My somewhat similar scenario

August 13, 2008 at 1:03 pm

Sorry you’re in this situation, here’s my two cents, and I’m sure people may disagree. First, my background. At the time I was 46. GBS symptoms 3/16/05 and by early on 3/18/05, I was completely paralyzed and in ICU. Had a lot of the ‘stuff’ you mentioned from your brother’s case; ventilator, cathetor, feeding tube, pneumonia, tracheostomy, depression, plus ended up getting blood clots in legs that traveled, staph septicemia; was dropped during a transfer, also ended up with a “frozen shoulder” as a side effect as I was not being moved enought. I had an advantage if you call it that, in that I was kept under by what ever means necessary. (my wife kept a journal and has the complete list, I know fentanyl was one drug.)

My suggestions for you, keep a journal, what, when, who, numbers from vital signs etc. anything you can. After it was over, it was helpful to my recovery to go back and see that information. Maybe I’m morbid, but I would have also wanted pictures to rationalize to my self how I got where I was. Cause when I came out of it, I didn’t know how bad I was. I just knew I wasn’t where I was before I went in the hospital.

I was in ICU six weeks and have almost no recollection of that time. I do have some very vivid hallucinations though. As a result of the sedation the neurologists didn’t get a good read on me as they had no baseline. My wife has the distinct recollection of one of them preparing her for the fact that my mental state would be like that permanently. As often happened the nurses stepped in and told my wife it had more to do with the cumulative effects of the sedatives that I was now being weaned off of and that I needed time. I don’t remember the exact time frame they gave her, but I know it was almost exact. One factor was that unlike a lot of people who say they were in the best shape of their lives, I was obese, and the sedatives end up in the fatty tissues so it took longer with me. So here’s another suggestion, and I hope I don’t offend anyone. Have the family members / friends take care of the nurses and the aides. I had two friends who would come to visit and one of them had this down pat. He’d always show up with something and leave it at the desk and make sure they knew what room it came from. Often it was just a lot of Dunkin Donuts or other junk food. I feel it shows a few things, one that someone else besides the nurses / aides is there for the patient, and also that it’s a visible sign that they are appreciated. It didn’t help with all the staff, but it helped.

Have the friends / family keep limbs moving (check with staff due to tubes etc,) fingers, toes, as much as you can. My case was pretty bad too, but after six weeks in ICU and six weeks in rehab I was released and could walk short distances. Three months after that (six months after start) I was able to return to my desk job. Over the past 3 years I’ve improved, but still have the fatigue and have permanent nerve damage to both feet and my right hand (medial nerve – yes I was right handed.)

I’m not the first to say it that while we may have a lot in common with the disease, no two cases are alike.

Best of luck to you all!