school.. Day 6 of the long awaited wheelchair repairs. Day 1 of me going to school to meet with the wheelchair guy about the problems with the new equipment, which now has its first piece of duct tape..

Ahhh. I'm back in the saddle again.

The duct tape is not to cover something that's ripped, but to prevent Maggie from unzipping the cover to the yoke on the headrest. She discovered the zipper about ten minutes after the new piece was installed and pulls it down. Then she starts clawing at the material underneath which is something like a hard foam. I didn't realize that at first until I saw something black on the edge of the opening on her trach. I shrieked and jumped up thinking there was a bug about to crawl into her lungs and quickly swished it away. It wasn't a bug, but there was the same material in her hands. Then I saw the claw marks in the material exposed because Maggie unzipped  it. Out popped the duct tape lickety split.

Protecting Maggie from herself and her unzipping fetish is easy, however. The bigger problem is that the new headrest does not work for Maggie at all. Sad but true. We waited months for it and it's not right. It's not broken - YET, but it is unworkable and needs constant tightening.

The guy said he thought the "set screws" weren't properly tightened, but I know it's not that simple. This is a case of Maggie's big heavy head, that is constantly moving and generally extending back, overpowering this overly intricate set up. We need something with less moving parts that will provide her stability. It needs adjusting constantly (like every 10 minutes)  and several times I  have to take it completely apart to make the adjustments.Yesterday I thought perhaps she doesn't even need the long yoke piece and simply removing it would fix the problem. Nope. As I did the temporary repairs her head kept falling to one side. I could not fix the chair and hold her head at the same time and had to call Steve from upstairs to lend a hand. It's craziness.

 In addition the yoke is dangerously close to her trach. If Maggie turns her head quickly, it could knock the tracheostomy tube right out of her neck. And that is completely unacceptable.

The other end also presents potential dangers.  The new foot box came as a split - that is separate pieces for each foot. That is just an error. It should be one solid box which provides fewer spaces to get her foot wedged.  I spoke with the guy on the phone and he remembered we did it separately for a specific reason. I said no. The appointment came just AFTER we had to call the fire department to rescue Maggie after getting her foot wedged into the chair. (Maggie World: 911. What's your emergency?)

Hopefully it won't be months to get the right parts.

Meanwhile, I going to look at a fancy red Ferrari for me. Why should Maggie have all the fun?  

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