Week 3 
Pictures: Dad, James and Vicky (Play Specialist) playing with "UpDonalds" toy food
Tuesday 25th January, into the 3rd week post transplant and there is no stopping James' progress at present. Today James was allocated his own cubilcle so he moved off the High Dependancy Unit ("HDU"), he was also to have one of his nasal tubes removed and his temporary central line was taken out in the evening.
During the day James had his first trip off the ward to the gym with phsyio Jemma and Vicky (above) and went on the trampoline although it was a bit to firm to bounce on and played skittles.
The nurses were having to make frequent trips to "The Ham Man" for more sandwiches, with Spagetti Hoops for lunch as well on Wednesday.
During the ward round the doctors mentioned the "H" word (not Ham but Home) and said they were starting to plan for James' discharge. This would mean James could be at home in protective isolation rather the on the ward still having to keep clear of any infections that could compromise his condition
Wednesday also was the first day that James did not have to have any TPN feed but just had a small amount of fluid overnight.
Beans and Sausages for breakfast on Thursday, but still having his "dose" of ham sandwiches. The doctor undertook another biopsy which James watched for the first time, the results were consistent with all previous samples which have shown slight changes but no rejection yet.
Mum, having recovered from a bout of cold etc, came to see James for the first time since ITU, the nurse having to chase after him with his pump as he ran up the corridor to see her to give a big hug. Dad looked after Lauren and James played with Vicky whilst Mum had her first training on medicine and milk feed preparation.
During the day James' temperature lept over 38 C a possible sin of infection or rejection but came down to 37.3 by 6pm
James' ongoing medicines once at home consist of over 10 different drugs, some of which are administered 4 time per day, and only one of which he currently likes, some will cease after six months post op but the immunisation surpression will continue for the rest of his life.
Thursday night only one pump left......
And Chicken Nuggets for tea
Friday saw Dad go back up to Cheshire with Lauren and Mum taking over on the ward. On leaving Dad told James that he would be back either Monday or Tuesday to which he replied "Tueday" so he was obviously looking forward to some time with Mum..........
Saturday 29th - SMS update from Mum - five packets of Ham Sandwiches so far today............and I don't think he is sharing
Mum couldn't believe the difference in James since she had last seen him. When she left he was a nervous wreck, not allowing anyone to come too close, not speaking and hardly able to move his limbs. On her return she found him on his feet, playing peek - a -boo with the nurses behind his cubicle curtains and generally in high spirits. He still, understandably, did not like any nurse intervention so mum quickly had to train up on all of his care.
Firstly a trip to the feed room to make up his special feed for his nasal tube. If we thought we had very little time in our evenings to cook, eat or relax before, we are in for an even bigger shock. In addition to making up Lauren's bottles our evenings will be spent mixing 24 hours worth of feed for James which consists of various powders and chemicals and filling lots of bottles with boiled water since James will never again be able to drink tap or mineral water.
Although James is now able to eat orally it will be some time until his bowel will properly absorb all the nutrients. He will come home on naso-gastric feeds. Initially this will be over 24 hours which will not be much fun for James since the tube connecting him and his pump is less than a metre in length. Eventually this will be cut down to overnight feeding with bolus feeds 2 - 3 times a day.
Next to learn were the medicines. James has 13 different medicines, many of which he will now have to take for life 4 times a day. Mum learnt how to draw / make up each of the medicines and was constantly being tested by the nurses on the purpose of each medicine, the side effects and signs to watch out for with each one. The hardest part was learning all the names since each one has its official and its marketing name and we have to know both. It felt like being at school again, but by Monday night mum had been signed off on all of James' care.
8am batch of medicines
An alarm will be needed to remind us of medicine time each day since a lot of the medicines are very time sensitive. By Monday James was taking 3 of the 13 medicines orally, sometimes needing a good 30 minutes of encouragement, so this is going to be a stressful and time consuming part of each day. At the moment the other 10 are being pushed down his tube, though at some point this will be removed and James will have to take them orally. Why can't they make all medicines taste like good old calpol (though the cheap hospital version of this leaves much to be desired!).
Mum and James had a lot of fun over the weekend playing, reading stories and watching videos. Eating also being a favourite pastime - steak pie going down particuarly well!
James was officially named the star transplant patient. Mum was constantly being told of how fantastic his progress has been and a discharge meeting has been scheduled for Wednesday 2nd Feb. This is unheard of. We had been told to expect a minimum stay of 3 - 6 months which is normal for this type of transplant so to be planning the discharge just 3 weeks down the line is a miracle.
Mum, however being a bit superstitious was a little concerned about every one tempting fate so early on, especially given that we have been constantly told to expect a rollar coaster ride.
These sentiments turned out to be well founded. On Monday both James' stoma output and his reducing substances test which indicates how well the bowel is actually absorbing the sugars suddenly shot up, being indicative of potential rejection. Mum having been signed off for all her training had to hand over to dad on Monday night so he could commence his.
Week 4 Update
