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

I am still here

Well it's been sometime since I last blogged, but lying in bed this morning at 4am - unable to sleep,having woken myself up thinking it was Monday morning and that I had forgotten to take Lauren to a Bat Mitzvah party the night before - I was dwelling on my life and thought I should blog, a) cause otherwise you'll think I've left the planet and b) thought it would be a bit of therapy for me!!

If you're reading Michael's blog, you'll see that our life revolves around the feed and his output - joyous!! I have to be totally honest and say I'm not reading his blogs much now as living with it is one thing; having to constantly read about it is too much. There may have been a lovely valentines card for me this week, together with some yummy chocs (which I eventually asked Nathan to hide from me as I didn't have the willpower to not eat them all in one day!) but romance really is dead at the moment. Michael generally looks really well (someone did comment that he'd lost weight but when we're were last at Oxford, he gained, so I think that's actually his face just going back to normal after the steriods) although the more I think about it, he could actually pass as a Dr Who character, with so many tubes/attachments.

I won't say it's easy with Michael at home the whole time. It's lovely while I type this that the corner chair is empty and his computer is firmly shut. We do take the dog for walks but other than that, he generally sits in front of the computer and tv screen, with phone in hand. I did suggest that perhaps he should take up cooking (again) but that was a firm 'no' - think that's all related to 'food issues' which I'll discuss later. He's trying very hard to see what his future can/will be business wise when he's fit and healthy and it's great that he's focused enough to do this. I guess though it's the feeling that we're together so often but it's not really quality time and not like when you're working and 'time off' is fun. It's just ...... being at home together. Those days of saying goodbye in the morning and then catching up in the evening are a distant memory (not sure I can even remember it!) and I look forward to those times again, when we can have an occasional day off together which is exciting. I know, when life returns to 'normal' I'll be moaning that we never spend any time together.

My new hobby is baking - no bought bread in our house anymore. Have even ventured into croissants which were a great success. I've always loved baking - just the not eating it that's the problem. We do have a joint task this week though of hanging wallpaper in the lounge. Had a slight water issue a few months ago and now the wall has dried out, it's time to decorate. I prepared it all before the half term and now I'm just hoping once the paper is hung that the leftover paint we have in the garage will match up. There's no way I'm painting the whole room, so if not, nobody look in the corner of the room :(

My frustration (well one of them) at the moment is Michael and food. I'm trying hard not to pressurise him in anyway but I'm sure if you ask him he'll say everyone is pressurising him. He's back to his old habits of eating when he fancies - which is never. Generally he'll always have breakfast but after that he'll only ever help himself to chocolate, chocolate and crisps. At dinner time he'll usually have a taster of what we're eating, again under sufferance, and lunchtime he'll eat if I mention food. The idea is that he eats little and often, when he fancies. His idea is that he eats nothing and never, when he fancies. I think for the last month or so everyone seems to be so focused on his 'liquid feed' that he hasn't had to think about solid food. Michael has always said if he could have a Mars and a tablet a day to keep him going, he'd be more than happy. Now...... he can have his liquid feed instead ..... arghhhhhhh.

Thankfully Michael is now driving so at least now we can split the chauffeuring duties. Only problems is, I constantly worry when he's in the car on his own. Ridiculous I know - he's a grown man, but I'm so used to doing all the driving and knowing where I am and how long I'll be (if you know what I mean), that when he's out and about I'm constantly clock watching. Today he picked up Nathan from the stables (going to have to train him to start doing the early shift and taking him). 10 minutes later, the phone rings. There was me thinking 'god forbid accident, car problems, got lost.....' and meanwhile it was Nathan asking if I could run a bath in for him. I'm just going to have to re-train myself to acknowledge that Michael is convalescing, not incapable (guess that's a matter of opinion!).

We're back to Oxford on Wednesday, where I'm hoping this week's list will be answered and I'll understand a bit more of the recovery process. In the same way, when Michael was in hospital and the Doctors used to come in and I'd happily accept and acknowledge everything they said, then the moment they walked out, I had a list of questions, it's now got to the point where I'm not quite sure the direction we're going in recovery wise. How long will he be on this feed; how do we get him to eat food without any pressure
and without realising he's doing it, what to do about the anti-sickness patches which aren't working (as they are keen to get rid of his PICC line which is where he presently injects his anti-sickness)????? We'll see what the day brings.

Well, it's been lovely sharing my thoughts with you all. Do feel a bit 'lighter' now.

Till next time.

xx

Got home eventually!!!

Shortly after my last blog, Michael reappeared and as expected they had to take bloods from his PICC line. We then saw the transplant nurse - quick discussion on how Michael felt he was progressing and then school uniforms and teenagers!!!

Michael then had a quick meeting the the pharmacist to discuss change in drugs and back to the Ward to see the Surgeon and Nutritionist (and to collect Michael's phone charger which he left on his last admission). Scope was undertaken but as the Surgeon was so pleased with how everything seemed to look, he didn't do a biopsy. We had long discussions with the Nutritionist and it was agreed that Michael would change feed (a lower sugar level feed as sugar does not help when there is bacteria in the gut), another course of antibiotics as still bacteria in the gut and eat anything Michael fancies.

We didn't bring up the subject of Michael's PICC line as we knew the Surgeon had plans to remove it. We thought we'd got away with it, but just as we were finishing, the Surgeon remembered. Poor Michael! Anyway, it was agreed that Michael's going to try the patches and oral anti-sickness drugs; see how he responds and if all ok, the PICC line will be removed. The Surgeon said that 'psychologically' that would be big progression for Michael - funny but we both don't see it that way. If it was Michael's stomach tube that was coming out, then that really would be progression. I look forward to the time I can tell you that he'll be tube free!

Then on to the Pharmacy to collect all the drugs, which obviously weren't ready so a pit-stop at the cafe (that's cafe not café) for a drink. Naturally the half hour wait they told us was in fact 1 hour, by which time it was just past 2pm.

We were very lucky with the traffic again and it was only 1 hour home. I have to admit I am getting rather bored with listening to Radio 2, as that's the only station I manage to get on the drive out of Oxford. When Michael first went into hospital, it was quite nostaglic listening to Steve Wright - happy memories of my teenage years. But now - finding it a little boring so any suggestions of other radio stations would be appreciated. I guess Michael and I could also pass the time talking but on the other hand, we'd already spent time in the car on the way there :)

So another fortnightly Oxford visit over. Feel happier today that things are progressing. Happy with everything we discussed today. It's exactly four months to the day since the op, and I think Michael's doing really well. Yes, life is far from normal but as we keep discussing, we haven't had normal for many years. We're coping and I guess that's good in itself.

Tomorrow, I will be back to my usual unexciting, unbloggable life but I'll report back at some stage.

xx

I haven't blogged for some time as I felt no one was interested in my daily life of dog walking, cleaning, baking keeping Michael company and giving just the right level of sympathy and generally just keeping myself busy whilst we wait for some major breakthrough in Michael's recovery.

Now, sitting here in the waiting room at Oxford, I've realised I'd much rather be doing any of the above. We arrived just before 10am. It's now after 11am, and I'm struggling to stay awake. Michael was called about 15 mins ago for his bloods. I'm guessing that as he hasn't returned, they're having the usual difficulties and he'll either come out black and blue, or they'll give up and take the blood through of his PICC line.

Think this is the busiest clinic has been since we started coming. Think it's going to be a long day .......

Justine

read my blog:www.the-transplant-wife.blogspot.com

Whoops!

For those who have read last night's blog, hope the error made you giggle. Michael obviously went back to hospital. For those who have not read it, error already changed so no giggling for you!!

Justine

read my blog:www.the-transplant-wife.blogspot.com

I wasn't in Oxford today, although I have heard that Michael didn't spend the day in his pyjamas!!

He's had his scope and a biopsy taken of the ulcer; his on fluids as he's quite dry; day 2 of new drugs; and hopefully home soon. They are pretty certain that the problem is the bacteria overload so hopefully once this is sorted he'll be back on track. He should be home in the next couple of days and then I guess we'll go back when he's finished his course of meds.

It's terrible how easily the kids and I have slotted back into 'dad's not here' mode. They took it so well when I told them on Tuesday that Michael had gone back into hospital. I'm sure it's because they could see that Daddy wasn't unwell but knew he was just having problems. I felt quite ridiculous notifying the school yesterday (always like to keep them up to date just in case the kids do have a problem at school) that Michael had gone back into hospital but stating that the kids didn't have a problem with this. I know I've mentioned it before but how sad is it that our kids have adapted so well to all these hospital stays and ill health?

The corner sofa does look quite empty without Michael and his computer sitting there, but hopefully he'll be cluttering up the space very soon.

xx

12.50 pm

So here we are again in Oxford - Michael in his pjs sitting on his bed, watching Loose Women together. Did just query with Michael why he doesn't get dressed and sit on the chair. Answer? Can't be bothered and chair too uncomfortable.

We're back to the usual routine - walk to shop for paper, watch morning tv, read paper and tweeting (Michael not me). Seems daft that he's back in when he seems so much better but obviously get that they've got to sort this feed problem out.

The Surgeon has just seen us. The plan is - scope and biopsy tomorrow, as well as biopsy of the ulcer he still has. Not doing today as Michael has only just come off Deltaparin (blood thinning) and therefore not good to take biopsy of ulcer which already bleeds. Just about to connect back to the 'new' feed - yes, same problems will occur but obviously still got to get nutrition. Input/ouput will be closely monitored.

Michael started a new drug last night - ciprofloxin. They believe the problem is connected to too much bacteria in the gut. This is caused by the feed sitting in the gut before being absorbed and 'fermenting' which causes bacteria overload. It will take about 10 days to see whether this works, at which stage a further drug is needed to put 'good' bacteria back into the gut. I'm just hoping he won't have to stay in for that whole period.

Will keep you posted.

xx

Justine

read my blog:www.the-transplant-wife.blogspot.com