Over the summer, Reilly adjusted exceptionally well to his new forever home. He was particularly happy with his new dinosaur themed bedroom, his new computer and quadstick that we are working to program and teach him, as well as the size and layout of the house as it allows for him and his wheelchair to go wherever he wants. He is always excited to tell friends and family about his new house, how he has all of his toys in his bedroom and how much he loves being there.
Given how quickly Reilly is growing, it quickly became apparent that some adjustments to his trunk support vest and wheelchair needed to be made as soon as possible; near the middle of summer vacation, a small and thankfully very minor pressure spot appeared one evening on the healed scar tissue from his previously healed deep tissue pressure sore. He was offloaded and rotated from side to side for about a month which thankfully was enough time to allow the spot to fully heal as well as get him back up into his wheelchair, make the needed adjustments, and build up his tolerance so he could resume school on the first day with the rest of his classmates.
Reilly started his first day of second grade like a pro. He told his parents and new teacher he was a little bit nervous, but after getting into the swing of things he had a great first day and continues to do amazingly well. He is happy to see friends from his class last year as well as make new friends, all of whom are very interested and curious both about his medical equipment as well as how well he manages to engage and play on his iPad with nothing but his mouth. Due to the vesicostomy procedure earlier this year, Reilly no longer is limited by a diaper and is able to attend a full six hour school day.
On top of everything else going on, Reilly’s parents have also started with routinely activating the pacers connected to Reilly’s diaphragm during the evening. He isn’t off of the ventilator yet - that will still take some significant time and effort. However, when the pacers are activated, Reilly’s vent is running a special program called “pressure support mode”. Instead of the ventilator doing all of the work and pushing the air into his lungs with 100% of the pressure needed, it is acting as an assistive device that only HELPS his lungs get the air needed each time he breathes. According to the settings, the ventilator is only doing about 20% of the work whereas Reilly’s diaphragm is doing the other 80%. He currently tolerates up to 30 minute “sprints” on pressure support mode with the support and encouragement of his parents.
This next step toward getting Reilly breathing without a ventilator will be touch and go and unfortunately cannot be rushed. The nerves that now connect to Reilly’s diaphragm after his nerve splicing surgery in 2018 function slightly differently than yours or mine. Long story short, Reilly’s nerves also act as sensory nerves so when the pacers shock the nerve to contract his diaphragm, can can FEEL it. While it’s not a major electrical shock, it is definitely something he will have to get used to. Furthermore, the sensation of breathing with his diaphragm will undeniably be different than when the ventilator is doing all the work. His parents tend to think it might be similar if one of us was suddenly ventilator dependent and how many things we would have to adjust to. This whole process is likely the same for Reilly, just in reverse.
All that said, Reilly remains amazingly resilient and continues to surprise and impress us with just how well he adapts to everything thrown at him. While there are still many different projects in motion, being in their new forever home has brought the family a much needed relief in terms of Reilly’s medical needs as well as the personal enjoyment of being in a house that they (mostly Tammy) designed themselves. This year has been incredibly busy, but also amazingly fulfilling to see some of their largest projects come to fruition. They are hopeful that over the next year, Reilly will continue making progress with his power chair, quadstick, and pacers while the finishing touches of the house are implemented.
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