28 April 2012

Been a long time......


 It’s been a while since I last blogged.  To be honest, I really haven’t known what to write – although life has been far from normal, we’ve at least got back to some sort of routine and Michael’s been home.   Well he’s been home more often than not – the occasional hospital stay and the bi-weekly trips to  Oxford for routine tests.

And then, two weeks ago, having gone to Oxford for what we thought was routine tests, Michael was admitted for ‘routine’ fluids (he’s quite often dehydrated because of complications relating to the Colon not working.   This is because of his stoma and there is now talk of him having a reversal earlier to solve this problem.  That’s another story which I’ll go into later.).    He went in on the Thursday (half term – fabulous!!!) and all plans were for him to leave on Monday after he had his balloon inserted into this stomach.   Now this is the problem with not having written for so long – so much information......   Basically it’s been discovered that the sickness Michael has been suffering from, although originally  put down to bacterial problems in the gut, has in fact been because the stomach muscle which pushes all the food down, is very tight and therefore not doing it’s proper job.  When we discovered this it was a bit of a ‘told you so’ moment – having been querying whether the sickness could have been related to the stomach (you may recall that he had stomach problems prior to his op which they said would be solved once he had a new bowel).  Anyway, the balloon is meant to stretch the muscle so it can work properly.

So balloon all scheduled, and he would be able to come home Monday afternoon.    But (and there always seems to be a but nowadays) on the Saturday , 10 minutes after we had left from our ritual visit, he came down with terrible shakes, temperature, etc – yet another bug. So..... regime of antibiotics  while Michael had to deal with the hot and cold temperatures.   Think we’ve been here before.  He was strong enough to have the balloon inserted on Monday.   I wasn’t there – it was the kids last day of half term and, not for the first time, I was pulled in many directions, and the kids won! 

Like most of my life at the moment, the rest of the week was a bit of a haze – continuing antibiotics and various tests and waiting to see if the balloon would work.  To date, nothing and he’s now scheduled for botox this coming Monday.   ????? I can hear you all say but you’ll have to wait for more information on that one.

Meanwhile, we were quite excited to receive a letter with the date of Michael’s stoma reversal.  Very big news for Michael – we always knew reversal would happen and more than likely around a year after the transplant.   Because of the dehydration problems, the surgeon decided that it should be earlier and being given a date was (notice the was???) fantastic news for Michael.   A real bonus.   On Wednesday he had a test which is check that all is ok with the bowel so that reversal can go ahead.  Yippee – all fine.   The date coincides with Aaron’s GSCEs, which obviously concerned us, but we decided that as long as we were completely open with our discussions about it, with Aaron, then there shouldn’t be a problem.   Something else for our poor children to deal with.

By the afternoon – it felt like our hopes had been dashed.   We were somewhat surprised (as well as hugely disappointed) to be told that in fact reversal could not happen until Michael was at a good nutritional level.  Apparently reversal can disturb the nutritional balance of the body and therefore it needs to be at a good starting point.   Well this was complete news to us –  something we’d never heard before.  Actually I’m not sure we’d ever heard about any nutritional balance.    I think both of us have been fairly accepting of the all the information we’ve been given – we totally  understand  and always knew that with Michael being only patient no. 11 that he was a bit of a ‘guinea pig’ and I guess it’s not bad that it’s taken  just over 6 months for us to get to the stage of being so frustrated.   Not even frustrated because the reversal may be delayed but annoyance that we’d thought it was pretty much fixed that it would all go ahead.  Nutrition was somehow just thrown at us.   If only it was as simple as throwing it back L 

So now Michael’s feed (and that’s another thing – never really realised how long he’d be on this bloody feed for) has to slowly be increased so his body has the necessary nutrients; he’s now on something or other for his pancreas which I believe is something to do with digest enzymes;  he’s not allowed to eat very much because the balloon doesn’t seem to be working (will explain more in a a bit) and generally I’m not really sure where we have progressed to.   Oh yes – his bowel is perfect it’s just a shame it can’t be worked properly because of all these complications.

The botox is not a present from my husband because of all the extra frown lines I now seem to have.   Apparently it’s something that will now be injected into the stomach muscle to relax it.  Up until today it couldn’t be done for a few more weeks because the stomach had to get over the balloon.   But today, when I thought perhaps I would be collecting Michael from hospital, he gets to ld that the procedure may actually get done on Monday and therefore he’ll b staying in.   Well that just made my day.   There was me thinking how lovely – all the kids are out this evening and Michael and I could have a lovely quiet evening together.   But oh no – here’s me, sitting on my own, watching some naff film.  Had a good look at all the bottles of wines I thought could share the evening with me and then decided it was pointless as I don’t really like wine and what was the point of opening a bottle of wine so I could just use it in the cooking!

So why am I blogging today when I haven’t for so long?  I think mainly so I can remember a little more of our journey.  You can most probably tell that I’m not in the most positive of moods today.  I generally just get on with it and as I said, we’re in a sort of routine.   But honestly, I’m fed up waiting for things to be normal; for Michael to eat and have a normal life; for us to be able to go out together; for him not to constantly feel sick; for me always have to put a brave face on things; for us always trying to be positive in front of the kids; for me feeling like a single parent.   I’m just fed up of it all.

I think maybe now it’s time to sign off.  Another early start tomorrow – our lucky middle child at DofE tomorrow.   How wet is he going to get!!!???!!!

Perhaps now I’ve blogged again, I’ll do it more often.  Putting moans down on paper is very therapeutic – shame it doesn’t change anything xx

1 comment:

  1. I disagree with blogging not changing anything! Your thoughts and feelings are invaluable to the families of crohns sufferers because they often feel the same way. There is a real difficulty in standing by watching the man you love going through procedure after procedure and you put that into words beautifully, also that difficult pull between children's needs and your husbands is very hard to face on a daily basis and you do that strongly and are an inspiration to others.
    I hope you don't think I am being rude, just a gentle telling off to say you make a difference, thank you so much x

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