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Thread: Nephew has new C4,5 SCI

  1. #21
    There is no reason that down the road he cannot have a fulfilling and happy marriage and family life. Some men with SCI have problems with erectile dysfunction, some do not. For those who do, there are measures that can be used so that virtually all men with SCI can have a functional erection. Some men with SCI don't ejaculate. If they do not, then they may be candidates for methods for artificially retrieving sperm to use for artificial insemination and other methods of ART. If these are not options, then donor sperm or adoption are also options.

    If you want to read any more about this, this is an excellent resource:
    www.scifertility.com

    When it is time to start talking to him about these issues (which should start in rehab) he should receive both education and counseling from a rehab professional who is expert in sexuality rehabilitation and SCI. This should occur before he starts dating (which should be a few years now, no?) for the issues he is most concerned about, and may need to continue periodically as he matures and starts to consider having a family.

    Studies show that people in wheelchairs (mothers and/or fathers) make great parents, and they have healthy kids who are more mature, have higher self-esteem, and greater ego strength than their age-matched peers.

    Don't worry...you don't have to give up on being a great-aunt!

    (KLD)
    Last edited by SCI-Nurse; 10-19-2006 at 02:37 PM.

  2. #22

    Update....

    Hi everyone..just got back from San Jose again. Austin is doing better. The drain from his surgery should be out by the end of the week, then they will do a 24 hr. breathing test, and if all goes well the trach can come out. Then they will do the swallowing tests, and if nothing is leaking he can start eating. So we are still looking at at least a week and a half to 2 weeks before he can come down closer to home. We are pretty sure that he will be going to Rancho Los Amigos. They just have to get all of the paperwork done.
    It was pretty hard on Friday, because the doctor came in and showed Austin a model of a spinal column, and he explained where his injury was and how he was affected. The hard thing was that Austin had the mindset that everything that he had lost would be coming back. He didnt realize that most of the damage was permanent. I guess we all just assumed that he knew, but he actually didnt. He knew he was paralyzed, but he didnt know it would last forever. He took it quite hard, but as of yesterday he was doing better. We had a long talk, and he told me that he guessed ity wouldnt be so bad being in a wheelchair for the rest of his life, he just really wants his hands back. Which really breaks my heart, because I know that even with all of our prayers and hopes, we just don't know if they will or not.
    My dad is doing okay, just one day at a time, I guess. I think its helping him a lot just to be there with Austin.
    I think my only question for someone today is: If he doesn't get his hands back, will he be able to do his own cathing/bowel program? Can you do that without your hands, or is someone going to have to do that for him for the rest of his life?
    Thanks for any responses!
    Georgia

  3. #23
    Sometimes the cathing/bowel issues in a quad are solved via creative plumbing.

    I have some friends with suprapubic catheters, where there is a hole created at the bottom of the stomach, with a tube that goes directly into the bladder. The urine goes out of the tube into a bag, often a legbag which is strapped to the leg. There are also Foley catheters, which drain from the penis into a bag.

    For the bowels, some prefer to hire a personal care attendant to do the bowel routine in their homes. A few have elected to have colostomies performed. It eliminates or reduces the need for dependence on pca's, enabling freer travel and more independent living.

    Once again, creative plumbing.

    What seems unthinkable becomes routine. People adapt. You'll see. Try not to worry too much about the future, help him make the most of the present and the future will take care of itself.

    I'm glad Austin has such a wonderful aunt. Keep us posted!

  4. #24

    Thanks!

    Thanks, Betheny...I know I'm getting ahead of myself. It's just hard NOT to think about the future, I guess. But I know he is one strong kid and I know he's gonna be ok. I guess I just want to be as helpful as I can and learn all I can, in order to help him out as much as I can. (That's a lot of cans! LOL) You all know what I mean. I can't wait until he gets through rehab so he can get home and talk/type to you all himself..because you all are a wonderful group of people! I just can't reiterate enough how thankful I am to have found this site and to have talked to so many wonderful, caring, and helpful people. You all are truly a Godsend.
    Many blessings to all of you!
    Georgia

  5. #25

    UPDATE!!!! (And a couple q's, too!)

    Hi there..well, Austin is finally in rehab. He made it to Rancho Los Amigos in Downey, CA. He is still 1 1/2 hours from home (depending on traffic) but it's a lot better than the 7 when he was in San Jose! We're not super impressed with the place just yet, but we're hoping it will get better. He'll have been there for one week now as of tomorrow. He has a little bit of his right wrist now, but his left arm still doesnt do anything. They are telling us that he may get his thumbs, but even that will be a while. I know he is really depressed right now and I think he finally made it to the "mad-at-God-and-Grandpa-and-life-stage". He hasn't said anything to my dad yet, but I can see it in his eyes. He seems so distant from us all and he never seems happy. (Which, DUH! I obviously understand why, but shouldn't he have at least a few moments when he's not sad?) I just want to see him smile. His date to come home as of right now is Dec. 5. Thats not set in stone, but we are so excited anyway.
    I wanted to ask for those of you who have been there...what is your advice for my sister and brother-in-law? They are so completely overwhelmed right now at everything they have to learn. They know that they will have to get up every 2 hours at night and turn him, and my sister is all of 110 pounds sopping wet, and she has very bad back and neck problems. Shes already had 1 surgery on her neck and now she has bulging discs in her back and she is freaking out about how to do transfers, rolling him over, etc. My brother-in-law had to go back to work, of course, so he wont be able to do it all of the time either. They have the rest of us, which consists of me and my husband and my parents, but I have a 2 year old and a 1 year old to take care of as well and my parents are in their 60's, so they arent in the greatest of shape either. Does insurance cover home health care? And would it have to be 24 hour care, as well? Do they teach you all of this in rehab? I know that as of right now they havent been told anything so they are beyond stressed. I know it's taking a toll on their marriage already as well. Id love to hear what anyone has to say about this!
    I want to post a picture of Austin on here, but Im not very computer literate so maybe my husband can help me tonight or tomorrow so you all can see what a handsome lil guy he is!
    Thanks in advance for any replies!!
    Take care,
    Georgia

  6. #26
    Every insurance is different as to what they will provide for in home care, but they likely will provide some care. I don't know about CA, but the school system in IA do pay for care/assistance while in school. While he's adjusting, having help for the physical tasks at school will help, but make sure he keeps doing what he can on his own and continue to try to do more.

    Unfortunately, the divorce rate for parents of a special needs child is very high. Make sure that they get a break and can go on frequent "dates" by themselves without having to worry about Austin or any of the kids. This is important now and in the future.

    Glad to hear he's doing well, keep us updated.
    C2/3 quad since February 20, 1985.

  7. #27
    Rancho is not the Ritz, but they know their business. They are very skilled at helping families make the adjustments, and learn about the resources available. The family should be very frank about their worries and fears with the rehab social worker and case manager. These people's job is to make sure that they know about options, get linked to resources, and that arrangements are made for a discharge plan that will work.

    Insurance makes a big difference. Some will pay for turning beds, mechanical lifts, etc. for example, while many will not. Find out (your case manager will know) just what will and will not be covered. Are you/family/friends doing any fund raising? Once you find out what is NOT covered, then you can set specific targets. Just be sure that you are using an organization (such as the National Transplant Fund you will find at the top of this forum) so any funds collected don't make him ineligible for state programs.

    He should be eligible for California Childrens' Services (CCS) which will fund some home care. Even those on ventilators don't get 24/7 care at home, and few insurances will cover home health care that they consider "maintenance" (such as turning, bathing, dressing, feeding, etc. etc.). Family should talk over these options with their rehab team NOW. Don't delay. Dec. 5 sounds like a long ways away, but it will be here before you know it, and the holidays between now and then only make it more difficult to get things arranged.

    (KLD)

  8. #28

    Response/Question about laws

    Thank you both, trainman and KLD for the replies. I know that he can't get anything from CCS because his dad makes too much money..LOL. He makes about 8,000 more a year than is required so their outta luck on that. I know they are looking into Medi-Cal as well to help cover what insurance doesnt. They have a good PPO, but it's only 80/20 so they will still have a lot to pay, plus getting a van which will be the biggest thing. We went to Wells Fargo yesterday and opened a Trust Fund Account. We knew a lady who went to church with us who is a lawyer and she helped set everything up for us. That way we can start doing fundraising to help out. If anyone has any good fundraising ideas, please let me know! I guess as far as the routine care things, we will just have to make a schedule for the family as to who will be able to help on what days.

    My sister is going to come up today to get a break for a couple of days, which will be so good for her. I hope she and her husband can get some good quality time in together. I am shocked, trainman, to hear that the divorce rate is so high! You would think this would bring you closer together, not tear a family apart. Its really sad because I think that would be the last thing my nephew would need while going through this. We will all do our best to help them out. We are a very close family, thank God, so I hope all will be well. My parents will be with Austin the whole week, and my oldest sister from TN will be out here for the long weekend to help out as well.

    Another question is does anyone know how long it the police investigation can take for an accident like this? We thought we were in the clear, but our lawyer friend told us that they are probably still investigating and they could charge my dad with criminal negligence because it involved a firearm and someone was shot. But they know it was an accident, and nobody (obviously) wants to press charges, so do you think they would still do something to my dad? It just causes my family so much more stress to think of it because my dad is going through enough right now! He has to live with this and the guilt for the rest of his life, and I dont think he could take anymore. e's been with Austin from day 1 that it happened and he hasnt left his side. If they took him away from Austin I know he'd have a heart attack or a stroke or something worse. If anyone knows how the legalities work, please let me know! I would appreciate any info. you have! I want to know when we can breathe again and know that we are in the clear.

    Thank you everyone, for your help and great advice! I appreciate evreything so much.

    Georgia

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