Friday morning

Just arrived and Michael's in negotiations with the nurse as to which drugs he can avoid taking. Basically all meds are now being put through his jejunum tube, which is making him extremely bloated. Now making his own choice on which meds he needs!! With all the water flushes (water has to be put through after each med to make sure it goes completely through tube) that he has to have as well, it comes to 70ml. It may not sound much but his feed is now only on 60ml per hour. Anyway, gave some and waiting for Doctors to decide if other meds need to be taken. One of them is meant to help with stomach acids and to stop the nausea - but doesn't seem to help. Meanwhile, the drug he was meant to be taking for the ulcers was also being given through the tube. I asked the nurse on Wednesday how that medicine could possibly work - how could it get into the stomach and coat the ulcers if it was going directly into the intestine. She had no idea but understood my confusion - she checked with pharmacy. It transpires that it couldn't get to the ulcers and so he's now off that drug altogether.

We've managed a walk this morning. Hard work for Michael and I feel cruel pushing him to do it. No smiles today :(

Infectious Disease team have just been in. They're satisfied that Michael has nothing infectious - all tests have been done. They would have thought rejection would be the problem but are aware this has also been ruled out. Michael did ask if he could be taken of the antibiotic that he's on (and has been since surgery) as he thinks it adds to the sickness. They have said no as it is the best one for transplant patients to help fight off infections.

Surgical Team just made their visit. Had a whole discussion on the neurological pathways and the messages the brain sends the stomach and gut. I'd asked various questions about the stomach working and the intestine filling up and feeling bloated. All very interesting but now I think about it, not sure my question has been answered!!! Only concern was he didn't instil confidence in either of us that Michael's stomach will definitely start working again. Both Michael and I picked up on this although didn't actually question him. Think that's a question for the Surgeon as he and the nutritionist have always been confident it will work when ready. Anyway, more of the same - keep going with feed; can take very little sips of fluid; temp spikes aren't as high so hopefully whatever he has is leaving his system; drug Michael didn't want is now going to be given by a melting tablet under the tongue. They realise how frustrating this all is and as a Team they too are frustrated but hopeful things will start moving along. As yet, the flu results have not come through and they reckon by the time they do, Michael will be over it all.

Time for a hairwash - although he's just dozed off!

Justine

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