Big decision for dad, please help!!!!

    • Anonymous
      October 3, 2007 at 4:59 pm

      :confused: Okay my aunt was at the hospital with my dad today and the doctor told her that they were going to keep him in ICU for a while longer but we really need to start thinking about other facilities. The VA Hospital has 12 facilities associated with them in Dallas, Texas and the doctors have started checking on them for long term care. Anyways, basically the doctor said this and in the presence of my dad. He said those facilities won’t take patients that are on the respirator so we have a few options try and get him on medicaid so that we can find a facility that will take medicaid. Another option is that they can release him home into the care of someone 24hours a day and that person would have to take a class to know how to care for him and they would provide the bed and I guess whatever else is necesary. Anyways, after the doctor went out of the room my dad told my aunt to call me and my sister and that since my sister doesn’t work he wanted her to take care of him. Well honestly as much as I don’t want for him to go anywhere else but home I don’t feel that we would be equipped care for him. This is a big decision we’re are going to the hospital this evening and try to explain to him why we don’t think it’s a good idea for him to come home right now. He’s not in the shape to go home. Also, my sister has a husband and 3 kids and the same for myself and our youngest ones are 5 and 5 yrs old. Also, do I need to inquire about maybe giving my dad another IVIG blood cleanout and will it possibly help? I have read on some of these forums that a person has had more than one and what would be the case that my dad would possibly need more than one? Please give me some feedback on what to do….

    • Anonymous
      October 4, 2007 at 12:18 am

      Hi ssalin02,
      This only a suggestions. I am a vet myself so I would contact my VA Regional Office that is in your area and inquire about facilities that handles that situation. Or goto the va website and check for numbers and names to contact. And finally if none of that works contact the DVA in your area and they are usually in your regional office. Hope this helps you.

    • Anonymous
      October 4, 2007 at 8:58 am

      My FIL is home with us, he is semi mobile, meaning he is in a wheelchair and can feed himself. But I will tell you it is very, very tough to do it on your own. you will be with him 24hrs a day, if he wakes at night, you have to be there, if he needs help all day, you will not get a break. Explain to him you cnannot handle doing it all at home. You might get Visiting Nurse Service, but they dont give you 24 hour help, it is usually a few days a week. SO can you really work with that.

      Can that hospital discharge him if he is still on a respirator and so sick? maybe get a second opinion?

    • October 4, 2007 at 9:08 pm

      How can a hospital send anyone home on a respirator?
      Is this St. Mungos?
      After CCU, I went to a specialty hospital to wean off the vent. The care I got there would be extremely difficult to provide at home. Blue Cross paid for it.
      How would you suction mucus out of his lungs? You might as well have the paramedics park in front of the house.
      I think dad needs to get breathing on his own before coming home.
      Try to find a hospital that specializes in getting patients off the vent.
      The Lord bless you and keep you!
      GBS Aug’05

    • Anonymous
      October 4, 2007 at 11:46 pm

      i too thought about suctioning immediately. Even after i was weaned off the vent i would occasionally have trouble clearing my chest and would have to be suctioned. This is quite unpleasant for the patient and i can imagine it would be difficult for a family member to put their loved one through this. Dont even nurses need to be trained – i know some nurses couldnt suction and they had to wear sterile gloves on one hand and had to tuck the suction under their arm so they didnt touch it with non sterile glove etc. It was quite involved

      I know he is your dad and you will do whatever you can but it is a huge job even for those trained.

    • Anonymous
      October 5, 2007 at 12:26 am

      What is the reason for throwing him out soo soon? Since he is on the resp/vent he needs to be in the icu until he can be weaned off the vent. Getting more IVIG would do nothing for your Dad at this point, he is in recovery mode not damage mode, unless he has CIDP. He needs pt/ot therapy everyday, rest and rt to possibly check him to see if he is close to being weaned from the resp. Don’t push the weaning, it might take some time to accomplish that-not unusual at this point in his recovery. As for having him go home on the vent, it is a 24/7 job, not a job for Moms with young kids and families. Just think if your kids or any other kids come down with the flu/cold, you wouldn’t be able to be around them, or stay home with them and not be around your Dad until the threat of infection is gone. And if penumonia happens to start in your Dad’s lungs, which is common for vent patients, he’ll need even more specialized care. Its not easy doing the suctioning on family members, let alone on your own Dad. Do the medicaid route right away, it doesn’t take that long to get into the system-especially while he is on the vent. It might even cover more bills from previous months.
      I have Your Whole Family in My Prayers. Take Care.

    • Anonymous
      October 5, 2007 at 9:41 am

      I really appreciate all the feedback. First of all I want to know what rt is? I think it is Respiratory therapy but not sure. If so they are doing that every 2 hours with him. The social worker didn’t say that he would be moved right now but he wouldn’t be in ICU for a long time and we need to think ahead and that’s why she had told my aunt, dad, and grandma about the options of medicaid or going home. Well me and my sister went to see my dad at the hospital on Wednesday after work so we could break the news to him that we were not going to take the chance of taking him home on the respirator. Let me tell you, seriously, it looked like we just finished smoking something if you know what I mean because our eyes were so little and blood shot red from crying and trying to figure out how we would tell him in a way that he knew we were doing the best thing for him. I was very stunned because he actually handled it better than I thought. He told us that he loves us and he was going to go with whatever us two decided because he knows that we love him and we would make the right decision for him. Walking out of that hospital that night was the happiest I’ve been in a while. Anyways, I called the social worker yesterday and waiting for a call back, but I started thinking all this really doesn’t make sense. How could you send a patient home on a respirator if a facility with doctors and nurses won’t even take him with it. I have lots of questions for her when she calls back. The good news is that the respiratory therapist said he is progressing more and more everyday with his breathing and taking less of the respirator so that’s the positive side of things and he seems to be happier when he can hear himself talk becuase he doesn’t need the voice box to talk he does it on his own. Well I’m going back to work now and I will keep everyone updated.

      Thanks for all the support,


    • Anonymous
      October 5, 2007 at 10:18 am

      You and your sister made the right decision Sabrina. It sounds like your Dad is appreciative of you both being his health advocates and support staff! Yes rt stands for respiratory therapist. It sounds like his rt is getting him to the point of weaning, which is a good step in recovery! Big Hugs!
      It is customary for the social worker to advise about the future moves and facilities available to your Dad. I remember with a few of my hospitalizations when they came in and told me my options-I looked her in the eyes and said I won’t be needing them-I’m going home! The look and responce I got in return was priceless!:D And I actually only was transferred to a rehab hospital for an extended stay after the first event, All the other times I went directly home-a few times against what the drs wanted, but hey I know my body and I know what my family can do to help me better then what a rehab hospital or nursing home can do. And because I am just too stubborn.:D
      Keep us posted and Take care.

    • Anonymous
      October 6, 2007 at 9:49 am

      I have been told I’m not “normal” but I was in the CCU because the ICU was full , for 4 weeks. 13 days on the vent and lots of RT . They were going to put a trach in me if I hadn’t started to breath on the day I did. I had 6 plasmapherisis “plasma exchanges” and I don’t know how many IVIG’s while I was in the hospital but they gave me alot and I got 1 on the first monday of each monthe for 11 months after release. My NEURO diagnosed me over the phone so I really believe he’s pretty smart and I’ve done as he says ever since. My recovery has been amazing. I’m coming up on my 1 year anniversery of onset and they said my case was about as severe as they had ever seen. Totally paralized from the neck down in 48 hours. I really don’t see how they can just through your dad out asap if he is on a vent because it takes awhile to even get over a vent, because it has been on the swallowing muscles and they need re-hab as alot of other muscles that are effected.
      There very well could be a liability issue if they did in my opinion.
      How old is Dad and how long in the hospital and how long on the vent???
      Getting quality care is a necessity not a option in recovery of this gbs as refered to Getting Better Slowly. Also is he on social insecurity? I have to be on social insecurity and draw 24 checks which is 2 frickin years before medicare will kick in.2 years plus the 5 month wait for the check to start,….. they want a bankruptcy before they help.
      After being on the vent for as long as I was , even 6 weeks later I almost chocked to death on a very small piece of filet mignon, and had to get to the er and after 4 hours and 4,000.00 dollars they pushed it on into my stomach. So do not take the vent lightly because there is trauma going on in there with it everyday.

    • Anonymous
      October 6, 2007 at 11:09 pm

      Can you please tell me how you add a picture to your postings?



    • Anonymous
      October 8, 2007 at 9:56 am

      My father is 53yrs old he has been in the hospital since Aug 15th, 2007 and on the vent since Sept 9th, 2007. We are still working on getting him medicaid and have started looking into other facilities for him to go to to start receiving PT.

    • Anonymous
      October 8, 2007 at 10:12 am

      Hey everyone dad is actually doing better. Well I know what you mean when saying he will have good days and bad days. Saturday was actually a very good day for him. He smiled with me and my sister and my mom more than I have seen him smile in a long time. I think we actually wore him out. I got to hear him talk on his own and his voice was the same voice that I heard before he was admitted. He doesn’t have to use a voice box thing because there was no damage done to his vocal cords. The nurse went in there and deflated some little balloon thing and then he started talking to me for about 15mins and then she inflated it back when he was ready. I guess this is good right. The RT said that she takes him off the vent where he breathes on his own for about an hour a day and they are starting to increase that time depending on him if he can handle it so far so good. Yesterday I didn’t go to see him, but my sister told me that he wanted both of us there so he could tell us together, but since I wasn’t there he went ahead and told her that he was tired and he couldn’t do this anymore because he feels too much pain. My sister asked the nurse if they were giving him pain medicine and she said tylenol because we didn’t want him to have morphine or hydrocodeine. [B][SIZE=”3″]Anyways, I don’t want to be selfish and we want to help my dad but we didn’t like the morphine because he would start hellucinating and the hydrocodeine because he would always be sleepy and wouldn’t want to work with the PT or anyone. Does anyone have any suggestions on what he should be taking. I mean if we have to we will have them give him that as a last result but I would like to get some feedback from some of you. [/SIZE][/B]Well that was what he told my sister and she said after that he left it alone and he was fine afterwards.

      Thanks everyone for the support,


    • Anonymous
      October 8, 2007 at 11:11 am


      neurontin, up to 5600 mg/day, for neurological pain, not morphine nor hydrocodeine. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 8, 2007 at 2:24 pm

      Can you tell me how you put your picture in your postings at the signature part?

    • Anonymous
      October 8, 2007 at 9:19 pm

      I just wanted to add that you have to start the neurontin off at a lower dose and gradually build up as needed because otherwise neuronitn can make you really sleepy. It is also worth considering perhaps tylenol with codeine. this is not as strong as hydrocodone, but stronger than plain tylenol. Sometimes hydrocodone (vicodin/lortab) can also be given at a lower dose and not make someone sleepy, but still be enough for pain. It comes as a liquid or a half pill can be crushed (I assume he is not swallowing medicines yet and has a feeding tube, but may be wrong). One of the things I try to teach my students is that pain has to be controlled with some trial and error–to make the pain okay but the side effects not too worrisome to the patient. Since everyone is different, it is rare to get it “perfect” with the first attempt. Most side effects like sleepiness depend on the dose.

      One of the things to think about regarding pain is where is it. If it is, for example, pain from the trach site, a relatively acute pain, then narcotic pain medicines might be better. If it is from the GBS in the feet for example, it is a chronic type pain and likely to be around awhile, unfortunately. This needs a pain medicine for chronic pain like neurontin.

      Another important point is that there are lots of ways to make pain better and your dad should not be in so much pain that he wants to give up. Tell the doctors to start this trial process and enlist your dad’s help. I saw that the GBS Foundation has flash cards for communication. If he cannot talk much, try to get these or make your own cards for important things like this.

      I recently started on Lyrica and this has helped me a good deal. I have noticed that most people comment on neurontin and not Lyrica. I wonder does neurontin seem to help GBSer better or it is just that Lyrica has other issues (side effects, COST, etc). Anyway, I am really, really glad that it helped the pain in my feet and legs.

      With hope for cure of these diseases.

    • Anonymous
      October 8, 2007 at 9:20 pm

      If tylenol was all I was given, I wouldn’t want to be here either. He needs something more. Even if some things make him a bit sleepy. The pain can be unbareable. I feel you really need to rethink this and discuss this more with the doc. My heart cries thinking of the pain he may be in.

      What about neurontin and lyrica? Even if it makes him sleepy, which it might, your dads comfort should come first. He has a long road ahead of him, and there must be something other then tylenol that can help him.


    • Anonymous
      October 9, 2007 at 9:35 am


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    • Anonymous
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    • Anonymous
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