101 days project nearly at a close

Just a short post.

Today, Saturday 16^th August, is day 86 following Rhys’ transplant. In two weeks time we will have reached day 100 following the transplant, by then we should have been discharged from hospital and be at Sam’s House full time.

The latest batch of pictures will have been uploaded by the end of today so that we can include one of yesterday’s jaunt into the outside world.

We are beginning preparations for eventually getting out of hospital.

Over the last week we’ve been setting up Rhys’ feed pump and connecting him to it as when he eventually gets home he will still have to have feeds for a while. They’ve even provided him with a back pack so he can carry it around with him when he is out and about.

Yesterday we received the first delivery from Homeward the company that supplies everything. Despite the fact that they normally only deliver to your home they were persuaded to deliver it to work. I now understand why they deliver to the house. By the time the car was filled with the 21 boxes that made up the delivery there wasn’t much room to fit anything else in. Our kitchen looks like we could start up a mini hospital.

Doctor Rhys, as we call him in hospital, has had to put up with mum and dad doing his observations when the nurses are a bit busy to help them out. So if you need the your blood pressure, SATS or temperature taken you know where to come.

On Tuesday we had a meeting with the hospital staff as things were getting a bit confusing as to what the plan was with regards to Rhys’ treatment. The feeling that we were getting was that they were trying to push Rhys out to Sam’s House but we didn’t think he was ready for that. Following the meeting we felt a lot more positive about things.

Rhys’ adenovirus is at a much lower level than it was, latest count puts it just over 2000. His liver function count is also lower. The doctors have reduced the amount of steroids he is on and have also taken him off one other drug. This means that his liver should start to recover from the battering it has taken, which in turn means that the magnesium and phosphate transfusions that he has been having on a regular basis should start to reduce. It will take time for this to happen but eventually he should be able to get away with tablets and not transfusions, the phosphate one takes 6 hours over night at the moment.

Yesterday Rhys spent from lunchtime until 9pm out of hospital and managed the furthest distance yet from the hospital in the last 3 months. He was able to go all the way to Auntie Jackie and Uncle Dave’s. He had the run of the place without having to worry about passing the adenovirus onto anyone who might suffer badly from it, like the other patients staying at Sam’s House.

On the way to Jackie and Dave’s we stopped off at Gran and Grandad’s for a couple of hours. The majority of the time there was spent watching CBBC, something that isn’t available at the hospital. The time at Jackie and Dave’s was spent on the laptop and sleeping, same thing as he would have done at the hospital and Sam’s but at least the scenery is better at Jackie’s.

Even the weather played fair for once and it remained dry, if a little windy, until Rhys was safely back in the hospital at which point the heavens opened and the rain descended.

Even though bacon sarnies are still of the menu at the moment Rhys managed half a chicken breast and a roast potato for dinner. Yaaaaaaaaay Rhys!

Today, Sunday, we’re hoping to get out again at lunchtime. The morning has seen a blood transfusion which started between 6 and 7am, a time when most people (including us) are asleep, and the intravenous magnesium. A feed through the nasogastric feed is due at 11am for an hour then freedom for the rest of the day until late this evening.