May 4th

John had a bad night last night. He slept very little. He also did not sleep in this morning. I expected that that would result in a bad day - but it has been one of the better ones.
I decided to give him his meds and feeding every two and a half rather than three hours apart. Makes it harder to remember the timings but seemed to help for most of the day. But he had a really bad session this evening - said he just could not get his breath at all. However, it passed within about 20 minutes. There seems to be no rhyme or reason - sometimes they work - sometimes they do not.
Went to the GP today as recommended by the neurologist and got a presciption for meds IN CASE he has a bacteria in the intestinal tract that is preventing the drugs from being absorbed. London Drugs had to send one of them out to a special pharmacy to have it made into a liquid form for me to give to John through the tube. I will get them tomorrow and we will start on the added regime of two antibiotics twice a day with food and another one a half hour before his breakfast. My timer only has 12 settings - I need about 18 at this point!!!
I guess you could say it was a one thumbs up day - not great but not too bad.