Saturday Evening

I'm back!!! Longest time I've gone for a long while without blogging - was getting a bit shaky....

Yesterday I had a day to myself. Just needed some time to get myself together - do the unimportant things in life like a bit of cleaning, bill paying, etc. Managed to squeeze in a quick coffee with some friends which was very refreshing - felt a bit normal for a change.

Michael's day yesterday seemed to be the usual - Thursday night/Friday morning hot/cold sweats and temperature and a bit of sickness. The nurses are wonderful - when I phone up they always have time to explain what's going on, even going into Michael's room and asking if he has any messages for me. Quite bizarre sending our love to each other via the nurses but in the same way you lose any dignity in hospital, you also don't really care what message you pass on via the nurses. I know I've said it before but I just cannot praise the staff enough. I can only compare to what we've seen at other hospitals that Michael's been in recently but whatever is needed, by whomever, is always done so swiftly. He has got the most amazing care at the Churchill.

I have to say I did feel fairly refreshed yesterday - so nice not to have to spend so much time in the car. We spent the evening at my parents - and I must just say a well done to my Dad (and of course Mum who's done all the hard work!) whom himself has had a really tough year health wise. He really has pulled through and last night, even the kids commented that Grandpa was back to his old self. He looked brilliant - long may that continue. Meanwhile, we got home and the good old electrics kept fusing again. In the end, I stood by the fuse box (standing on the downstairs toilet so I could reach it) for a good 10 minutes as I'd already run up and down the stairs 4 times having switched it back on and then everything fusing again. As usual, eventually stayed on and so far no problems. As an electrician already explained when he came round when we originally had the problem - very hard to locate when you can't figure out what's causing the problem!!

It's funny when you're trying to remember your day, so you can write it down, how unimportant things which you wouldn't normally talk about and tell anyone becoming 'news'. This morning for instance I was reading in bed when this slight banging noise came from what I thought was Aaron's bedroom (next to our room). I couldn't imagine what he could possibly be up to. Then I thought it was more Lauren's room, so I went into the hallway to see if I could hear more clearly - definitely not from her room. Then I realised it sounded as though it was coming from above - yuck, rats I thought. But then would rats make such a noise - surely that would be a scratching noise? Birds maybe? In the end I thumped back on the ceiling but the banging just continued. Couldn't stand the noise anymore so went downstairs to look from the garden at back of the house to see if I could spot anything. Me in my pjs, glamorous pair of crocs on my feet in the drizzle - stunning view and I'm sure I must have scared off anything that was there anyway!!! Could it perhaps have been a woodpecker on the sofitts? Weird but outside Aaron's window, the black painted sofitts have all been chipped away or maybe it's just the paint peeling. We'll see if the sound's back tomorrow.

Kids were very excited to be seeing Dad today. Lauren made a beautiful poster saying how brave her Daddy was (that's now taken pride of place on his noticeboard). Quick enough journey and as always for a weekend the car parks were fairly empty at the hospital. I get free parking which is brilliant, although I must say the car parking fees are much less than in our local hospitals. Michael looked ok when we arrived - obviously happy to see the children but again, very hard for him and had to put a lot of energy into their visit. They're older and it's not like they need attention from him, or either of us to keep them occupied but it really is like visiting a patient in hospital who happens to be their Daddy as opposed to visiting Daddy in hospital (not sure that makes sense but I know what I mean!!!). I guess visiting him in hospital is nothing new for our children but visiting Daddy when he's obviously unwell is all new. Maybe they don't even notice - kids are so resiliant.

Shortly after we arrived, Michael felt extremely nauseas, grabbed one of his bowls (just proof reading before I post and realised I'd typed bowel instead of bowls - thought that was quite funny. Could imagine your faces when you read that he'd grabbed one of his bowels) - at which point Lauren and Aaron decided it was time to leave the room. It's not nice to see anyone be sick but do children really want to see their Dad go through this. Well - Nathan had no problems! He didn't actually bring up much - and the Nurse aspirated and it was actually air that came out.

Lauren was highly embarrassed when the Surgeon came in. She was just coming out of the bathroom and happened to open the door as the Surgeon came into the room, and more or less hit the door into him. Nobody hurt - but she couldn't bring herself to then come out of the bathroom and hid in shame. Surgeon was happy with stoma output and how Michael's tummy felt. Michael said he felt a bit bloated and the Surgeon told him that was quite normal from the feed - because as that was going into the intestine, the bacteria (the 'good' bacteria) is working away, which in turn produces gases which obviously causes slight bloatedness. With regard to the infection, some new additional antibiotics were given yesterday for a boost and nothing has grown from the blood cultures so they are still unsure why Michael is getting the temperature spikes. Some further results will be coming back on Tuesday which will confirm (or not) whether it is a virus. If it is, the antibiotics that he is already on are the correct ones but will just be higher doses. If not, could a variety of things. One option is that although the organ is not rejecting, the organ could be 'fighting' against Michael's body or, Michael's body could be fighting against the new organ. The surgeon seemed to thing this was unlikely as there would be other effects - skin rash; colon (more output) and liver (can't remember what effect). Michael is having his weekly scope tomorrow and that should also show if there's any 'fighting' going on. Could also be bacteria - if this is the case they would have to reduce his immunosuppressants (anti rejections drugs) so that his body could fight it off. They have also started to check Michael's stoma output four hourly as well as draining his stomach tube four hourly - all to make sure his outputs of fluids is normal (this fluid output is something that also gauges whether all is ok).

Again he reiterated that all is going well but I know Michael is finding this hard to believe. How could anyone possibly convince someone who is constantly feeling so drained, that this is 'good'. I'll keep my positive face on though - someone has to!

We entertained ourselves with good old fashioned games today - eye spy (until Michael got bored) and the one where you go shopping and have to keep naming all the items everyone buys. Bit of a reversal of roles - when the kids were younger thought it was a good memory game to play. Now, believed it was a good game for Michael's memory. No walking today - he just wasn't in the mood. I'd brought his coat and hat up in the hope that we could have taken him for a wheelchair ride and get some fresh air, but it wasn't to be. I wouldn't force him at this stage - if he was someone that gave up easily, of course I would push him but I know he's a fighter and if he doesn't want to, he really doesn't feel up to it.

Didn't realise he'd been watching every day the DVDs of the kids I'd taken up. He wanted to watch them with the kids - we all had a good laugh, while Michael sat there and cried. Can anyone run out of tears? Have insisted he watch something else and if I find he keeps watching them, I'll have to take them back home.

We stayed for about 3 and a half hours, by which time he was wilting so we left him to have a rest and trekked back home.

For a change, we actually went out this evening. Really thought it would do us good to be with friends rather than have the usual vegging in front of the tv. Firework display followed by supper. To be honest, didn't really matter what we did, it was lovely to be with friends. Obviously with good friends, it really doesn't matter that I'm on my own but it does feel like a long long time since I had Michael with me, without him either feeling very tired, very sick, generally lousy or dragging that tpn rucksack around with him. I do so look forward to having a normal life one day.

And now, having caught up on my blog, I realise I have to be up in 6 and a half hours - how positively depressing. Nathan also went to bed late and was moaning about having to get up for horseriding. I did tell him that he'd be absolutely fine when he woke up - now I've just got to convince myself.

Night xx