Sunday, August 10, 2008

Jack's Props

As I'm sure you've all figured out by now, Jack spends a considerable amount of time in bed. The reason for this is simple - it's where he is most comfortable. Jack has absolutely no meat on his bum, so it's not comfortable for him to sit in his chair for an extended length of time. And, because he has no muscles to support him, it also takes a lot of energy for him to sit in his chair and he tires after a few hours. We do try and make sure that Jack spends some time in his chair every day. During the week, Kristi is very good about getting him in his chair . But, I'll confess that we aren't as consistent on the weekends. Jack's bed is adjustable and has a built-in massager so we can sit him up at different angles and turn on the massager to keep his backside stimulated. We also use a lot of props when Jack is in bed. Here's a picture of Jack and all his props and because I clearly have too much time on my hands, I labeled the various props and provided an explanation of each one below:

A - drool rag. Jack doesn't swallow and despite trying almost every procedure known to man, we have been unsuccessful in reducing the amount of Jack's oral secretions. Thus, the need for the drool rag (a major thorn in my side, incidentally).
B - pillow to counter the effects of gravity and allow Jack to move his hands more freely.
C - blanket that holds up the vent circuits and helps reduce Jack's airleak and autocycling of the ventilator.
D - blanket that keeps the vent circuits (which are heated) from resting on Jack's skin. Jack's skin is so fragile that the vent circuits can burn his skin and/or leave a significant mark from the pressure of sitting on his skin.
E - stuffed animal that Jack's hand rests on and helps keep his fingers open (the fingers on his left hand are starting to contract in a closed position).
F - round log pillow under Jack's bum to keep him from sliding down when his bed is elevated.
G - pillow keeping Jack's leg from flopping outward (he has one propping up the other leg as well).

There you have it . . . everything you ever wanted to know (or not) about all the stuff in bed with Jack!

We did mange to get out of the house all together this weekend for Mark's birthday dinner. Here is a picture of Jack riding his lift out of the van. He's just so easy to please. A little fresh air, a change of scenery and a ride in the van and he's a happy guy.

I'll be glad when it starts to cool off and the temperature falls below 180 degrees (okay, with the wind chill factor, it's actually only 108) so that Jack and I can get back to our evening walks around the neighborhood.

Have a grand week everyone.


Anonymous said...

great post/explanation...
I can really appreciate that, anytime Max has been vented we use similar "props" but I never thought about it as a daily routine.
love the happy Jack pic:)
p.s. Happy bday to Mark!

Melisande said...

Jack is just growing and growing into a handsome young man!! Right before our very eyes!

Anonymous said...

Ann, I second what Melisande said. I'm shocked by how big Jack is. We use similar "props" for Jacob so I can really appreciate this blog entry.

Anonymous said...

Great smile, Jack! I'm glad he enjoys his trips out and about. What a sweet young man!

Anonymous said...

I agree, he is getting so big. He looks wonderful.
I will tell you thought that, that isn't much of a "wind chill". Come and visit me in Ottawa in the winter sometime then you will know what a wind chill is. :)brrrrr

Rachel Marini said...

Jack is so adorable. Gotta love those props. The things we do for our boys!!
Love ya,