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AVM Survivors Network

Homecare for AVM Survivor in full medical need


#1

Hello All

I have put up a few posts in the past, but have a new one for you.

As I explain before, my husband had an AVM rupture 9/29/12. Since then he has been in the hospital having multiple shunt surgeries, and dealing with infections and ventriculitis.

He had the most recent surgery on 1/9/12. About 3 weeks ago the doctor started talking about sending him to a nursing home because he is not becoming fully alert. He will follow simple comands (thumbs up, holding up fingers, nodding yes and no, has mouthed a few words in speec therapy). The doctors are undetermined on his recovery and feel nursing home is best option because he needs full care and rehab.

Here is where my problem starts. Shaun lost his job as a result of all of this and is now enrolled in Florida Medicaid. We can not find a nursing home willing to take on a full needs patients with Medicaid. Also, appraently Medicaid will not pay for rehab services in a facility.

They will however pay for outpatient rehab.

I am kind of stuck at this point, and because we can not find a nursing home willing to take him I have decided to bring him home and act as nurse and take him to rehab appointments. Medicaid will also pay for home health aid to come out twice a day for personal care (washing, dressing, etc.) but not for nursing care.

Everyone is warning me against this because of how hard it will be on me. Has anyone been in a similar circumstance and been able to offer me any help or tips.


#2

Hi, Melissa, I'm so sorry to her about your husband. Have you talked to the Brain Injury Association of Florida? (http://www.biaf.org/about.html) If you haven't, check with them in case there are resources available that you may not have heard of. I am currently living in Florida, and I have found it to be a difficult state for those in need. I hope others here may be able to help advise you.


#3

Hi melissa, the hospital pushed me to move my husband to anursing home. Iwas 9 months pregnant and they didn't think i could care for him. He was alert but could not walk, or care for himself. Thus was the hardest thing I've ever done, but i believe without a new born it would have been much easier. Thou can do it, but be ready for a challenge


#4

Wow I’m dealing with 26 year old partner of 7 years.He seems only to respond to me. I know the hospital wants to move him out. He is on a trek t something can move one leg and arm and open one eye. He is aware of everything I am in broward county


#5

Update. Charles still in hospital. Both eyes open and moving one side pretty good. Responds well to my commands. Still has.8 treh. What does it take to remove trech? I’m thinking of bringing him home if he didn’t have it. I see small movements on right side. It’s been 60 days since bleed.


#6

Hi there - my son suffered a severe AVM Bleed and hemorrhagic stroke earlier this year. He spent three months hospitalized and we brought him home with the trach even though it was capped. He had a cranioplasty surgery almost a month ago and his trach was removed before we brought him home. My son requires a great deal of care, he does not speak, he is fed through a peg and he has no movement of his body. I can tell you that it is a lot of work, it is exhausting but I am so happy we brought him home. The rewards of watching him work hard and improve and knowing he is grateful to be with his family and not in the hospital has made it the right decision. I lost my job but I’ve got my son with me…I know he will talk and walk one day - we will work hard every day and hope his health is restored. Good luck to you! Keep us updated.


#7

My prayers go out to you. This past week I get him up and with just little help,sometimes more he sits on side of bed. Today he actually moved his heAd to see out the window. He lasted thirty mins before he moved his leg trying to get it back in bed. The nurse was up set with me saying he looked distressed. What I see and feel is him trying to do challenging things and once back in bed I can feel his satisfaction with his accomplishments.


#8

Getting worried reading some of the news. Is the right side going to come back. Peg tube come out, mouth able to move. Trech come out.


#9

Hi. @Charles3 Sounds encouraging to me that Charles is without peg, trech and moving a bit. Tell us a bit more about how you are both getting on. Thinking about you both.

Richard


#10

Sorry Charles still has peg tube and trech. He is trying to talk. He can read ,do math and we have him standing on one leg. Some movement on right side. It’s now been three months 13 days.


#11

I see what you mean. Sorry I misunderstood. Very best wishes to you both. Richard


#12

Melissa,
I am so sorry to hear about your husband. I know that you posted this some time ago but I see a lot of similarities in our circumstances. I am hoping that all of you are doing well.

Maggie


#13

Hi Maggie
I havent been on the site in ages. My husband actually ended up passing away in April of 2013. After his AVM he had close to 10 surgerieson his brain in a 6 month period and his body simply was not able to handle the trauma.
As an odd coincidence my mother has actually suffered a brain bleed similar to an AVM on Christmas of this year. We are in the hospital with her now. I am seeing all the same rooms, nurses and doctors as we had with Shaun.
What is your situation.

Happy Connecting. Sent from my Sprint Samsung Galaxy S® 5


#14

I am so very sorry for your loss and what you are going through now with your mom. There was a time that I brought my husband home on hospice. His body had been through so much and I couldn’t subject him to another surgery that “might” help. I absolutely respect the choices you had to make for your husband. Praying for peace in your heart and comfort in your grief.


#15

Sorry have not been on awhile. Still fighting with state of Florida everyday to get supplies. Get therapy and finally got two visits from aid to relieve some pressure. It’s like the state of Florida plays games with hopes you just give up so they don’t have to pay out any money. I’m so frustrated. When I see neurologist he checks he doesn’t have much feeling on one side and says this is what happens.no comments on some fingers moving or anything positive. Ready to give up on helping him recover. Dan for charles


#16

Dan

It’s great to hear from you. It’s clear you’re both having the toughest time. Really want to send big hugs to you both. How is Charles doing? Are you still seeing small improvements, even if the neuro is not excited it is good if you can still see some progress.

Very best wishes,

Richard


#17

Charles can push and control wheelchair small distance with one foot and hand. He is learning with little help to pull himself out of wheelchair in front of kitchen sink and stand for two minutes. He is pretty good using the tv remote. I have him doing leg raises with the good leg and curls with weights with his arm. I do see movement of Thumb and two fingers on bad side…Not sure what had happened.but for couple week’s he didn’t need to be suctioned and now we’re back to daily. I can tell he is starting to get frustrated not being able to speak. I sure hope his trech doesn’t stay in much longer. We practice breathing thru his nose and I have him swallowing teaspoon of yogurt. This month on the twentieth will be his 27 birthday.


#18

@Charles3

I think you’re both doing really well. All I’ve read is that recovery can be a very long journey but it sounds like you’re doing all you can!

Keep up the great work, as best you can. I know it isn’t easy.

Very best wishes,

Richard


#19

Thanks for your kindness