worried Posted June 22, 2007 Share Posted June 22, 2007 My son had major brain stem strokes 7 monthes ago. The first nuring home he was in didn't work his musles enough and now the musles in his left leg and hands have shortened and he can not straighten his leg or hands. I was tring to get him botox treatments ,but his insurance denined the botox treatment. I was wondering if anyone knows about any type of supplements would help to relax the musles. He has a feeding tube but he is allowed to eat pudding and have necture juices once a day. I don't know what to do. He has had his trac capped for 2 monthes and is breathing on his own, he is also eating food although I am feeding him but he lifts his head up and puts his mouth around the spoon. Some of his doctors want me to let him go by straving him and the others wanted me to try the botox treatments to loosen up his musles but since they were denined I don't know what to do. He's down to 87 lbs with alot of bed sores. Should I let him go and if so how do I live with myself. Link to comment Share on other sites More sharing options...
dstraugh Posted June 22, 2007 Share Posted June 22, 2007 Hi, With the help of the medical team, try filing an appeal with the insurance company for the Botox treatments - especially if the current medical team believes it will help. Is it the current docs as well who are suggesting letting him go? I wouldn't give up hope - miracles can and do occur. :hug: Link to comment Share on other sites More sharing options...
worried Posted June 22, 2007 Author Share Posted June 22, 2007 Primary Doctor and Hospital feel that it would be best to let him go, but spalastic doctors feel that botox would help him but he was denied and I don't know if I can wait another 6 weeks to get denined again that is even if the spalastic doctors appeal. Link to comment Share on other sites More sharing options...
RLT Posted June 22, 2007 Share Posted June 22, 2007 How all the Mom in me aches for you. I cannot imagine the tugs and pulls on your heart at this difficult time. After my husband was out of the hospital, he and I decided that we would never put him through that again but rather when his time came allow him to go quietly at home. But he is 75. I always believed I would do quite the opposite for my children. My teenage daughter challenged me on this a couple weeks ago though and I was surprised. She had just met a girl who survived, because of heroic measures, from a car accident. This made my daughter do a lot of soul searching and she came and asked me to do the same for her as I would for my husband. What ever decision you make never believe you are giving up. You sound like you have a lot of love for your son and your heart is going to direct you to give him the best no matter what the doctors say. Link to comment Share on other sites More sharing options...
fking Posted June 23, 2007 Share Posted June 23, 2007 Welcome Worried, I think if you just work with his arm and leg like a therapist would several times a day that would help. He has to get out of bed if possible to avoid bed sores and a little walking if thats also possible. No way I could let go and you couldn't live with yourself. Strength comes from movement of the limbs. I try to stretch my arm and leg night and day but I see a little bend. The worse shortening is in my little finger and wrist. I wear a wrist brace at night and try to lay with it straight. With his brainstem stroke, I just don't know what's best. Mine was a bleed so what I said works for me since I am not in therapy at this time. Link to comment Share on other sites More sharing options...
bstockman Posted June 23, 2007 Share Posted June 23, 2007 I feel for you, I lost a child to cancer, he had gone thru chemo and was in remission a short time.. There was nothing else to do.. It is VERY hard. Sometimes that is all you can do Love them with your heart... and know when it is time to let go. If you speak with the specialist is there a specialized rehab unit you can put him in. Also they have water filled mattresses that move. like gentle waves to help from getting pressure sores. Your son seems to be responsive when you feed him. How are his other responses? Maybe you could ask for a Physical Therapist to come a few times a week. Watch them and repeat the exercises they do with him. I have a poem written by a father who's daughter was dying. I don't remember all of it but it starts. I'll lend you for a little while, A child of mine He said. For you to LOVE the while he's here, and mourn for when he's dead It may be 6 or 7 years or 22 or 3, but will you, till I come to call Take care of him for me. I will try to find the poem ... and e mail it to you. Warmest hugs to you and your son. Link to comment Share on other sites More sharing options...
kanderson Posted June 23, 2007 Share Posted June 23, 2007 worried, i would do anything possible to help him regardless of what the drs say. they don't know everything and they are not god. try what fred said about working his arms and legs. appeal to the ins co. if he is breathing on his own, that is a good sign, the facility he is at should be getting him up and turning him every 2hrs to prevent the bedsores and massaging area around the sores to get blood flow to the sores so they can heal nutrition would help also, he needs to gain weight. as we were talking about last night in chat. i can imagine how hard this is on you. you will be the one to make the ultimate decision. i would never stop trying as donna said miracles do happen. your family is in my thoughts and prayers. when the time comes, you will know in your heart what to do. i hope you don't have to make that decision. never give up hope. ((((hugs)))) to you. kanderson Link to comment Share on other sites More sharing options...
worried Posted June 23, 2007 Author Share Posted June 23, 2007 Thanks to everyone . Last night I broke down and told my husband what I was faced with see I've been holding everything in so not to worry him, because he has a hard time faceing Chris. He had no ideal what the doctors asked me to do and when I told him he told me not to give up and he would try to visit with Chris once a week to help me out. He can't forget about what Chris was like befour the accident and I told him that he just has to love who Chris is now and forget what was. Chris has made it through so many things over the past 7 monthes and he has made so many improvements like breathing on his own and eating. So yes I'm gonna wait for the ins. appeal and I'm going to continue to work with Chris I don't think that gods is ready to take him yet because he has had alot of chances to do it but didn't. Thanks again everyone wish me luck. Link to comment Share on other sites More sharing options...
dstraugh Posted June 23, 2007 Share Posted June 23, 2007 Tell Chris that we're all in his corner and he is in our thoughts and prayers. And (((hugs))) to you as you stand by his side. We're here for you. Do you have other family and friends for support? Remember, too, to take care of yourself during all this. You won't be any good to Chris or yourself if you are not physically and emotionally healthy. May I suggest starting a blog within in our Blog Community. Blogging is therapeutic. You are in a safe place here. Link to comment Share on other sites More sharing options...
lisas Posted June 24, 2007 Share Posted June 24, 2007 Worried, I can totally relate to what you're going through. How old is your son? My daughter had a massive stroke on 2/17/06. She was 22. The doctors told us for several days she would not make it. But I'm happy to say that she is with us today. We tried Botox 3 different times. It hasn't helped. Rachel has a medicaid card. It covered the injections. The Botox has helped other people though. Rachel was on one of the water beds while in the hospital and rehab for 56 days. It helped so much. She has 1 tiny red spot, but it went away. Never give up hope. My daughter is living proof that with lots of prayer, life can prevail. My prayers go out to you. :friends: Link to comment Share on other sites More sharing options...
myhome Posted June 24, 2007 Share Posted June 24, 2007 Hi , I can't imagine the heartache you must be going through, and you had no one to share your burden with. I'm glad to see that your husband is going to visit him more. As a father I don't know what I'd do if it was me, and I had to make that decision for my son. If you can, get a second opinion, doctors are not always correct in their diagnose. What are called miracles happen everyday, as many on this board can attest to, so try not to give up. My prayers are with you. Stu Link to comment Share on other sites More sharing options...
worried Posted November 10, 2007 Author Share Posted November 10, 2007 Thanks to everyone on stroke net thanks for your support I didn't give up hope on Chris. A couple weeks after this post Chris started to come around although it was alot of work for both of us I continued to make him work. At first I was guiding him and then he started to do things on his own. I would put the food on his spoon and guide it to his mouth and then he started doing it. Then I showed him how to take things out of my hand and he started to do it. The best gift was given to me one day while I was working with Chris I decided to give him a break and he reached down and picked up one of his toys and looked at it and then looked at me I had tears in my eyes He made me so very proud of him. For the first I knew he understood what all the hard work was for. I got all of these things on video and showed his doctor and asked for more rehab. He said Chris wasn't do enough for rehab. At first I was upset and then I remembered what everyone said on here about how the doctors don't know everything, so I decided to look around at the rehab in our areas and sent them Chris video. Last week a doctor at the Children's intitute called me and wanted to see Chris. We went in to see her she said she was really impressed with the video and told me that she was able to get Chris approved into the intitute even though he was over the age limit. She said she really feels they can help Chris and she told me she was going to fight for Chris's Botox and try to find a voice for Chris by using a voice box. My prayers are starting to get answered and I wanted to thank everyone for their help. I guess god wanted me to find friends like you to get me through the tough times and to allow you all to give me the hope to go on. THANKS AGAIN AND GOD BLESS EVERYONE HERE!!!! :Clap-Hands: :Clap-Hands: :You-Rock: :signthankspin: Link to comment Share on other sites More sharing options...
dstraugh Posted November 10, 2007 Share Posted November 10, 2007 Thank you so much for the update. Good to hear of the progress Chris has made and that he was accepted at the Children's Institute. My continued thoughts and prayers are with him to continue making progress and for patience for the medical team to not give up and for your continued strength as you advocate for your son. Please remember to be sure to take of yourself as well to maintain your strength for the both of you. Link to comment Share on other sites More sharing options...
kanderson Posted November 10, 2007 Share Posted November 10, 2007 wow, that is terrific news about chris. hard work and determination do pay off. i will keep your family in my prayers and i hope chris continues to improve at his new facility. we all are in his corner. god bless and keep up the good work on being his advocate. as donna said, do take care of yourself also. keep us posted on his progress too. Link to comment Share on other sites More sharing options...
workngrl50 Posted November 21, 2007 Share Posted November 21, 2007 What an inspiration your story is to me! Thanx so much for posting it. I'll keep you and your son in my prayers as well and PLEASE continue to keep us updated on your progress. Sincerely, Lorri Link to comment Share on other sites More sharing options...
lisas Posted November 24, 2007 Share Posted November 24, 2007 I'M SO HAPPY TO HEAR ABOUT CHRIS AND HIS PROGRESS. IT TAKES TIME, BUT IT'S SO WORTH THE LITTLE IMPROVEMENTS THAT ARE NOTED EACH DAY OR SO. KEEP UP THE FAITH AND KEEP US POSTED WHEN YOU CAN. Link to comment Share on other sites More sharing options...
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