Year 1 - Our Experience
The first year was - in a word - OVERWHELMING!
A month in ICU, then another month in a Rehab Hospital - then home .... Charlie had In-Home Therapy, multiple doctor appointments and was in almost constant pain. We have since learned that his body was still healing, it was never going to fully "heal" but it was slowly healing. His back from top to bottom had two rods running the length of his spine and screws as long as your finger ever 2 inches on both sides [that's a lot to recover from].
Our first issue was rearranging the furniture to allow room for the wheelchair to get by. And removing his bed and dresser to make room for the hospital bed. (We already had a wheelchair ramp leading into the house because my father who had passed away a few years earlier required a wheelchair the last months of his life).
Because of his condition Charlie missed a full year of school. After he was home for a couple months we got Home Bound Teaching started.
Our days were full of therapy (PT 2hrs twice a week, OT 1 hr a week), doctor appointments (one every week) , home bound school (3 hrs three times a week). All this, plus medications that left him groggy along with complete and utter weakness, his lack of energy was shocking; but his body was so tired from coping with all the pain.
After living in total confusion for months and months I finally got myself together enough to sit down with his doctor and discuss some goals - Goal number 1 was to figure out some pain management! I had to really advocate on that, doc's simple solution was to increase the pain meds, but I felt controlling the spasms would help lessen the pain. We had to test my idea, which meant if I was wrong Charlie's pain would get worse, luckily I wasn't, increasing his muscle relaxer and starting Botox injections helped. His doc was so right about the Botox, Charlie still receives the injections every six months.
Charlie's depression was heartbreaking! So the next goal was to help him realize life is still good. With his pain under control we began to ease back into life.
Another thing that really helped us - finding what Resources were out there - and ending up here.
Our story has really just began .........
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