Ryan is getting some rest this morning after I
drugged gave him some medicine called Midazolam that is just like valium. It relaxes his muscles and helps him sleep. It is also his rescue medicine for seizures. Ryan has been showing signs of stomach issues again. I don't know if it is the gastroparesis again or the urinary thing with his bladder. He hasn't been tolerating his full feeding since his RSV and pneumonia. When I laid him down last night he started crying at 10:30pm so I turned his rate down to 10ml an hour when he normally gets 32ml hour. He woke me up at 5:30am screaming. I vented his stomach to get the air out and then I tried to cath him but he had already urinated in his diaper, so no luck there. Ryan has been urinating normally and I have not seen any signs of retention so I really don't feel like it is his bladder this time. I just don't know because gastroparesis and bladder retention have the same symptoms. Anyway, after figuring out that he was having severe reflux and gas, I gave him some of his muscle relaxer to help him sleep. And here we are in this moment right now...
I am going to call his GI doctor today and see what he wants me to do. I plan on giving him an enema today and I think we put myralax in every feeding last time but I can't remember (that is why I will call the GI). Last time they put him on an antibiotic called arythrimyicin and he did not tolerate it at all. We will see what he wants me to do.
I had him all ready to go back to school today. I had called the nurse at school and went over all of the changes and took time writing a note to his teacher and packing his bag. I was nervous about him going back to school but now he isn't going. I guess we will try again later in the week when he is HOPEFULLY feeling better.
I make myself crazy wracking my brain trying to figure out what might be wrong with Ryan and what I need to do to help him when something is wrong.
The care he gets is crucial to his recovery...obviously!
I just want him to be better!
Please pray for him and those of us who care for him daily.