Justine
read my blog:www.the-transplant-wife.blogspot.com
27 January 2012
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!!
26 January 2012
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
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
25 January 2012
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
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
24 January 2012
Tuesday 23 January 2012
There was me moaning yesterday that I didn't think the feed was the problem, and today the hospital called to say the Surgeon wants Michael back in to investigate further. I wanted to go with but the hospital didn't really want to wait until tomorrow as a bed was available (I did request a sea view for Michael!). Bad enough that Michael was going back into hospital, without the kids having a clue, so I didn't want to not be around when the they got home. Thankfully his Dad was around to take him in. I'm now waiting to hear that he's arrived, although I can't imagine that they'll be much 'investigations' today.
Obviously we were both disappointed that Michael's had to go back into hospital but hopefully it won't be for too long and, more importantly, they'll sort out these problems he's been experiencing.
I'll keep you posted.
xx
Obviously we were both disappointed that Michael's had to go back into hospital but hopefully it won't be for too long and, more importantly, they'll sort out these problems he's been experiencing.
I'll keep you posted.
xx
23 January 2012
Monday 22 January 2011
Cannot believe another week has flown by. There I was worried about when I'd get my next lie in, and I've already managed to squeeze 1 in!!
Last week was, as expected, exhausting. Les Mis was a fabulous show and I was very proud of Lauren being part of such an amazing production. The biggest shame was that Michael couldn't watch. I know Les Mis is not his idea of fun but to miss his baby on stage is so unfair. Meanwhile, there I was worried about how I was going to get her out of bed each morning and actually she wasn't too bad - I didn't cope as well. As there was absolutely no chance of me getting out of bed any later than 7am each morning, I did, for the first time, take Nathan to the stables in my pjs and dressing gown yesterday and then climbed back into bed until 10.30 am. Absolute bliss.
We had the busiest, but loveliest weekend and, as always, Michael was not able to join us. It was our dear friends' son's Bar Mitzvah and it was wonderful that we were all (of course, not Michael) part of both the Saturday and Sunday celebrations. On Saturday morning, I left Michael in bed, not yet ready to get up. I popped back at lunchtime, just to check all was ok and he was comfortable in his usual corner seat of the sofa, with phone, computer and dog for company! When I returned again in the afternoon - feeling guilty that he'd spend so much time alone, he was in his usual corner seat of the sofa, with phone, computer and dog for company!. Not sure whether he'd moved at all or not. Of course, everyone asked how Michael was and whether they'd be seeing him over the weekend and I repeated the same old story ...... 'no - too much risk of catching germs when so many people' and, in answer to 'how is Michael', the usual response of 'looking much better, getting stronger but insides doing very slowly'. Don't get me wrong, it's wonderful that so many people want to know how things are and care for us both, but my answers always feel so inadequate. The reality is, there's not going to be any major leap forward in how Michael's feeling from one day to the next. One friend said but 'you know he's improving, he looks so much better - think where you were a couple of months ago' but, in truth, Michael's internal problems, for him, don't feel much different at all. I'm sure if I could put our lives pre-transplant and post-transplant side by side I'd say what an amazing improvement there is but, to be honest, I can't.
Michael is really struggling with this whole feed thing. I'm sure if you were brave enough to read his blog on Saturday, you'll know the problems he's encountered (and if you have ready it, I apologise!!!!). This is exhausting for him and frustrating for me. As I said last week, we had all our questions answered when we were in Oxford on Wednesday but by the time we got home, we felt that we hadn't really progressed anywhere. I still really don't understand why Michael bloats up so much when he's on his feed. In my opinion it's like it doesn't get absorbed in the system, and collects like a filled up balloon. When he's going to pop, I'm not quite sure.
He's had two days off the feed, as advised, and today he went onto the new feed which they gave us. The positive was that he didn't have the usual outpouring that he normally gets when on the feed. I did initially think - yippee, maybe I shouldn't have been so pessimistic and maybe this new feed will be the change he needs. It's now 7 hours later, and the output has began to increase and he's feeling extremely bloated again. So I'm back to my usual frustrated self. I can't help thinking that perhaps something just hasn't kicked in and isn't working properly. Am I wrong to assume that if the bowel and stomach are working properly now, that food/feed goes in, goes through the system doing the necessary work and then comes out??? I understand that certain proteins may be too heavy to digest at this stage, so a soft diet is preferable, but just don't understand why the rest isn't working more 'normally'. Until normal happens, the sickness isn't going to get any better either. And so we go on......
The Nutritionist, who Michael is in constant contact with, has said if this new feed doesn't work, she has other ideas. I can also contact her at any stage, with any queries I have but at the moment I feel that perhaps I'm a little negative about the feed itself being the problem and I will therefore wait and see what other 'goodies' she's going to get Michael to try. I truly hope I'm proved wrong and that eventually, the feed will get sorted and in turn the bloatedness and other problems will be solved.
If only Michael could get more calories in him to get off the feed altogether. That's easier said than done though as with his limited soft diet, there's only so much he can eat. He is doing well though - porridge most mornings and then a selection of either omelettes, choc mouse, strawberry mousse, chopped liver, pates, yoghurts. Any other suggestions welcome please!!
Feel awful - just had a call from my daughter, in a blind panic as she's just jumped off the school bus as she realised she had an afterschool lesson, which I too forgot about. I have noticed that I just don't seem to be able to concentrate properly on anything and my mind jumps from one thing to the next. Normally I'm so good and reminding the kids what they're up to after school, but today I forgot to tell Nathan about his after school rehearsal but did remember in time to text him. Lauren? Completely forgot - perhaps if I'd looked at my phone earlier I would have noticed the reminder that came up and could have texted her so she didn't land up being so upset. Oh well - managed to calm the situation.
My mind has now (again) wandered off so rather than rambling (although I may have already done that!), I will say goodbye.
xx
Last week was, as expected, exhausting. Les Mis was a fabulous show and I was very proud of Lauren being part of such an amazing production. The biggest shame was that Michael couldn't watch. I know Les Mis is not his idea of fun but to miss his baby on stage is so unfair. Meanwhile, there I was worried about how I was going to get her out of bed each morning and actually she wasn't too bad - I didn't cope as well. As there was absolutely no chance of me getting out of bed any later than 7am each morning, I did, for the first time, take Nathan to the stables in my pjs and dressing gown yesterday and then climbed back into bed until 10.30 am. Absolute bliss.
We had the busiest, but loveliest weekend and, as always, Michael was not able to join us. It was our dear friends' son's Bar Mitzvah and it was wonderful that we were all (of course, not Michael) part of both the Saturday and Sunday celebrations. On Saturday morning, I left Michael in bed, not yet ready to get up. I popped back at lunchtime, just to check all was ok and he was comfortable in his usual corner seat of the sofa, with phone, computer and dog for company! When I returned again in the afternoon - feeling guilty that he'd spend so much time alone, he was in his usual corner seat of the sofa, with phone, computer and dog for company!. Not sure whether he'd moved at all or not. Of course, everyone asked how Michael was and whether they'd be seeing him over the weekend and I repeated the same old story ...... 'no - too much risk of catching germs when so many people' and, in answer to 'how is Michael', the usual response of 'looking much better, getting stronger but insides doing very slowly'. Don't get me wrong, it's wonderful that so many people want to know how things are and care for us both, but my answers always feel so inadequate. The reality is, there's not going to be any major leap forward in how Michael's feeling from one day to the next. One friend said but 'you know he's improving, he looks so much better - think where you were a couple of months ago' but, in truth, Michael's internal problems, for him, don't feel much different at all. I'm sure if I could put our lives pre-transplant and post-transplant side by side I'd say what an amazing improvement there is but, to be honest, I can't.
Michael is really struggling with this whole feed thing. I'm sure if you were brave enough to read his blog on Saturday, you'll know the problems he's encountered (and if you have ready it, I apologise!!!!). This is exhausting for him and frustrating for me. As I said last week, we had all our questions answered when we were in Oxford on Wednesday but by the time we got home, we felt that we hadn't really progressed anywhere. I still really don't understand why Michael bloats up so much when he's on his feed. In my opinion it's like it doesn't get absorbed in the system, and collects like a filled up balloon. When he's going to pop, I'm not quite sure.
He's had two days off the feed, as advised, and today he went onto the new feed which they gave us. The positive was that he didn't have the usual outpouring that he normally gets when on the feed. I did initially think - yippee, maybe I shouldn't have been so pessimistic and maybe this new feed will be the change he needs. It's now 7 hours later, and the output has began to increase and he's feeling extremely bloated again. So I'm back to my usual frustrated self. I can't help thinking that perhaps something just hasn't kicked in and isn't working properly. Am I wrong to assume that if the bowel and stomach are working properly now, that food/feed goes in, goes through the system doing the necessary work and then comes out??? I understand that certain proteins may be too heavy to digest at this stage, so a soft diet is preferable, but just don't understand why the rest isn't working more 'normally'. Until normal happens, the sickness isn't going to get any better either. And so we go on......
The Nutritionist, who Michael is in constant contact with, has said if this new feed doesn't work, she has other ideas. I can also contact her at any stage, with any queries I have but at the moment I feel that perhaps I'm a little negative about the feed itself being the problem and I will therefore wait and see what other 'goodies' she's going to get Michael to try. I truly hope I'm proved wrong and that eventually, the feed will get sorted and in turn the bloatedness and other problems will be solved.
If only Michael could get more calories in him to get off the feed altogether. That's easier said than done though as with his limited soft diet, there's only so much he can eat. He is doing well though - porridge most mornings and then a selection of either omelettes, choc mouse, strawberry mousse, chopped liver, pates, yoghurts. Any other suggestions welcome please!!
Feel awful - just had a call from my daughter, in a blind panic as she's just jumped off the school bus as she realised she had an afterschool lesson, which I too forgot about. I have noticed that I just don't seem to be able to concentrate properly on anything and my mind jumps from one thing to the next. Normally I'm so good and reminding the kids what they're up to after school, but today I forgot to tell Nathan about his after school rehearsal but did remember in time to text him. Lauren? Completely forgot - perhaps if I'd looked at my phone earlier I would have noticed the reminder that came up and could have texted her so she didn't land up being so upset. Oh well - managed to calm the situation.
My mind has now (again) wandered off so rather than rambling (although I may have already done that!), I will say goodbye.
xx
19 January 2012
How being at home can drive two people crazy!!
Just some observations today......
Is it me or is it quite obvious that crackers do not generally go in the soft food group? We sat down for a late lunch today - Michael put a piece of bread in the toaster and I told him that toast wasn't really soft food and reminded him that his soft diet is to help with his stoma output. No problem until he then sat down with the box of crackers. I have to admit that I did lose it but in my mind it's so very clear that there's absolutely no difference between crackers and toast.
Now I know Michael's trying to be very helpful around the house - you know, putting things away so you don't know where they are..... Well I was in the midst of cleaning the toilet - had sprayed the cleaner on it and then got side tracked into doing something else. When I did go back to finish the job off, the seat was down (when does a man ever close the lid?!). So - he'd managed to use the loo and not notice that it was covered in cleaner :)
Just the usual daily routine - argghhhhh!!!
Is it me or is it quite obvious that crackers do not generally go in the soft food group? We sat down for a late lunch today - Michael put a piece of bread in the toaster and I told him that toast wasn't really soft food and reminded him that his soft diet is to help with his stoma output. No problem until he then sat down with the box of crackers. I have to admit that I did lose it but in my mind it's so very clear that there's absolutely no difference between crackers and toast.
Now I know Michael's trying to be very helpful around the house - you know, putting things away so you don't know where they are..... Well I was in the midst of cleaning the toilet - had sprayed the cleaner on it and then got side tracked into doing something else. When I did go back to finish the job off, the seat was down (when does a man ever close the lid?!). So - he'd managed to use the loo and not notice that it was covered in cleaner :)
Just the usual daily routine - argghhhhh!!!
18 January 2012
We were back at Oxford for the usual tests today. Horrible driving conditions today but thankfully we made it in good time. Bit of a false start though. I took the kids to school today - just meant Lauren got a bit of a lie in as bed time so far this week has been midnight!! Came home to collect Michael who was panicking as he'd just found a hospital letter stating he had an appointment for tomorrow. I did remember that we had definitely made today's appointment but then had received a letter detailing appointments for last week, tomorrow and one for 2013!! I had left it to Michael to phone and sort and, of course, he hadn't. So, he called the hospital to double check and we then waited for them to call us back to confirm before we set off. Anyway, made it by 10.20 am which was pretty good - especially as I'd woken and heard that there'd been an accident around our stretch of the M25.
Not too much hanging around today, although we were still there till after 1pm. Bloods took forever as usual and then we met with the nurse to go through any problems we were experiencing. Most of our questions related to the feed, so we held off until our next meeting. The Nutritionist believes the problems Michael is experiencing is definitely from the new drug he was put on before he came out of hospital, which he stopped nearly two weeks ago. This takes about 14 days to clear from the body and therefore we will see if everything calms down by the latest, Saturday. My gut feeling (don't normally talk about my gut) is that it wont make any difference, and it's just the actual feed that's causing Michael the problems. But it's all trial and error at the moment, and we'll see what happens. She did give us a new feed to try out (guinea pig style!) if things don't improve and see if that makes a difference. Food was also discussed and she feels at the moment, Michael should try and keep to a soft diet - ie. custards, yoghurts, mushed vegetables (bet you can see his face if I gave him that!), cheese sauces, etc.
No scope today as the surgeon felt there was no need. I did query that Michael still looks very bloated - a bit like when he was on tpn. The surgeon felt that now Michael had a functional intestine (rather than the hard lump he had pre-surgery) that this was his normal shape. Neither of us are convinced and I guess like everything, it will be a good few months before we'll really see what the final 'picture' is.
The whole way home all I could think of was my lovely soft bed. Having also had two late nights (well for me anyway), I was feeling the worse for wear. Didn't really help that I had to drive to Oxford today. Know at certain points in the journey Michael was definitely holding onto the seat and double checking that my eyes were still open. Made it back in good time (under and hour) and literally climbed the stairs and threw myself on the bed and had an amazing hour and a half snooze. Feel so much better, although another late night awaits Lauren and me.
Do Michael and I feel like it was a successful day? Not really (although not unsuccessful). Not like we came away with any definitive answers although we both realise this is the nature of bowel transplant. Hopefully (for others), 10 years down the road, there will be more precise answers on the sort of queries we have.
xx
Not too much hanging around today, although we were still there till after 1pm. Bloods took forever as usual and then we met with the nurse to go through any problems we were experiencing. Most of our questions related to the feed, so we held off until our next meeting. The Nutritionist believes the problems Michael is experiencing is definitely from the new drug he was put on before he came out of hospital, which he stopped nearly two weeks ago. This takes about 14 days to clear from the body and therefore we will see if everything calms down by the latest, Saturday. My gut feeling (don't normally talk about my gut) is that it wont make any difference, and it's just the actual feed that's causing Michael the problems. But it's all trial and error at the moment, and we'll see what happens. She did give us a new feed to try out (guinea pig style!) if things don't improve and see if that makes a difference. Food was also discussed and she feels at the moment, Michael should try and keep to a soft diet - ie. custards, yoghurts, mushed vegetables (bet you can see his face if I gave him that!), cheese sauces, etc.
No scope today as the surgeon felt there was no need. I did query that Michael still looks very bloated - a bit like when he was on tpn. The surgeon felt that now Michael had a functional intestine (rather than the hard lump he had pre-surgery) that this was his normal shape. Neither of us are convinced and I guess like everything, it will be a good few months before we'll really see what the final 'picture' is.
The whole way home all I could think of was my lovely soft bed. Having also had two late nights (well for me anyway), I was feeling the worse for wear. Didn't really help that I had to drive to Oxford today. Know at certain points in the journey Michael was definitely holding onto the seat and double checking that my eyes were still open. Made it back in good time (under and hour) and literally climbed the stairs and threw myself on the bed and had an amazing hour and a half snooze. Feel so much better, although another late night awaits Lauren and me.
Do Michael and I feel like it was a successful day? Not really (although not unsuccessful). Not like we came away with any definitive answers although we both realise this is the nature of bowel transplant. Hopefully (for others), 10 years down the road, there will be more precise answers on the sort of queries we have.
xx
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