Update on Andy
AnonymousOctober 14, 2008 at 12:48 pm
Hi – Just wanted to give an update on my brother Andy’s condition.
He was finally able to come home from the hospital on 9/29. 😀 We are so happy to have him home and it’s very nice to drive 10 minutes to see him at my mom/dad’s house instead of 50 minutes at the hospital. They have converted the living room into Andy’s room with his hospital bed, walker, wheelchair, and port-a-potty.
Andy is now able to walk short distances using a walker. He doesn’t have a lot of movement yet in his feet but is doing so much better than before. His depression has gotten much better since getting out of the hospital. He is doing physical therapy on an outpatient basis and they are going to let him get in the pool this Friday. He’s looking forward to that.
He’s still having a huge problem with acne. Have any of you experienced this? This wasn’t an issue pre-GBS but started in the hospital and still continues to be a problem. He is keeping his face clean and even uses Clearasil daily but to no avail. He is also still so thin. I hope he is able to gain more and more of his muscle mass back as soon as possible. According to his physical therapist, his grip is improving by the week so that is good news. His new baby is due any any day now so I am extremely excited about becoming an Aunt again. 😮
More good news: his insurance paid his entire stay in ICU. We haven’t received all the of the bills yet from the skilled nursing facility so we’re not sure what’s involved there but we are so thankful as the ICU bills were in excess of $400,000.
Here’s my first post in case you don’t remember Andy’s situation:
Hi – I am a new member. My brother Andy is 25 and has been stricken with GBS. Mom and I have been at his side 24/7 since the beginning of this illness (July 14th) and have gone through all the ups and downs with him. Following is a short synopsis.
Andy is such a great man. His daughter will be two this Halloween and he has another daughter on the way, due October 28th this year. He is a very respectful, fun, energetic, happy-go-lucky, friendly kid that loves his family and friends. Prior to July 14th he had a sore throat and fever on and off for a couple of weeks and some all around symptoms of feeling “off or not quite 100 %”. On July 12th he spent the day at my house with the rest of my family having a pool party. He rode his motorcycle down (one of his passions) and we took a nice picture of him. On July 14th, his hands and feet started feeling numb. He went to the doctors again and they said it was just a virus. On July 15th he went back to the doctors as the tingling was traveling up his legs and they told him again, just a virus. We took him to the emergency room later that day and they said they thought it was GBS – what a shock. By the time they transferred him by ambulance to a hospital an hour away he could no longer stand, even though he had walked into the hospital just hours before. Then things went downhill quickly. Complete paralysis, inability to blink, ventilator, cathetor, feeding tube, pneumonia, tracheostomy, depression…needless to say it has been very frustrating and humbling for the family, not to mention the toll it has taken on Andy. We finally had to ask both neurologists to stop saying that he was the worst GBS case they have seen in 10 years as it was just so disheartening. He is still in the ICU and has worked his tracheostomy loose so that he can do a thick whisper to the nurses dismay. One of the things he said is that it feels like someone has tied a rope inside his stomach and is pulling it really tight. He’s had a lot of problems with constipation that they have tried to treat with Senecot (no luck) enemas (usually no luck) and other things. They’ve had the most luck with this medicine that they use on other patients who are about to undergo a colostomy. Any other ideas to help him out in this respect?
Also, another problem lately has been insomnia. He will literally stay awake for three days on end only sleeping for three hours or so total the entire three days. Is this a normal side effect of GBS? They have since tried switching his morphine to another narcotic to cause drowsiness (starts with an L but I can’t remember it right now) but it causes him to be very confused. For instance he woke up crying and whispered that he wanted to check out of the Guthrie (name of hospital) hotel. I really hate to see him in that confused state. I know it’s not about me and I have completely given myself to “whatever is best for Andy” but is there anything you can recommend that I can talk to his dr’s about trying? They have also tried Ambien with no success.
Lastly, maybe I should have posted this on the caregivers site but I really want to hear from those who are afflicted with GBS. How can I do more to help?? What is it that you really wish your loved one would have done for you when you were at rock bottom that I can do to help out my brother?
Well, I guess that wasn’t such a short synopsis, sorry. I do need to say that I have been in constant contact with this board since finding it at the onset of Andy’s illness and that I cherish each and every one of you and the invaluable information you bring to me and the rest of the world. God bless each of you and may he work miracles in your recoveries. Thank you for being brave enough to share your experiences with us so that we may all learn from one another. Please keep my brother in your prayers. He is most certainly one of the good guys. 🙂
Thanks for allowing me to be a part of the board.
AnonymousOctober 14, 2008 at 3:02 pm
Hi and thanks for giving us an update on Andy’s progress! When I get “blue” the people around me say, look how far you have come. So you are not where you want to be BUT you are not where you were… Each day a little stronger. Keep up the good work Andy and Andy’s caregivers!
October 14, 2008 at 3:06 pm
Great news Andy’s my bro!! My 11 y/o has cidp, the chronic form of gbs. Since he has gbs, I assume he was not on prednisone, (not supposed to use steroids for gbs) but in case he was, that could be a cause for acne. With this disease, ANYTHING is possible, the acne could just be an immune response. Has a dermatoligist dx as acne? Maybe the morphine is causing some sort of reaction? About the morphine, I am sure you know it is highly addictive, surpriced they used it for so long. It is not really a pain medication for nerve pain specifically. Is the new medicine that starts with a L called lyrica? If so that is used by many on the site for nerve pain. Neurotnin or gaberpatin (spelling) is as well. It may take a while to figure out what pain medication works best for your bro, evryone is different!!! The recovery too is different for everyone. But the common thread that most on this site w/gbs have is that the recovery takes time and patience. You kind of asked for info from those w/gbs regarding what you could do. I don’t fit that qualification as I am a momof a cidp kid, but we too have Halloween as a anniversary so to speak. Two years in a row, Halloween was a huge marker regarding progress. So we make a big deal about trick or treating. Maybe you could turn your brothers wheel chair into some sort of costume and dreass you and him and the kids up and go trick or treating together. I bet that might make him feel included? Who knows, I could be way off. You sind like an awesome sibling, I am sure you and your family will know exactly what to do regarding keeping your brothers spirits up. BTW, are you a bro or a sis?
Dawn Kevies mom
AnonymousOctober 14, 2008 at 3:22 pm
Thanks for the update. That’s great news. Its so nice to get home after being in the hopsital that long. You made a comment about him having lost so much weight. Give him a little time at home and I bet he will regain it. The food is much better at home than in the hospital. Also as he is able to move around more his muscles mass will come back.
As far as the acne is concerned, I didn’t have that. I did have rashes that turned out to be a fungus. I guess all the immunosuppression allowed them to flourish. If it were me I would just leave it alone for awhile as maybe it is a result of stress or diet and will take care of itself.
I’m glad to hear Andy is home and hope all goes well from here on in. Its exciting to think he will be a Dad in just a bit. Keep us posted. Pictures would be great too!
AnonymousOctober 14, 2008 at 4:43 pm
What great news! You are one terrific sister. I am excited for Andy and looking forward to meeting him here. I know he is going to want to touch base at some point with others who understand his stress and illness. I hope it’s us! We have a great bunch of folks here in our GBS/CIDP family and we are always ready to make room for more!
AnonymousOctober 14, 2008 at 9:49 pm
You guys are [B]awesome[/B]! You are such a wonderful support system for each other and for new members. What would the newbies do without your support and guidance? Even though each person’s struggle with GBS is different, it helps so much to get advice from someone who’s been through it before.
I LOVE THIS: “So you are not where you want to be BUT you are not where you were… Each day a little stronger.” Thank you for that. I can’t wait to mention it to Andy. It is so inspirational!
Dawn – as a mother (of 4) I can’t imagine the heartbreak you have endured watching your son go throup CIDP. Mothers as a whole are strong but you give the word strong a new meaning. I know you would give anything to switch places with him. Andy has not seen a dermatologist but that is a good suggestion. Gaberpatin is the medicine he is on right now and seems to be working pretty well. I believe this is a generic form of Lyrica, right? I am so stoked about Halloween now…what a great idea to all dress up together and wheel him along!!!! Why didn’t I think of that? I’m going to call him first thing in the morning and run it by him.
I can’t wait until Andy can finally get on this board. His hands aren’t working well enough to type yet but I have shared so much information with him that all of you have shared with me. You are all too nice to say that I am a good sister. I’m sure that I’ve done nothing you wouldn’t have done for your family. You guys take it one step further by helping out total strangers. There is nothing more compassionate than that.
When Andy was in the hospital and we were doing the 24/7 care there was a couple of days when it got to be almost unbearable and things were looking very bleak. We were worried that either the pneumonia, high blood pressure or high heart rate would wind up – you know. At one point, I overheard two of the nurses talking down the hall when I was leaving for a break and they said “the GBS won’t kill him but the pneumonia could”. Sometime late that night I was so emotional and it was strange because we were all emotional at the beginning and then mom and I sort of toughened up and became the “Andy police”. We posted a sign that said if you feel sad while visiting please step out of the room – your attitude influences attitude. (we did finally wind up stopping visitors though aside from immediate family.) So, we had been tough for days. When I would come home and see my husband I’d shed some tears but the minute I entered the hospital it was business as usual and I just assumed the fiercely protective stance which kept my emotions at bay.
Anyway, sometime late this night I started crying and just couldn’t stop. I was so mad at myself because I was “on duty” and I didn’t want a nurse coming in and asking me to step outside, especially when it was my own rule. I had literally spent hours watching his vitals like a hawk. I kept flashing back to our childhood and other times and finally I just started writing. Within about 5 minutes I had filled one side of a sheet of paper and then filled about 1/2 of the other side with a poem. The next time I visit, I’ll ask my mom if I can have a copy and post it (maybe it belongs on the caregiver’s forum instead?). Not sure why, but it’s so easy to express these things here. I’m still just so thankful to have him back. It really helped me to put some things in perspective: work, home, problems that really aren’t problems when you think about it, money, etc.
Ok, I guess I’m rambling so I’ll say good-night and talk to you soon. 🙂
AnonymousOctober 15, 2008 at 11:47 am
What a blessing to hear that your brother is on the road to recovery. My son had GBS in January 2008 and his symptoms were very similar to Andy’s. He was paralyzed from the shoulders down, had a trach, had a feeding tube, and developed pneumonia. He was in ICU for 5 1/2 weeks and in a Rehab for 10 1/2 weeks. It takes awhile but things do get better and better. My son lost a little more than 40 pounds but he was tall and skinny to start with so it was shocking to see him so very skinny. He too had more problems with his complexion but it seemed to be associated with his nutrition. Once he started to eat better and gain some of his weight back, his skin began to clear up. Another thing that seemed to be part of the problem was the fact that he always felt hot- we could not keep the temp in his room cool enough. I guess the autonomic system took awhile to repair as well. Anyway, he sweated alot at times and seemed to have greasier skin because of that too. We used “Oxy Clean” pads several times a day when that was going on.
My son’s good news is he has been home since the beginning of May and has gained his weight back, is walking/running/driving with no problem, graduated from high school with his class, started fulltime at our local community college, and has recently started a part time job (Yeah!) Tomorrow will be his nineteenth birthday….just a few months ago it was impossible to look forward to this milestone.
I know Andy, you and all of his family are so happpy to have him back at home!
October 15, 2008 at 12:13 pm
Hi Andy’s my bro,
Gaberpattine (spelling) I THINK is the generic for neurotnin. If it does not work, ask the doc to up the amount. I have no experience with this, but from reading here, those w/gbs go as high as 3600 mg. Also, most say the drowsy type feelings do get better. Lyrica is another drug used often by gbs people on the site. Someone with experience in these drugs will sureley reply if you inquire. Don’t know what the money situation is, don’t even know how much it costs, but you can get voice activated “stuff” (my lingo for my limited computer knowledge) for the computer. Maybe you can contact a member named Norb under the members list. Private message him if you are interested, I think he has that “stuff”. He is a really nice guy and I bet would be happy to help. Maybe even insurance would pay for it? You never know unless you ask, heck, call microsoft or apple, maybe they would donate it or give a discount?? I bet it would make Andy feel more in control if he could get online. I have this vision of your whole familly going trick or treating, here it goes. Everyone is wrapped like mummies in torn white sheet strips, bright orange pumpkins in hand, your mom or his wife pushing Andy and the kids sitting on his lap hitching a ride. Ok, time to put the overactive imagination away. Don’t know why, I just have a really good feeling about Andy’s long term outcome based on the familial support he has. Go Andy’s my bro family. About your comment not being able to imagine cidp/gbs with a child. I was a basket case in the beginning(my husband and older son would argue I still am, lol) but it really does get better. In a weird way,I really do feel that one weakness that life throws at you brings you other stregnths tenfold, you just have to be looking for those stregnths. It is kind of hard to explain. We just try to plug along, look for the best and I come here to whine or get encouragement when I fall in my ruts. It is a really awesome bunch here on all kinds of fronts. Best of luck!
Dawn Kevies mom
AnonymousOctober 15, 2008 at 5:12 pm
Hey Andy’s Sis, That is Great News! Glad to hear Andy is recovering. Please give him my best and tell him I’m sending positive vibes his way!:) Congrats on the Baby to be!! Please keep us updated on everything. Gabapentin is good for nerve pain, is safe and non addictive, its generic for Neurontin, which is the brother brand to Lyrica. The first Halloween after my gbs/cidp struck, I was pushed around the neighbor hood by my mom, so I wouldn’t miss seeing my 2 kids enjoy their tricks and treats. Now I walk it with my decorated cane and I even dress up-the monster hands and mask. Take care.
AnonymousOctober 15, 2008 at 11:34 pm
It is great news that Andy is home from the hospital and that he is seeing life looking up with walking. We are all waiting for news of the new little one–his daughter–we are a great cyber-family!
Acne can come after stress and everyone know he has had a good deal of that–as well as autonomic changes as someone else mentioned.
I also wanted to say how much I admire you as sister and your fierce protection of him. I am glad that he is well enough that you could catch up emotionally with all that happened. It is never weakness to cry for those you love–it is rather a sign of the great love that you are able to share in your family and how strong you all are because of that love.
WithHope for a cure of these diseases
AnonymousOctober 17, 2008 at 12:50 am
ANDY !!! Sounds like Andy had a trip about like meine. My Dr. gave me steroid shots for 6 months after coming home. The exercise, what I could do, and the steroids built the muscle mass back pretty quick and it also gave me more strength to do more exercise. After 6 months passed the Dr patted me on the stomach and said “what is this,” and decided I needed no more weight gain and cut the steroids at that point. By springtime you and Andy will be surprised at how far he has come. He will be a totally different man by then. Keep the faith and find out what medicines work best (for him.)
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