My 7 year old son has been out of the hospital since Jan. 6. He has made progress from his November AVM surgery (had two bleeds as well), but very little. He is still bedridden, and not responsive. He can breathe on his own, move around in bed, and has his eyes open. He'll look at us, and we all think he can understand us -his family, nurses, doctors. He moves his mouth like he wants to talk, and he can make some sounds... like loud breaths. He tries to lift his head off the bed. It's a big improvement from just being on a breathing tube, and not doing anything. He has physical, occupational, and speech coming next week -but everyone works with him. Does anyone have any ideas on different kinds of therapy we could do, besides talking to him and range of motion. I've been looking for speech therapy ideas, but no luck online.
Neurosurgeons believe he will make a very good recovery, so we keep believing it.
He's on Keppra and Phenobarbital to prevent seizures, but never had one before. I heard Phenobarbital is not a good medicene for him to be on. His sleep cycle is all messed up. He sleeps all day, calmly awake through afternoon and evening, and when he's awake 12am-6am.. he's very agaitated. He's stiffens up, and there's no calming him down. I see a neurologist finally next week, but I was wondering if you all had any experience with that medicene.
There is a lot more questions I have, but can't think of anymore right now. Thanks for any replies!
My thoughts and prayers are with you....my son had AVM rupture 7/17/14...right side paralysis and loss of speech...we were in Childrens Hospital of Pennsylvania ("CHOP") until 9/5/14. I am still learning this site so kindly send me an invite so we can connect via private messaging?
Everyday these boys bet better...at times we don't see it because we are there daily...little boys are strong and very resilient and your little guy has a great mommy! Hang in there...trust in what you believe...
I'm afraid I have nothing to offer but my best wishes for your son. My son's was found when he was 5 (now 8) when an MRI was performed after a serious head injury. His is deep brain and he had radiation in Jan 13 that is in the process of working. We still wouldn't know about it if he hadn't hit his head.
Our little boys are tough and are fighting their fight. They feel and appreciate our support. Stay strong. I'm sure he feels it and is finding his own strength through you.
My daughter had a breathing tube for 4 weeks while in the ICU, it scared her throat, irritated so bad , between that and being overfeed with a feeding tube at rehab, she was completly mute for 5 mo, before she made a sound. She can talk full sentences now & tells us that her throat was so extremly soar it took alot of time to heal, 5 mo...we had ENT scope her throat to see if there was any damage & they said she would regain her voice back & she did months later, we weren't sure though...we had no idea what she wanted not being able to communicate with her. Her learning to swallow was the first thing speech worked with her on, swallowing then trying to eat solid foods came next, then talking came last. She came home from rehab with a suction machine because she drolled on herself unable to control her own secretions, and med helped, but time healing & patience, lots of rest & therapy. You will get there count every milestone as a victory...