NEED HELP!!! Cerebral palsy

Posted by Tyler's Sister @dezi23jo, Jul 6, 2016

My brother has lived with cerebral palsy all his life. 6 months ago my uncle and sister decided to move him from a small group home to a nursing home. He now has pneumonia and they are saying it’s because of his neck muscles and aspirations getting into his lungs. My concern and I need to know if I’m right. Before he moved he had never been sick also he was wearing a neck brace. Since he’s been in my sisters care she has decided to change things or stop things like his feeding tube and wearing his neck brace and tray for his wheel chair. If he was still wearing it regularly would it help him? Could we have avoided this sickness? Also they started feeding him in bed before he would sit in his chair and would sit there an hour after so he could digest his tubal feeding. Can I help him? I need to get him out of that facility but I have no say. Any advice please I’m listening!

Hi @dezi23jo. Welcome to Connect. You sound like such a wonderful sister 🙂

I don’t have any experience with CP, but i’m tagging @jndysn, @foster26 and @juanisa who have posted about it in the past in hopes they may return to share some insights.

Also, here is some info from Mayo Clinic about CP-

What I can say is that you are absolutely doing the right thing by asking questions. Even if you don’t have a say, just being a questioning voice can be impactful. I know that’s a hard role to play, but I commend you.

I’m tagging @katemn, @predictable, @lamerex4, and @dawn_giacabazi who have experience either advocating for their own health or advocating for a loved one.

Trust your gut instinct. Your radar is right on. The answers to all your questions is yes. Remove him from that facility as soon as possible. He very well could have aspirated during feeding and that’s what caused the pneumonia. I would also be direct with your sister; she is either making uneducated decisions regarding his care or is trying to rid herself of the burden. Is there a patient advocate at his facility? Is there a Cystic Fibrosis Foundation in your area? Make some noise and rattle some cages!

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