Quad w/stage IV decubitus ulcers-homebound ques

[med100]

Updating about my friend in NJ. The mom was able to renovate the house. He was supposed to have been discharged in January, but many delays. He was discharged from the hospital to a nursing home. He was there less than a week, and the NF discharged him, claiming they did not have the staff to care for him. Sent him back to this hospital. That makes three NF kicked him out within very short periods of time. The mom said the home healthcare did not come through in time for his discharge to home. The Clinitron bed was approved for home.

So now he is in a waiting game, at the hospital. Been there since end of October for all but a week.. I have so many concerns and fears for him...Where will he go for respite? Hopefully this can be worked out.. Will the mom be able to handle all of the ups and downs of his care when home, inbetween the often less than perfect home healthcare system, along with her preschoolers? He has been getting support from others and I believe it can work at home and he can succeed, but no amount of support from those of us who care so much about him, will "carry him on wings" if the family keeps
hedging or delaying .... I realize his care is a huge challenge, being in so much pain, but he is an incredible person... so strong... bright.. and I believe very motivated. If you have positive thoughts and want to send it out to him.. please do. I will let you know when he is home. Thanks my friends!!

[madmaddmother]

This is such a heartbreaking story...glad to hear the bed was approved but has it been delivered yet? My heart goes out to them...I cared for my grandbabies (we lived in their home for awhile) and having a 2 and 3 year old while caring for my son's needs is a job in and of itself. My fear for him is not getting the home assistance he will need...and more will be on his mother's lap...

Is there anyway to get this story out...newspaper friends? It deserves to be told...I did go to his website and it looked like the community was behind him at one time, what happened? He is blessed to have you as a friend!

[med100]

Thanks MM,
The mom sent back the bed because told me she did not have the home VNA in place yet. So the delay is not from the company. There is a 3 and 5 year old for the mom to care for, and as you know, this can make it all the more challenging! (good for you for juggling your son and the grandkids...yes, you are MMM, the supermom :-))

I am sure the snow storm leaving 18-20 inches this week did not help. He has spent three years in a hospital, and there have been so many ups and downs. My guess is his friends are still there, but not sure what to do. The fundraising trust have been unbelievable! Beautiful people all around him! I think he needs to be home, and hope this is soon. I believe it is a story to be told, but I would love it to come from him (and yes, I have spoken to him about this.. and he is up for it and would love for it to be told.) He is such an incredible guy, and I am heartbroken over the delay, but he is an incredible fighter...He told me he knows what it feels like to die, because he has died, a few times (coded), told me about his strong faith, his spirit and strength can and hopefully will be an inspiration to all others, with his story out there.. and also a look at what the hospital has done. They did not put on simple splints, severe contractures, new wounds, etc. Yes, a story to be told...

[ReddRydah]

i would contact your local I.L center they should be able to help keep him out of any sort of hospital, nursing home

[med100]

Redd, good advice. The ILC in the area have wonderful people who have been in to visit him at the hospital and trying to figure out alternatives, but if Kessler is not taking him and he is still at a community hospital, and hursing homes not keeping him there, and his mom has gone through the efforts of getting the house ready... just hope his direction will be safely home.....but it is tough because he has not been home yet and still in the air.
Thanks!

[georgiacaregiver]

I am so sorry to read the story of your friend. My husband is a T-4 complete. He spent 3 months @ Shepherd in Atlanta. The first month, they gave me an apartment, close to the hospital, to live. The 2nd month, I was able to come home during the week and go back on the weekends. Stayed in nearby motels that have an arrangement with Shepherd and will give family of patients discounts. The 3rd month, they moved the two of us into an apartment. He was picked up daily by a bus, from the hospital for physical therepy. I was given classes on how to care for him and I guess you would say the 3rd month was a "trial run" for returning home for good. It is truly an amazing place. They taught him to care for himself, cath, bowel program, etc. He was even able to dress himself. We were able to get a taste of living our new way with the full support of the hospital staff. It would be great if he could get to Georgia. Will keep you all in my prayers.

[med100]

Hi Georgia, Welcome to Care Cure. Thanks so much for your post. Shepherd in Atlanta sounds great! I really like the idea they worked with you to get an apartment, and then used it as a transition.

I wish my friend could have gotten into a better program due to the dysfunctional family and hospital situation he has been thrust into. Kessler and Magee will not take him due to his wounds. He did get good care at Kessler first, but went home and only a few days later, in a community hospital unprepared for caring for a c-5 quad and seemingly unwilling to learn. His wounds from pressure were horrific and now has no use at all of his arms due to their tight contracture against his body and contorted.

I am sad to say he is still in the hospital. Yesterday marked 3 years from the injury. His mother told me the delay is blamed on Medicaid and Medicaid Waiver. However, his insurance situation should have been taken care of a few months ago, so I am not sure what the situation is. My guess is she really does not want to take him home, although she has gone through all of the actions- new home remodeling paid for by fundraising, etc. He has supports in NJ, but apparently this is not enough. Thanks for the prayers. My friend can surely use them.. on a wing and a prayer... Welcome wishes to your husband too :-)

[T6Wife]

Wow - this story really knocked me out of lurking mode and made me realize how lucky we are.

My husband is a T6 complete and we had zero health insurance. Two days after his accident a social worker hooked me by the collar and dragged me out of the ICU waiting room to fill out the medicaid applications. I nodded and looked dazed a lot, but we filled in enough blanks to get the apps in by the last day of the month. Because of her persistence, I had no problems with medicaid when the $100K worth of emergency services bills for the first 24 hours of care hit my mailbox. I never even had to see the other $750K or so in bills - it was all taken care of.

Then we got home and faced the reality of life after rehab. However, in our state there is a program that if he is able to work, even a tiny bit, then he is eligible for a lavish (well, lavish for medicaid) program that allows him full-time in-home care. Since we own our own business (tiny biz, just pays the bills), as long as we can show tax returns with him receiving income (and paying taxes of course), and we don't go over the 'resource' limit, then we will qualify. Stay working, stay poor, and all is okay. The second is easy, the first has been harder.

His condition is very rough and he is lucky to get in a half-hour per day. I tell him he is lucky he is married to his 'boss' who will tolerate such slacking! (: I only hope he can maintain the health he has. After all those weeks in ICU, most in a coma, rehab was very rough. The '3-hour' rule is part of the rehab house's accreditation and they stick by it no matter what. If my husband could not get in his chair after lunch, he had to have a counseling session instead of PT. Since coming home, it has been grinding pain and spasticity.

However, it doesn't hold the proverbial candle to this young man's situation. My heart goes out to your young friend and I will keep him in my thoughts. I wish him care and comfort and dignity in his ordeal.

[med100]

Hi T6 wife. Welcome. Looks like you just joined :-) So glad you joined here to talk about your situation. So glad he was and is able to work some so you could get the Medicaid Waiver. It seems like he has a great boss as well, able to help out. I know how frustrating it can be to not be able to get in our chairs and get mobile...

Thanks so much for your story. Gee, after reading it I think what is most special about your circumstances is "you", and your devotion to him. I am not sure my friend has the same with his family, which is the saddest part. I am even more saddened in the last couple of days, about his situation. His mom will not bring him home until Medicaid tells her the number of hours first and she has this set. But they will not do this until, first, she makes sure his account is $2000.00 and less, and second, he has Medicaid approved, third, Medicaid Waiver approved, fourth, he is home, and they can evaluate him. She said although he has a large family, no one wants to take time off of work or stay with him at home to help him out, while waiting. She is blaming Medicaid, when I am not sure it is their fault at this point.

What upsets me the most is he is in ICU right now at this horrible hospital, not getting the care. Pneumonia. Was his birthday a couple of days ago. My heart breaks, just breaks. The home is reportedly been renovated....on his money, and on other donations...Wish so much that he had another family member who cared enough to get him out of this situation...

Sorry about your husbands pain and spasticity. I know I have to live with both as well, and it is very wearing...but life goes on. Thanks again for your kind words. Thinking of you and your husband. Invite him to join Care Cure too if he wishes. Have lots of great information on the boards to share and make our lives a bit easier (I am c7/c8 incomplete)

[med100]

I am overwhelmed. I just got an email from the father's live in girlfriend that my friend never made it home. He is in a coma since Friday... and the hospital (Somerset) advising family to let him go.. pneumonia..

What an incredible thing.. The hospital has not care for him, the mom could not get it together with his insurance, and no amount of advocacy for three years in a hospital, neglect..... and look...

Okay friends... I am too angry to write more.. Now I feel I need support.. My poor friend.. just turned 25 a few days ago..

[new dimension]

Shepherd Center Georgia or Craigs Hospital Colorado or Spaulding Mass

[madmaddmother]

oh med100 I knowing saying I am so sorry doesn't help...Makes me so sad....I know how hard you tried...I've re read this post and still would like to kick this mother in the ass....I realize she has her hands full and will most likely feel relief when he dies and tell herself she did all she could...I can't imagine him being alone and in a coma...I do pray he lives and that somehow his life will have meaning...

I have been quiet on the forums lately, had to relearn just how powerless I am in so many facets of my life....I am working on really being greatful for all I do have...

Thanks for all your posts, I have learned much and promise I will touch base soon via pm, I've just been in that overwhelming space lately...hugs, judy

[Scaper1]

My sympathies too, I was really pulling for a happier outcome.

[quadvet]

A crying shame, pathetic, no excuse. Sorry you seem to be the only one who cares, med100, I can only imagine how helpless you must feel...

[med100]

Thanks everyone.. Okay, yes, I am in tears. I am planning on driving down to NJ to visit but my bronchitis and another infection are keeping me from traveling.

Judy, thank you. Yes, I am so stressed and angry. Judy, whenever you are up to it, would love to talk to you PM..

Quadvet, yes, I feel so helpless too, you have that right. Thanks.

Scaper, thank you..I know you and I were all thinking positive...

Newdimension, I contacted Craig and Shepard and Spaulding in the past.
They would not take him until his stage IV wounds were completely healed and he was able to participate in 3 hours of therapy. Now we are talking about his death, and hoping he will come out of a coma. I also do not have the POA and can only advocate. He asked me to help him write a book..

He was a volunteer fire-fighter...putting his life on the line for others. He has such a spirit. His mother was blaming Medicaid etc. She knows she did not want to take him home, and looking for every excuse...but there were and are no options for him unless his family comes to his side, and now, with the bad care at this hospital, and in a coma, my heart is simply broken..

I have not used his name so I could protect him, as I did not get his permission to do this. I know he wanted to live with his girlfriend, he had a landscape company...very ambtious... and great charm. I cannot imagine what the last few months have been life for him. Thought I would have had him home in December. I made a ton of calls, trying to push things..but the end of the day, if the mother was not working together...then advocacy, especially long distance, does not work. I have lost touch.. I reached out to the people in NJ hoping as local contacts they could do more... I feel I have let him down...

Thank you... I am in tears...Lets all send positive energy he will come out of this...He is one incredible young man, and I have to believe there is hope...

This is the email I received from father's girlfriend:

"He is not very well. He's in ICU, on life support, failed left lung, swollen brain, unconsious since Friday. Spent two days in non stop grand mal seizures. Doctors are giving him a blood transfusion today and then talking of doing dialysis for two weeks. If there's no significant change, then they're persuading the family to let (him) go.... "