DAD now in PAIN!!!
-
-
June 24, 2006 at 8:11 am
Hi, we are on 39 days and counting, my dad finally got out of CCU but is still on the respirator. He is improving a little bit everyday which is great, but he is in so much pain. My mom will try everything to get him comfortable by asking him several questions and he bangs his leg in frustration. My dad has lost 100 pounds but is still a little over 300. He hurts so bad and he can’t communicate with us, he still can’t open his eyes. I visit him at the hospital and feel so helpless because he gets so frustrated that we can’t figure out what he needs. Most of the time he wants something for the pain and when they give him something it only lasts for 2 hours. He doesn’t even sleep. Does anyone have any suggestions on pain management or communication when on a trac. Remember my dad can’t open his eyes so we are without sight also. Thanks for all your support one day at a time…..Erica & Courtney
-
June 24, 2006 at 8:45 am
erica,
he needs neurontin for his pain. 900 mg/day to start & increase by 300/day till pain stops. it’ll prolly make him sleep a lot till he gets used it it. 5600 mg/day is max. alphabet board to communicate. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 24, 2006 at 9:02 am
I agree with Gene. Neurontin for the pain. Since he can move his leg some, I would suggest yes/no questions. He can respond with one or two movements of his leg or foot. Try to make the questions as meaningful as possible to keep the frustration level low, and let him answer before moving to the next question.
Tonya Correll
-
June 24, 2006 at 4:55 pm
Hi Erica,
Progress is so slow in recovery from this, as long as he is getting better, even if it’s slow, then that is what we like to see. I hope they are giving him the max dosage of Neurontin that they can (as mentioned), that will help him a great deal with his pain with a side benefit of helping him sleep. All the best to you and Courtney and your Dad. Let me know if I can ever do anything to help.
Jerimy
-
June 24, 2006 at 5:07 pm
Okay, here’s a question I’ve been wondering about. Can a patient take neurontin when they’re on a ventilator? Do they make an IV form of it at all?
I hope your father gets well soon, Erica!
Shannon
-
June 24, 2006 at 7:16 pm
Im not sure what other pain meds were around when I was in ICU, but I was on morphine for a few weeks for my pain, needless to say It did the job quite well. The thing they were obviously worried about was addiction.
-
June 24, 2006 at 9:31 pm
Good question Shan, I just assumed there were alternate forms of Neurontin or Gabapentin.
Jer
-
June 25, 2006 at 9:55 am
I think Morphine is the standard. That’s what Ben was on while vented, and then put on Neurontin after coming off the ventilator. Ben was in really severe pain for several weeks, despite all the meds he was on.
Shannon
-
June 25, 2006 at 10:41 am
Shannon,
If I am remebering correctly, I was on Neurontin before I was off the ventilator. I think they crushed it up and put it in my feeding tube. Or it came in a liquid form. Not sure. All I know is I was in lots of pain and on morphine and other pain meds.Tonya Correll
-
June 25, 2006 at 10:55 am
Thanks, Tonya! I’m sorry you were in pain, but glad to know there was a way to give you the neurontin!
Shannon
-
June 25, 2006 at 5:37 pm
My mom is going to find out the dosage. He was on that medicine but we don’t know if is still on it. Thanks for your help I don’t think he was on the right dosage about. Will keep you all updated. What a long journey…Erica
-
June 25, 2006 at 7:36 pm
Keep us posted Erica, my thoughts and prayers are with you all.
Jerimy
-
June 25, 2006 at 10:53 pm
I’m sorry your dad is in so much pain. We all have diffrent pain thresholds, for me, I have a vary high tolerance for pain, to this point, I have been able to forgo pain meds. I feel vary lucky. For me, soothing sounds, like the lake, and birds singing help. I have been told that the shots of pain are a good sighn, my nervers are starting to fire. Ya, it sucks, but every day I get out of bed, dress my self and shower, is a victory.
See if they have a pain clinic in the hospital. A gental message, or a relaxing cd might help, anything to take your dads mind off the pain. I hope this helps.
Denette -
June 26, 2006 at 3:37 pm
erica, do the nurses or your family members try to open your dad’s eyelids? last month when i had my 4th paralysis event my lids wouldn’t work either. it is very frustrating to just hear voices and not be able to put a face to the voice, and not be aware of what is going on around. i finally just told my mom to lift my eyelids until i could get the hang of opening them myself. it took alittle work and was hard to find the right muscles to use to open them, but in one afternoon i was able to open my eyelids. it also caused my eyes to hurt and feel really dry or at times just water alot. if your dad has dry eyes make sure the nurses put drops or creme in them to help with the irritation from the lids hitting the eyes.
take care and my thoughts and prayers are with your dad and your family.
-
June 30, 2006 at 9:51 pm
Dilaudid, 2mg every 2 hours night and day did the trick for me. Made me sleepy too, but I was needing to sleep 15 hrs a day anyway, and pain relief was my main issue. On it for a month, and no, I never got addicted.
-
July 8, 2006 at 11:30 am
We are on day 54, after some research we found out that the main neuro only had my dad on neurontin as needed. Then another neuro came in and talked to my mom and decided to put him on it three times a day. The first neuro said it’s not a “proven” medication. Well the second doctor was a life savior because my dad’s pain is gone and he is back. He can open his eyes and use his finger to write letters on my arms and communicate with us. I was with him for the last two days and came to find out through the respiratory theripist that my dad has the Miller Fisher version. That’s why his eyes are so bad. He is still seeing double and is very sensitive to the light. He is working very hard trying to get off the repirator, and we are all very proud of him. The hardest part for me is the doctors, they don’t know much about this disease and don’t like to be given information from other people. You are at the mercy of the insurance company and the doctors of the hospital, and some of them are really bad. We have been at his side the whole time, my advice to everyone is don’t leave your loved one and continue to fight for them and don’t believe everything the doctor’s tell you they aren’t always right. You all helped us so much, we will never be able to thank you enough…it is a slow recovery but my dad is back and we love him very much, that’s all that matters. We will be with him every step of the way…one day at a time right…..:)
-
July 8, 2006 at 11:54 am
God bless you and your family
Stephen
-
July 8, 2006 at 12:28 pm
peace my friend.
-
July 8, 2006 at 12:51 pm
Hurray! Glad your father is doing so much better.
You are way ahead of the game by realizing that he should not be left alone at the hospital, and that you and your family will need to be his advocates.
Doctors who don’t want information from reliable informed sources are insecure or arrogant or lazy. Continue to give them information, and I would recommend that you give it to them in writing, whenever possible and insist that it be put into his medical records.
Make copies of relevant articles from good medical sources – you should find many on this Forum and give them to the doctors. Just be persistent and educate them without getting excited or confrontational, unless necessary.
Another good idea is to request the doctor’s information sheets from the Gillian Barre Foundation (look on home page of this site). Give the info. to his doctors.
Best wishes for your father’s quick recovery. Stay in touch with us at this site and ask questions whenever you need to.
-
July 8, 2006 at 3:33 pm
That is great news Erica, keep fighting for him. You are all in my thoughts and prayers.
-
July 8, 2006 at 8:06 pm
erica, i’m sooo happy for your dad and for you and your families strength to stand by him at all times. he is a very lucky and blessed man to have a family as dedicated as you all have been. keep up the great work, and yes it is one day at a time. stay positive and it will happen! hugs to your dad and your family!:)
-
