Tuesday

We met with the Nutritionist today to go through everything needed for discharge. There's a whole list of things to sort but we're aiming for next Tuesday - yippee!!!

Before that happens, certain things have to be done:

1. Organise the feed and equipment delivery
2. Teach us how to connect/disconnect the feed and clean the tube which goes into the intestine.
3. Organise all the drugs.
4. Get Michael to drink more.

No. 4 is the hardest of all to organise - but apparently this is quite usual for all patients. The most he's had in a day is about one glass. He really needs to have 1 litre of fluid a day. As the Nutritionist explained - most people don't drink enough but it doesn't really matter. With the tacrolimus (anti-rejection) it's imperative to drink plenty as it can affect the kidneys. So this is the task ahead for the next few days. He can put the fluids through the tube into the stomach but it would obviously be easier just to drink.

At the moment, the feed is attached for 22 hours a day - still at 80ml an hour. As of today it went up to 90ml and tomorrow it goes up to 100m. That means that the feed will only need to be attached for 15 hours a day. Ideally (well for me anyway) would be nice to get down to 12 hours, but not sure Michael has even thought about that.

At home, Michael will have to keep a food diary as well as an in/out fluid chart. The fluid chart is something that will have to be monitored for about 1 year - this indicates any changes that may need attention. The food diary is to monitor the calorie intake - once they can see Michael is eating more, the feed can be reduced and eventually removed. It will definitely be easier getting him to eat more variety when at home. It's ridiculous that the hospital food is so inedible and that there's no facilities to heat your own food up. There's very little nutritious food you can take to the hospital that's cold - apart from a sandwich. Today he did manage two latkes (just about hot using my hot water and plastic bag method) and one cold fishball. Not ideal but at least it was something other than chocolate or sweets. The one great thing about UCH was that there was a microwave. Guess you can't have everything.

We ventured further afield today (about 1 mile more) to a another little parade of shops. Did the usual walk up and down - nothing much to see and then it started to rain. Took refuge in another coffee shop and just chilled. Sure they didn't mind 'a patient' eating a fishball in their shop - he did have one of their fruit juices to go with it. Oh - and that's another thing - no grapefruits or grapefruit juice. Apparently it doesn't mix well with the tacrolimus. Other citrus fruits are all fine - just the grapefruit. If that's the only thing he has to avoid - we'll cope!

Left Michael slightly earlier today as I knew the traffic would be bad because of the weather. I was right - longest journey ever :(

No hospital for me tomorrow - strike means kids are home from school. If all goes well, I'll never have to visit him in Oxford again on a Wednesday.

xx