Even with Reilly’s pressure sore on his lower back finally healed up, there is still a lot to do to prep him and his equipment to get him ready to go back to school in person.
Until recently, Reilly has been lying exclusively on his side and rotated every few hours, day and night, to avoid any new pressure sores. As such, we need to work him up to sitting upright slowly, not just so we don’t reinjure the healed pressure sore (which will always be susceptible to reinjury in the future), but also to build up his strength and stamina.
Sitting up might not sound like much, but since Reilly has not sat up for any extended period of time for close to a year now, we need to gradually work those muscles that he does have control over as well as reacclimate his body to the position. We are constantly trying new potential solutions for his power wheelchair and trunk support to ensure good posture and to avoid reinjury, so we are MacGyver-ing a lot of solutions ourselves as even the medical professionals don’t have all the answers due to Reilly’s age and size. We are close to what we think will be a long-term solution, but will then need to get Reilly up in the chair to test it out and make sure no new issues arise.
The last piece to the puzzle is Reilly’s humidified vent needs to be at school with him as he does not tolerate his travel vent for extended periods of time. This item at least has been put to bed as Tammy worked with Reilly’s pulmonologist and was able to get authorization from insurance to provide another humidified vent exclusively for school use.
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