On a different note, Dear Son is having some issues again. Last Wednesday, I noticed that Dear Son was retaining fluid and his stools were getting harder. In addition, his urinations had decreased. I thought I had discovered the source of the issue and was giving him more Miralax to get him back to normal. By Friday evening however, Dear Son started to cry out in pain quite a bit. His stomach was not only bloated but hard. I could feel a mass in there when I pushed on it so I knew that was a problem. I decided to remove his Scopolamine patch and manage his secretions with an anti-histamine that the doctor had recommended a while back. It helps dry up secretions in his throat (his throat muscles are deteriorating and he can't swallow so he'll choke on his own saliva if he doesn't have anything to dry it up). I started to get a little nervous when I was feeding him via the gtube since all of this fluid was going in but nothing was coming out (urinations). Although I was fairly confident I was doing the right things, if I was wrong, his intestine could burst and he'd die of sepsis. (Dear Son had similar issues earlier in the year when he had urinary retention due to the Scopolamine patch. )
I decided to page the doctor to make sure my plan of action was correct. I wasn't sure if he needed to get an x-ray (to see if there is stool in there) or if I needed to decrease the rate of his feedings. The doctor recommended that I decrease the rate of the feeding and give him an enema.
Things improved on Saturday and things started to clear out a bit. He was urinating regularly and had a few small bowel movements. On Sunday things slowed down and by today, he hadn't had a urination in some 30 hours, and that was after he had an enema. I paged the doctor late this afternoon and he made some suggestions so hopefully Dear Son will be feeling better soon.
I probably won't post for the next day or so since I have my hands full so to speak but will try to resume posting later this week.