I’m terrified

August 16, 2006 at 8:47 am

Juli, My husband who was 60 and in excellent health when his GB set in all in one day on June 4, 2006 has been totally paralyzed and on a vent and stomach tube since then. He spent one month in a large hospital ICU, was transfered to a rehab hospital’s medical floor where he pretty much got ICU treatment but more daily rehab for a month. Then he was declared stable and transfered to a nursing home like vent assist unit at the same rehab hospital the first of August. The transfer was disastrous because he wasn’t stable and really needed ICU care and he had cardiac arrest. A friend was visiting and essentially saved John’s life. He is now in ICU in a different large city hospital. He started to have slight movement of his head at six weeks and now after two and a half months he can slightly move his mouth, and head, and has regained control of his eye lids. After reading about your patient being in the shape John is in for so long, I am terrified that this is going to go on and on.

The ICU’s did stretch and do range of motion on JOhn daily, but I think only twice a day and not for very long at each session. Only the rehab hospital actually put him in a sling and had him sitting in a special wheelchair twice a day for several hours each time. One of the ICU’s cranked his bed up into almost a sitting position.

He is in pain a lot – mostly burning pain in his legs and arms which seems to be relieved most by motion (limbs being moved by someone else) and gentle massage. He is also being given neurotin, morphine, and percoset. Other GB patients who have been in JOhn’s position and came out of it have described the pain where you can’t stand to be touched. He hasn’t had that kind of pain yet. From what they tell me, this comes just before more movement sets in.

From our experience with this the main thing that a patient needs is for a therapist who will take the time to communicate with the patient and truly respond to what the patient says. John can communicate very clearly by blinking his eyes as someone spells or to answer yes or no to questions. He can say whether he needs or wants pain medication and can ask for massage or movement. The hospital workers he thinks are “bad” are the ones who won’t look at his eyes and won’t take the time and effort (yes it is laborious, energy sapping and time consuming to communicate with a totally paralyzed person) to give him a chance to tell them what he feels and needs.

A friend who was in John’s position in 2002 and is now recovered and who spent months in the ICU told me that there did come a time where she couldn’t stand anything touching her. At first massage helped, but later it was painful. She said that they wanted to put splints on her hands and she refused them because it hurt too much. Now, she has recovered nearly everything except the use of two fingers on each hand. She believes her lack of or slow recovery of the fingers and hand troubles is because she refused the splints. She advised John to cooperate with and trust his physical therapists because they really do know what they are doing.

The pain medicine is necessary but it is like walking a tightrope. Too much pain med and their heart and blood pressure fluctuates dangerously. Also, and we don’t know this, we think it slows down and inhibits your ability to move. It also causes hallucinations in some people. John hasn’t had them. His friend did. He often refuses morphine because he doesn’t like the way it makes him feel.

Listen to your patients. Even when rushed, try very hard to give them the time they need to communicate. This not only insures that they have a better chance of being made safe and comfortable, but it can save their life. It also is an outlet for their trapped spirit and has to help prevent depression.

I think you will be a good therapist because you are taking the time to ask patients and their families how they feel and what they know.

Carolyn Baker