dragonflydi
Active member
- Joined
- Oct 19, 2010
- Messages
- 79
- Reason
- CALS
- Country
- US
- State
- NY
- City
- Fredonia
Well, we survived our first visit to the emergency room. Thanks to everyone on these Forums who posted info about this in the past. I felt we were very well-prepared. Tom was suffering from severe constipation (8 days) and his Visiting Nurse said he should go to the emergency room since all the remedies he had tried were not working. On the recommendation of someone on this forum, I brought our emergency file with all his doctor info, list of meds, typed history of the problem and all his "stuff" (machines, meds, etc.) in case they kept him overnight. Because of previous postings on this site, I wasn't surprised when they said they had never seen an external vent machine like the one he has, nor was I surprised when they asked him to get up on the bed from his PWC. They seemed surprised when he said he couldn't move his legs or torso. You are all so right: they know NOTHING about ALS. When they finally lifted him up onto the bed they kind of "dumped" him, not realizing that he couldn't use his own muscles to let himself down easily. His back went into spasm and they were simply at a loss. I had to do most of the prep work for the procedure: undress him, re-hook him to the vent, move the wheelchair, etc. They gave him three soap enemas with a very long tube and very little results. He was so distressed my heart just broke. Then they gave him magnesium citrate and sent him home with a package of Kristalose to take the next morning if nothing was happening. Nothing was happening, so he took it. Not to give TMI but Oh My did it work. I have gained such respect and admiration for nurses who go through this every day. I couldn't leave him all day so I had to call on friends to get us some pads, Depends, and cleanup stuff. What a day. But today was much better. He ate for the first time in days and feels weak but fine. Whew. Again, thanks to folks on this forum, it was easier than it might have been. --Diane