Need my AVM Families Help

It's been a long time since I was back here. My son has been transferred from hospital to LTAC to nursing home to hospital to LTAC to nursing home. Today is day 166 (24 weeks on Monday) and his Insurance Company (not his treating Drs.) are classifying him as custodial and making plans for him to come home. Disheartening given the progress he is making in rehab now. Jay still is not speaking and had no use of his extremities. PT stands him in the frame and his core is strong and hes gotten better at holding his head up. Speech has him eating now! 2 weeks of eating a pureed lunch and yesterday he started actually chewing so we are going to move onto soft-solids! He loves the flavors and is doing great. His trach was removed 5 weeks ago and he is healing nicely. Got his first shower after 21 weeks - had a small seizure, the Dr. figured over stimulation. Today when I got there he nurse told me he appeared to have a seizure this morning and the Dr. didn't want to make changes to his meds but if it happened again back to the hospital. Meanwhile as I said, his Insurance company is sending him home. I am not totally disheartened with that. I think familiar surroundings will do him a world of good! I am more afraid of how much therapy he will get in the future. His insurance will only cover 30 visits and if he goes medicaid I guess they cover nothing. It's so frustrating (as you all know!) how they expect a Brain Injury to heal so quickly. Even more frustrating that he is making progress but just not fast enough for them so let's send him home. I have been off on disability myself since February so this is going to be challenging.....but I am up for it. This is my son.....we are warriors and do not quit! I am blessed that Jay smiles tries to talk and is happy all the time! No frustration, no tears. Smiles, hugs and kisses!
I have the opportunity to win a free roof that is so desperately needed for my house from a local roofer (although this program is national - No Roof Left Behind) The voting ends on Wednesday November 5th. Up until yesterday the votes were tied between 2 of us. Yesterday they removed the percentages to keep the winner a I don't know where we stand. I am asking everyone to take just 2 minutes and follow this link to vote for our house. You will also need to confirm the vote in your email (it stops cheating) and you can vote once for every email address you have! You can also share the link on your own social medial and help me get this out there. I need this roof now more than ever with Jay coming home! I cannot thank you enough for your support. We are all AVM Warriors!Vote For our home to win this roof!

Shirley, You are an amazingly strong Mom! Keep fighting for Jay!

What I can say is that I did better being sent home from Rehab. They also only approved of a certain amount of rehab from home, but just being home was helpful for me.

Please keep us informed on Jay's progress and always know we are here to support both of you!

Stay Strong & Positive!

Shirley, I would suggest being present at all the therapy sessions and either videoing or taking notes. Ask the therapist lots of questions afterwards, so that you and the rest of the family can do the best you can at carrying on yourselves with therapy after the sessions are over. I'm so glad Jay is happy -- that will help. Please keep us posted, and I am hoping to hear someday soon that he has begun to speak. Hang in there, Shirley!

Dancermom gave great advice Shirley. Watch what the therapists do with him so that you can do some of it at home. Sounds like he's already in great spirits so being home can only help with that. Also, ask if the hospital has a case worker that can help petition the insurance company for more rehab coverage. I was in an in-patient rehab unit of the hospital for an entire month and then out-patient rehab for several weeks after my release. My case worker helped to make sure the insurance company knew what was happening and that everything was covered. It's worth a try anyway.

I am so sorry you are going thru this. Keep your positive spirit. Your son's progresses will keep happening. Recovery is slow but it looks like he is doing wonderful. he is surrounded with strong loving people! I voted :)

Thank you all for your support and encouraging words. I do attend every therapy with him so am confident in carrying on what I have seen, just winging it as we go from there I suppose. Not sure what will happen with his insurance. He actually only has 21 days of rehab per his policy, which we all know is nothing for a brain injury. He will get 30 out patients visits per year so if I can keep his policy going we can use those this year and roll to 30 more next. That's in a ideal I think coming home will be good for him, familiar surroundings. Although a lot of care will now fall on me i also won't be driving back and forth each day and I too will be in more comfortable surroundings so I think I will be better prepared to care for him. As for his speech, he has said a work here or there then we don't hear it again, i think this is normal as he is healing. I hang on to the sign that he is able to do it we just have to heal some more and pull it out. Therapy is all about repetition - we got that :-) Wishing you all a beautiful Monday!