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
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.
ReplyDeleteI 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