Well 20 years ago, we'd just arrived at our wonderful hotel in St Lucia - blue skies, blue sea, sun, palm trees. Tonight, we'll be spending the evening in front of the TV (catching up with Downton Abbey if I get my choice. Michael wants to watch Nathan's Bar Mitzvah dvd which we only just got back - too much emotion there and I'm not sure if I want to spend the evening in tears), just the two of us. The kids are round at friends celebrating but as much as we love our friends and their kids, too much risk of catching germs, so it's just the two of us and Waffle.
Michael had a hair cut yesterday and looks soo much better. Shame he's not feeling it though - bit of a tummy ache all day. No point in asking why, cause who knows?!? He has been doing ok with food, although he does still treat me like the ogre when I place a plate (always a small one) in front of him. Yesterday he managed a small piece of chicken and a roast potato; today we had a snack lunch as we'd had such a late breakfast (actually, I've just realised he skipped breakfast). I split the remains of Lauren's birthday cake between him and Lauren. Cannot describe the look on his face but the 'uh' said it all. We had tea at Michael's sister, although he refused the rolls and went for crackers instead (can people become addicted to crackers?). Maybe the only reason he's just told me that he's had a stomach ache all day is to preempt his refusal of supper.
My task when the kids return back to school and we go back to some order of assemblance is to ensure he starts eating more. Because I was out the house this morning whilst he was showering, by the time I got home I didn't think about breakfast and naturally, neither did he. In the usual Michael way, he's very happy with his tube feed - it's easy, no chewing required. The Nutritionist did ask last week how many calories he thought he was eating - honestly have no idea. Wouldn't know how many calories in a slice of chicken, or a piece of birthday cake, a slice of smoked salmon. Michael's writing it all down and I assumed the hospital would work out what the daily calorie intake was. I have no idea what they are aiming for before they can start to reduce his feed.
We're still trying to work out whether it's the feed that's increasing his major stoma output and the hospital have suggested he puts the feed on slightly later and sees what the effect is. Last night we were at friends for supper. Shortly after Michael attached himself to the feed, he had to make a major dash to the loo as he said his stoma was streaming out. I sat round the table with our friends trying to work out why this would happen (everyone's a Doctor!!) - we deduced that it obviously wasn't the feed itself as there was more out put than input. Perhaps he's now suffering with irritable bowel (how cruel would that be) - but our final diagnosis???? Absolutely no idea. Meanwhile, Michael dealt with it all very calmly - obviously makes a difference when you're with friends. Sure he wouldn't have felt the same if we'd been out at a restaurant or in a meeting (and he won't be for some time!). 7 weeks ago he couldn't even look at the stoma and now it's become dinner conversation.
I have to change Michael's Picc Line dressing each week and clean the area. It's been a weekly event for over a year now - first with his original Picc, then his Hickman and now with the new Picc. Removing the old dressing is quite painful although less so that when I had to remove it from his Hickman which was on his hairy chest. I've now got to flush his TPN line (Picc is split in two - one for his drugs and the other for the TPN which thankfully has never had to be used) with Hepsal which stops any clogging up of the line. Michael does all his drugs himself so it's been a while since I've had to administer anything - little bit out of practice. Changed all the dressings and then filled the syringe with the Hepsal. Minor fault, forgot to take the needle out (obviously I'm not injecting into his skin so not needed) - although I would have obviously noticed when I went to inject. Michael was not happy with my faux pax - he's getting really good at giving me 'the look'. I calmly took the needle out so I could carry on with the injection but I get the feeling he'll be watching more closely next time. He's so not as laid back as he used to be - I've become the calming influence (and that's quite something). Michael is definitely more panicky - worrying about every little change (and error made by his wife!). I do seem to spend more time trying to reassure him. Perhaps I'm just getting to realise what there is to panic about and what we can ignore (or maybe that should be panic less about rather than ignore).
2011 has somewhat of a rollercoaster:
The beginning of January we were expected to carry on our lives as normal (Michael feeling sick all the time, on tpn and not able to work).
By the end of January, having sought a second opinion in New York, we were on the road to bowel transplant.
February took us to Oxford for an initial consultation. We went very apprehensively, believing there was no way we'd every have surgery anywhere but the States. Having been completely bowled over by the Surgeon, it looked like transplant (if approved) was going to happen in Oxford.
March was the beginning of it all, with provisional tests.
By June, we knew it was a 'go' and we just had to wait for confirmation on whether Michael needed a new stomach and pancreas as well.
July was a real break from it all with the wonderful celebrations for Nathan's Bar Mitzvah.
August was the most amazing family cruise to celebrate my parents' 50th.
Back home, confirmation of bowel only - then on the list and 'waiting'.
8 October 2011 - the true rollercoaster began.
To you all, we wish you a healthy & happy New Year.
Let's see what 2012 brings.......
xx
31 December 2011
29 December 2011
Thursday morning
I'm back!!! I know it's been quite a few days since I've blogged but although it's been the restful holiday season, I don't seem to have had a minute to myself. In true form we've been sleeping in, seeing family and friends, chilling, watch tv and eating too much. And there's me saying I haven't had any time!
May sound all quite normal for us, but it's been hard for Michael. Sunday, we were with my family and he coped with the day very well. Had a little lunch, fell asleep in the armchair for the afternoon and the planned walk with my Dad never happened!! To be honest, he wouldn't have done anything different at home. It was just lovely us all being together, out of the house.
Monday we were with good friends in the afternoon - another relaxing day. By 7pm though Michael was tiring - he hadn't managed the afternoon armchair sleep and felt he just needed some quiet time. He was happy for me to take him home (gave me an opportunity to give poor Waffle a quick walk) so he could sort his feed and stoma out, and I went back to our friends. At one point when our eldest saw Dad and me getting ready to leave, he did resign himself to the fact that they were also leaving and I could see the disappointment in his face, knowing that everyone else was staying but, as always, our famiy were leaving first. The relief on his face when I said they were staying and I was coming back. Poor kids - they're so used to the Seres always leaving earlier than everyone!!
Did then get an aggitated bbm from Michael - his output had increased tremendously since getting home and he was a bit concerned. We both agreed there was no point in panicking - it could all wait til Wednesday's hospital visit.
Tuesday was the kids' treat to the theatre. On the way there we passed the Wellington Hospital - told the kids that 23 years ago, when Daddy and I first started going out, that's the hospital he was in. Whereas most people show their kids the romantic places in their parents' past, we can show our kids all the hospitals Daddy's been in!!
Billy Elliot - fabulous!! Unfortunately poor Michael couldn't come. I know if I was a nicer person, I would have booked out the whole theatre so there was no chance of getting anyone's germs. Maybe when we're both working again I'll think about that one. We had a lovely time and yes, the four of us are quite used to going out without Michael, but it's such a shame and so unfair.
Yesterday was our baby's 12th birthday and where was Michael? At the hospital - great timing. Although, when she was born, he'd only just come out of hospital after another operation and about half an hour after she popped out he went home cause HE was tired!! And then, for the next 3 years, on her birthday, he was back for further surgery. Still remember schlepping this little pink bundle on the train and up the stairs (amazing how no one ever helps a lady with a buggy!!) to visit Daddy in hospital. Anyway, just knowing that Daddy was going to be there, at some stage on her birthday was good enough for Lauren. He may have missed the present opening ceremony (like she was going to wait!) but he was there for our takeaway and movie in the evening and she was more than happy.
Having just read the above myself, it sounds like all is going great, and it is, to a point. Michael's home which is fab but he's finding that difficult. His morning regime takes a good hour (although I did notice it's getting quicker each day) and he's got to constantly monitor his input and output (from all directions!). He did mention at hospital yesterday how hard the whole 'home' thing is and they did ask whether he'd like to be in hospital instead - absolutely not. I just think neither of us appreciated how tough it would be. We assumed that coming home from Oxford meant that he would be over the worst. That's definitely not the case - knowing that the 'rejection' period still isn't over and waiting on every test reslt, not knowing what the Doctors are going to say - whether they'll call him in for another period of hospitalisation, is draining and constantly worrying. Yes - we do have periods when we (sort of) forget about bowels but it's never for very long.
Today is our 20th Anniversary (really really can't believe it's 20 years!!) and there we were lying in bed reading each others anniversary cards, and how to kill the moment - Michael pulled out his little diary to write down his stoma output for the night. Romance is so not dead!!! It really has been a rollercoaster 20 years - can't even begin to calculate how many times I've visited Michael in hospital in that time but we can only hope the next 20 years will, in time, include far less hospital visits!!
May sound all quite normal for us, but it's been hard for Michael. Sunday, we were with my family and he coped with the day very well. Had a little lunch, fell asleep in the armchair for the afternoon and the planned walk with my Dad never happened!! To be honest, he wouldn't have done anything different at home. It was just lovely us all being together, out of the house.
Monday we were with good friends in the afternoon - another relaxing day. By 7pm though Michael was tiring - he hadn't managed the afternoon armchair sleep and felt he just needed some quiet time. He was happy for me to take him home (gave me an opportunity to give poor Waffle a quick walk) so he could sort his feed and stoma out, and I went back to our friends. At one point when our eldest saw Dad and me getting ready to leave, he did resign himself to the fact that they were also leaving and I could see the disappointment in his face, knowing that everyone else was staying but, as always, our famiy were leaving first. The relief on his face when I said they were staying and I was coming back. Poor kids - they're so used to the Seres always leaving earlier than everyone!!
Did then get an aggitated bbm from Michael - his output had increased tremendously since getting home and he was a bit concerned. We both agreed there was no point in panicking - it could all wait til Wednesday's hospital visit.
Tuesday was the kids' treat to the theatre. On the way there we passed the Wellington Hospital - told the kids that 23 years ago, when Daddy and I first started going out, that's the hospital he was in. Whereas most people show their kids the romantic places in their parents' past, we can show our kids all the hospitals Daddy's been in!!
Billy Elliot - fabulous!! Unfortunately poor Michael couldn't come. I know if I was a nicer person, I would have booked out the whole theatre so there was no chance of getting anyone's germs. Maybe when we're both working again I'll think about that one. We had a lovely time and yes, the four of us are quite used to going out without Michael, but it's such a shame and so unfair.
Yesterday was our baby's 12th birthday and where was Michael? At the hospital - great timing. Although, when she was born, he'd only just come out of hospital after another operation and about half an hour after she popped out he went home cause HE was tired!! And then, for the next 3 years, on her birthday, he was back for further surgery. Still remember schlepping this little pink bundle on the train and up the stairs (amazing how no one ever helps a lady with a buggy!!) to visit Daddy in hospital. Anyway, just knowing that Daddy was going to be there, at some stage on her birthday was good enough for Lauren. He may have missed the present opening ceremony (like she was going to wait!) but he was there for our takeaway and movie in the evening and she was more than happy.
Having just read the above myself, it sounds like all is going great, and it is, to a point. Michael's home which is fab but he's finding that difficult. His morning regime takes a good hour (although I did notice it's getting quicker each day) and he's got to constantly monitor his input and output (from all directions!). He did mention at hospital yesterday how hard the whole 'home' thing is and they did ask whether he'd like to be in hospital instead - absolutely not. I just think neither of us appreciated how tough it would be. We assumed that coming home from Oxford meant that he would be over the worst. That's definitely not the case - knowing that the 'rejection' period still isn't over and waiting on every test reslt, not knowing what the Doctors are going to say - whether they'll call him in for another period of hospitalisation, is draining and constantly worrying. Yes - we do have periods when we (sort of) forget about bowels but it's never for very long.
Today is our 20th Anniversary (really really can't believe it's 20 years!!) and there we were lying in bed reading each others anniversary cards, and how to kill the moment - Michael pulled out his little diary to write down his stoma output for the night. Romance is so not dead!!! It really has been a rollercoaster 20 years - can't even begin to calculate how many times I've visited Michael in hospital in that time but we can only hope the next 20 years will, in time, include far less hospital visits!!
25 December 2011
Christmas Day!!
Happy holidays!!
Already feeling guilty about yesterday's blog, although I'm going to blame Michael for moping rather than just saying he felt rough.
Today is already a better day - a few smiles. Even came downstairs (having spent over 1 hour getting himself washed and sorted) and said he wanted something to eat. Was that for my benefit or his - whatever, he had a piece of toast with banana.
Justine
read my blog:www.the-transplant-wife.blogspot.com
24 December 2011
Saturday Evening
I feel a little redundant now - what can I tell you about Michael's progress that he hasn't already told you in his blog?? Well, at least you all know my name as I notice he only ever refers to me as the 'my wife'!!!! Think perhaps I'll start referring to him as the 'grumpy patient'.
Think my job now will be to tell you how things are in our daily life now that Michael is home. I'd love to say it's fabulous and our life is returning to some sort of normality, but the truth is..... it's not. Yesterday we celebrated my Dad's 80th - we all went our for lunch but, no Michael. He was obviously in Oxford (and even if he wasn't, he wouldn't have been with us as too many people in the restaurant) so as lovely as it is that he's home, he still can't be part of our daily routine. Had a lovely afternoon with all the family whilst poor Michael was on his own (having returned from his tests) - how sad is that?
Today, again, Michael hasn't been feeling fantastic (maybe he's allergic to home) and to be honest has been a bit of a grouch. When he was in hospital and feeling yuck, I think it would cheer him up that I was coming to visit and he was thrilled to see me. We'd go on our little jaunts and have some quality time. Now we're together, there's no smiles when he sees me in the morning, perhaps a couple of grunts and then he's back to moping round the house. I came home after a long walk with the dog today, ready to join Michael on a short walk, and he'd fallen asleep. So much for that idea. Then when I did suggest it, he told me he wasn't up to it today, with a look of disdain. I haven't given up though - nothing like wrapping up warm and having an evening stroll.
Michael's great intention of becoming a better eater hasn't happened yet. I hope there is a time when he starts to actually think about food. If I didn't pass anything under his nose, he'd be more than happy to rely on his 'feed'. And remember that saying 'if looks could kill' - that's what I get when I do serve him up something. He's so used to sitting at the table and watching us eat, he really doesn't expect to get any food at all. It's terribly hard trying to help him.
My Mum actually bought some Manuka Honey for him (meant to be very good for you). One spoonful a day (although I will check with the hospital before he has it). You wouldn't think that was so hard. OMG you would have thought I'd told him he had to eat mud every day. Meanwhile if I'd told him he had to take 10 extra tablets a day, or even have another injection, he'd happily agree.
Maybe it's because I thought he'd be stronger when he eventually came home, but it was all much easier when he was in hospital. That must sound awful, and don't get me wrong, I obviously want him home, but that's just how it seems at the moment. Guess (hope!) things can only get better.
PS. He's just catching up with my blog and only up to day 5 after the op. Hopefully by the time he gets up to today's blog, all will be better :)
Think my job now will be to tell you how things are in our daily life now that Michael is home. I'd love to say it's fabulous and our life is returning to some sort of normality, but the truth is..... it's not. Yesterday we celebrated my Dad's 80th - we all went our for lunch but, no Michael. He was obviously in Oxford (and even if he wasn't, he wouldn't have been with us as too many people in the restaurant) so as lovely as it is that he's home, he still can't be part of our daily routine. Had a lovely afternoon with all the family whilst poor Michael was on his own (having returned from his tests) - how sad is that?
Today, again, Michael hasn't been feeling fantastic (maybe he's allergic to home) and to be honest has been a bit of a grouch. When he was in hospital and feeling yuck, I think it would cheer him up that I was coming to visit and he was thrilled to see me. We'd go on our little jaunts and have some quality time. Now we're together, there's no smiles when he sees me in the morning, perhaps a couple of grunts and then he's back to moping round the house. I came home after a long walk with the dog today, ready to join Michael on a short walk, and he'd fallen asleep. So much for that idea. Then when I did suggest it, he told me he wasn't up to it today, with a look of disdain. I haven't given up though - nothing like wrapping up warm and having an evening stroll.
Michael's great intention of becoming a better eater hasn't happened yet. I hope there is a time when he starts to actually think about food. If I didn't pass anything under his nose, he'd be more than happy to rely on his 'feed'. And remember that saying 'if looks could kill' - that's what I get when I do serve him up something. He's so used to sitting at the table and watching us eat, he really doesn't expect to get any food at all. It's terribly hard trying to help him.
My Mum actually bought some Manuka Honey for him (meant to be very good for you). One spoonful a day (although I will check with the hospital before he has it). You wouldn't think that was so hard. OMG you would have thought I'd told him he had to eat mud every day. Meanwhile if I'd told him he had to take 10 extra tablets a day, or even have another injection, he'd happily agree.
Maybe it's because I thought he'd be stronger when he eventually came home, but it was all much easier when he was in hospital. That must sound awful, and don't get me wrong, I obviously want him home, but that's just how it seems at the moment. Guess (hope!) things can only get better.
PS. He's just catching up with my blog and only up to day 5 after the op. Hopefully by the time he gets up to today's blog, all will be better :)
22 December 2011
Thursday Evening
Haven't blogged for a couple of days - know Michael's back to blogging and I didn't want to overshadow his blog!!
So nice on Tuesday when the kids came home - they had absolutely no idea that Daddy was coming home as we only found out late morning. Nathan was sitting in the TV room with his friends when he saw Michael's dad's car coming into the driveway. Was beside himself with excitement when he realised Daddy was also in the car - 'my Dad's home', and ran to greet him at the door (together with the faithful dog at his heels!).
Lauren was dropped home by a friend - and had absolutely no idea whatsoever that he was home, until she walked into the kitchen. Another cuddle for Daddy.
Then when I brought Aaron home I told him there was something (as opposed to someone) upstairs for him. How lucky can one man be with so many people happy to see him. I should be grateful for the 'hi' that I got from them!
So how's it been having him home? Well, it's been more than 48 hours - which is longer than last time. Can't say it's been problem free though - have to say, I am feeling a bit stressy with it all. Evening 1 was absolutely fine with no hiccups but last night, after dinner (1 meatball), he had the most terrible tummy ache with a huge stoma output which continued overnight. I won't go into major detail as Michael's been quite detailed in his blog (bit of encouragement to read it if you haven't already). Anyway, he did speak with the hospital today and they aren't hugely concerned as they say it could be anything, even different foods which are affecting things. So for the rest of the day we have been assessing all the foods Michael has eaten - to be honest, it would be impossible to figure out what, if anything has had this effect. It's only going to be by trial and error that we know if there are foods which aggravate things.
Meanwhile, output slowed down completely during the day but after dinner (salmon pate) there's been a huge increase again. I just feel that we're constantly in 'standby' mode for problems - will we ever just be able to relax and enjoy a day? I'm sure we will but it does feel that each time Michael comes home, something changes. In time I guess we'll get used to what's normal and what's not. Although our life never seems to follow that normal path!!
Have to say though it is nice to have 5 of us in the house again. We're taking things very easy; kids are seeing friends, etc so Michael's having some quiet time at in the house.
We'll see what tomorrow brings as it's back to the hospital for blood tests and they'll also decide whether to do another scope/biopsy.
Look forward to giving some positive news tomorrow.
Night xx
So nice on Tuesday when the kids came home - they had absolutely no idea that Daddy was coming home as we only found out late morning. Nathan was sitting in the TV room with his friends when he saw Michael's dad's car coming into the driveway. Was beside himself with excitement when he realised Daddy was also in the car - 'my Dad's home', and ran to greet him at the door (together with the faithful dog at his heels!).
Lauren was dropped home by a friend - and had absolutely no idea whatsoever that he was home, until she walked into the kitchen. Another cuddle for Daddy.
Then when I brought Aaron home I told him there was something (as opposed to someone) upstairs for him. How lucky can one man be with so many people happy to see him. I should be grateful for the 'hi' that I got from them!
So how's it been having him home? Well, it's been more than 48 hours - which is longer than last time. Can't say it's been problem free though - have to say, I am feeling a bit stressy with it all. Evening 1 was absolutely fine with no hiccups but last night, after dinner (1 meatball), he had the most terrible tummy ache with a huge stoma output which continued overnight. I won't go into major detail as Michael's been quite detailed in his blog (bit of encouragement to read it if you haven't already). Anyway, he did speak with the hospital today and they aren't hugely concerned as they say it could be anything, even different foods which are affecting things. So for the rest of the day we have been assessing all the foods Michael has eaten - to be honest, it would be impossible to figure out what, if anything has had this effect. It's only going to be by trial and error that we know if there are foods which aggravate things.
Meanwhile, output slowed down completely during the day but after dinner (salmon pate) there's been a huge increase again. I just feel that we're constantly in 'standby' mode for problems - will we ever just be able to relax and enjoy a day? I'm sure we will but it does feel that each time Michael comes home, something changes. In time I guess we'll get used to what's normal and what's not. Although our life never seems to follow that normal path!!
Have to say though it is nice to have 5 of us in the house again. We're taking things very easy; kids are seeing friends, etc so Michael's having some quiet time at in the house.
We'll see what tomorrow brings as it's back to the hospital for blood tests and they'll also decide whether to do another scope/biopsy.
Look forward to giving some positive news tomorrow.
Night xx
20 December 2011
Tuesday
Well - after a further 12 day stint in Oxford, Michael is coming home today. Let's hope it's for a bit longer. Michael's scope/biopsy last week showed that there is no improvement with the rejection, although no worse. He started his new drug yesterday which is to stop the antibodies which he is producing. They have now actually sent his latest results to Miami for a second opinion. They are of the same thinking and believe that nothing more needs to be done in hospital and it's just a case of regular blood tests. With such a new operation there are no definitive answers but I guess a second opinion from somewhere that has undertaken so many more bowel transplants is positive.
He'll have to return this Friday and next Wednesday. Both of which are inconvenient days - my Dad's 80th and our baby's 12th, but better than him being in Oxford over the holiday period and having to schlepp there the whole time.
Obviously excited about the 'homecoming' but very apprehensive now having experienced it once and then it all 'falling apart'. If I remember correctly, he came out of UCH last year the same day as the kids finished school - bit deja vu.
He'll have to return this Friday and next Wednesday. Both of which are inconvenient days - my Dad's 80th and our baby's 12th, but better than him being in Oxford over the holiday period and having to schlepp there the whole time.
Obviously excited about the 'homecoming' but very apprehensive now having experienced it once and then it all 'falling apart'. If I remember correctly, he came out of UCH last year the same day as the kids finished school - bit deja vu.
17 December 2011
Saturday Evening
I must apologise if this blog is slightly (or may extremely) incoherent. It's been a busy week (not just driving back and forth to Oxford) and I'm beyond tired. Seem to be dragging myself through the days at the moment with very little energy for anything much. Having looked forward to bed every evening for the last few weeks, that's not even particularly inviting now as I know I don't have enough hours there. Guess I'm wallowing in a bit of self pity at the moment - although not really sure I have enough energy for that either!!
As lovely as it was this morning to wake up to a bright and sunny (if not cold) day, it just put me in a worse mood as it showed up how dusty the house really is. Seemed to be keeping up with everything until last week and now I'm just on a constant go slow. Now know how I'll be spending the majority of the day tomorrow.
Usual visit to Michael today. Did have a moment (well actually it was quite a few hours last night) when I thought I'd give today a miss. Two weeks ago I thought it was going to be our last weekend visit and here we are now still going. Felt guilty though when he texted to ask what time we'd be there. What else would we have to do? So off we trotted...... again.
I don't believe that Thursday's biopsy results came through yesterday but the latest bloods show Michael is building up antibodies to the new organ. Michael did explain it to me in a little more detail but I have to admit (as terrible as it sounds) that I sort of switched off, thinking 'something else to add to the list'. He'll start a new drug on Monday to counteract this - not sure how long til it works or whether it's an ongoing thing. Sure I'll find out more (when I listen properly!) on Monday when we see the Doctors. They did give him the option to come home for a day at the weekend but neither of us could really see any benefit. And to be honest, the hospital was so quiet today - it's not like we were interrupted at any stage by anyone. Didn't see his nurse the whole afternoon (thankfully it's not like he needs anything apart from drug time). We went for a short walk (inside) and then chilled for a bit at the little League of Friends Coffee Shop - only us as it was closed!! But nicer than spending the entire afternoon in the room.
Problem with Michael having been 'institutionalized' for so long is that he's forgotten what life at home is like. We eventually got home, I sorted the mess that seems to always be there, delivered 1 child to party, made dinner, cleared up, etc, etc, and then received a text from darling husband to ask what I thought of Strictly. Well, did I tell him what I thought - reminded him that our slave was away for the weekend so I hadn't actually sat on my bum since leaving him (apart from in the car). Think he got the message!! That's just what my life feels like at the moment - non-stop, without any time to think :(
Like to think Michael will be home this week but what's the point of getting my hopes up. So much for him having time at home before the kids break up. I've resigned myself to the fact that he'll be home..... whenever. Meanwhile, I'll keep on trekking back and forth like a yo-yo (not one of those lovely glossy ones but a dull, tired looking one, where the string's a little worn).
Good night - I know I'll sleep tight but just not for long enough xx
As lovely as it was this morning to wake up to a bright and sunny (if not cold) day, it just put me in a worse mood as it showed up how dusty the house really is. Seemed to be keeping up with everything until last week and now I'm just on a constant go slow. Now know how I'll be spending the majority of the day tomorrow.
Usual visit to Michael today. Did have a moment (well actually it was quite a few hours last night) when I thought I'd give today a miss. Two weeks ago I thought it was going to be our last weekend visit and here we are now still going. Felt guilty though when he texted to ask what time we'd be there. What else would we have to do? So off we trotted...... again.
I don't believe that Thursday's biopsy results came through yesterday but the latest bloods show Michael is building up antibodies to the new organ. Michael did explain it to me in a little more detail but I have to admit (as terrible as it sounds) that I sort of switched off, thinking 'something else to add to the list'. He'll start a new drug on Monday to counteract this - not sure how long til it works or whether it's an ongoing thing. Sure I'll find out more (when I listen properly!) on Monday when we see the Doctors. They did give him the option to come home for a day at the weekend but neither of us could really see any benefit. And to be honest, the hospital was so quiet today - it's not like we were interrupted at any stage by anyone. Didn't see his nurse the whole afternoon (thankfully it's not like he needs anything apart from drug time). We went for a short walk (inside) and then chilled for a bit at the little League of Friends Coffee Shop - only us as it was closed!! But nicer than spending the entire afternoon in the room.
Problem with Michael having been 'institutionalized' for so long is that he's forgotten what life at home is like. We eventually got home, I sorted the mess that seems to always be there, delivered 1 child to party, made dinner, cleared up, etc, etc, and then received a text from darling husband to ask what I thought of Strictly. Well, did I tell him what I thought - reminded him that our slave was away for the weekend so I hadn't actually sat on my bum since leaving him (apart from in the car). Think he got the message!! That's just what my life feels like at the moment - non-stop, without any time to think :(
Like to think Michael will be home this week but what's the point of getting my hopes up. So much for him having time at home before the kids break up. I've resigned myself to the fact that he'll be home..... whenever. Meanwhile, I'll keep on trekking back and forth like a yo-yo (not one of those lovely glossy ones but a dull, tired looking one, where the string's a little worn).
Good night - I know I'll sleep tight but just not for long enough xx
15 December 2011
Thursday 3.30pm
Feel a little 'pushed out'. Michael having a scope to get a biopsy - having it today in the hope that results come back tomorrow. Rather than seeing if it's getting better, more to check not getting worse. Michael did ask what's the plan if no worse, but he was unwilling to say. Meanwhile, I was asked to leave the room - I know Michael was happy for me to be there so do feel a little aggrieved :(
Journey in today was a nightmare because of the M25. Went on the scenic route, via Bicester Village (not that far at all so definitely a place to visit when Michael's got more strength. Already told him, in the New Year on one of our numerous visits back to Oxford, will detour there!!).
Michael had to have a couple of stitches around his peg tube (the one going into his stomach). The tube has a little plastic plate like thing which lies flat against the stomach, and should hold tightly in place, stopping the tube coming out (yuck I know!). The plate is fairly loose and they therefore wanted to hold it with a couple of stitches. This was done in the room with a local anaesthetic (had to have two as first one didn't work entirely). Michael was keen to look at it all being done but meanwhile he's face was a picture (of pain). It obviously didn't hurt but as I know myself, the mind plays funny games. I told him therefore not to look but he wanted to. Have to say, if that size needle was going in me, I would have passed out immediately. Was quite impressed that I did manage to watch the needle going in (not dissimilar to sewing a piece of material!!!!!).
We made it to M&S - nothing enticed Michael but I did buy dinner for tonight. Very conscious now of not going into shops where there's too many people. Thankfully all was relatively quiet. Had a mooch in the other shops and then had a coffee/lemonade and caramel shortbread break. We had to return earlier than expected as we got a call to say they were going to do the scope.
And that leads us back to now. Me - rejected - sitting waiting for Michael.
Justine
read my blog:www.the-transplant-wife.blogspot.com
14 December 2011
Wednesday Evening
Fabulous news, we've found a Marks & Spencer. The Transplant Coordinator told us where the nearest one is - just round the corner. If only we'd asked earlier!!! So excited now for our trip out tomorrow. Nothing like some retail therapy - although not sure window shopping counts as therapy?
The Team have advised Michael that he'll have his biopsy early Friday morning in the hope they can rush the results through by the end of the day. If all ok, maybe he'll be home for the weekend. That would be great, although I'm already preparing for another weekend schlepping to Oxford. No point in being disappointed - again.
The drive home was the worst ever - the Oxford end of the M40 was sleeting and the vision was awful. It's hard enough driving on the motorway in the dark, let alone with the sleet. As long as it's only sleet - I can deal with that. Just don't need snow - although I don't think any is predicted at the moment. Because of the journey, was late to pick up Nath & Lauren from school. They both had after school sport matches - yet again they lost, although for a change Lauren's team actually scored a goal and Nathan's rugby team weren't thrashed.
Tonight Lauren and I watched my niece's show (an unusual take on Finding Nemo - don't think they used the same script writers). The kids all seemed to have a fantastic time on stage - more laughing than anything else. It most certainly took my mind off things. Just made me think - no matter how bad things seem - there's always something worse going on!!!!! (joke really).
Off to bed - too much excitement for one day, and got to prepare myself for tomorrow's trip to M & S. Not sure if Michael's as excited as me.
Night xx
The Team have advised Michael that he'll have his biopsy early Friday morning in the hope they can rush the results through by the end of the day. If all ok, maybe he'll be home for the weekend. That would be great, although I'm already preparing for another weekend schlepping to Oxford. No point in being disappointed - again.
The drive home was the worst ever - the Oxford end of the M40 was sleeting and the vision was awful. It's hard enough driving on the motorway in the dark, let alone with the sleet. As long as it's only sleet - I can deal with that. Just don't need snow - although I don't think any is predicted at the moment. Because of the journey, was late to pick up Nath & Lauren from school. They both had after school sport matches - yet again they lost, although for a change Lauren's team actually scored a goal and Nathan's rugby team weren't thrashed.
Tonight Lauren and I watched my niece's show (an unusual take on Finding Nemo - don't think they used the same script writers). The kids all seemed to have a fantastic time on stage - more laughing than anything else. It most certainly took my mind off things. Just made me think - no matter how bad things seem - there's always something worse going on!!!!! (joke really).
Off to bed - too much excitement for one day, and got to prepare myself for tomorrow's trip to M & S. Not sure if Michael's as excited as me.
Night xx
Wednesday 1pm
Didn't really want to get my hopes up, but was quietly optimistic that Michael would be home today or tomorrow. Alas, no! Biopsy results show there are still some dead cells (rejection). Less than last week but still evident and they want to be cautious. Therefore, they want to do another scope at the end of the week - so unlikely results will be back before Monday.
There are still plenty of healthy cells and apparently new cells are always being produced. We're just waiting for them all to be lovely and healthy. We're both gutted but realise it's best that they're are being over cautious. Michael spoke with the Professor (of transplant dept) yesterday who couldn't stress enough how over cautious they had to be as the bowel can 'go off' very quickly and therefore it's imperative they constantly monitor the progress (ie. Lots of biopsies).
I did query today whether the bloods ever showed rejection. They don't - it's through the biopsy and the output of the stoma.
Michael is soooo very cheesed off. Not quite sure how I can cheer him up - perhaps a trip out to Waitrose. If only there was an M&S nearby :).
Will tell you all about it later - Michael is beyond excited!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
There are still plenty of healthy cells and apparently new cells are always being produced. We're just waiting for them all to be lovely and healthy. We're both gutted but realise it's best that they're are being over cautious. Michael spoke with the Professor (of transplant dept) yesterday who couldn't stress enough how over cautious they had to be as the bowel can 'go off' very quickly and therefore it's imperative they constantly monitor the progress (ie. Lots of biopsies).
I did query today whether the bloods ever showed rejection. They don't - it's through the biopsy and the output of the stoma.
Michael is soooo very cheesed off. Not quite sure how I can cheer him up - perhaps a trip out to Waitrose. If only there was an M&S nearby :).
Will tell you all about it later - Michael is beyond excited!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
12 December 2011
Monday
Guess where I went today? Yep - Oxford. Bit later today as had someone picking up something I'd sold on ebay. Having a mass clear out - it's amazing what people will buy pre-Christmas. Think Michael's a bit concerned that when he does come home, the furniture's going to be gone!!
Apart from the most appalling haircut, Michael looked well. The rushed haircut he had on Thursday was awful - moral to that is always stick to the same barber!!! He's doing ok - just fed up with hospital life and the monotony of it all. Still feeling sick a lot of the time - just have to give that one time.
Was told in the morning that he would be having the scope (biopsy) today - just before I left some of the Team came round but were unsure when the scope would take place. Michael's surgeon is away on his hols (this is quite a rarity) and his second in command would be undertaking the scope. The Team told us that if it wasn't today, it would be Thursday. I was far from happy with this and said, that would mean it would be a further week once we had the results. At this point all the praise I had previously had for Oxford, in comparison to Michael's hospital 'residence' last year, evaporated - it felt like we were back to that constant waiting game before anything happened. Meanwhile, by the time I got back in the car to go home, Michael rang to tell me he was about to be scoped. All praise duly reinstated!!
Michael missed another school show tonight. It was the Year 7 Chanukah Show - short and sweet. Bit of a rush to get there but made it just in time. Just a shame my daughter is so shy (!?!?!?!) - Michael seems to have missed so much in the last year or so :( He'll also miss her Les Mis performance in January as they'll just be too many people in the Theatre :(
Usually takes no more than 2 days for the results of the biopsy - so maybe Michael will be home Wednesday or Thursday. Not going to get my hopes up - will just wait and see. Kids keep asking and all I can tell them is as soon as the Doctors are happy. Maybe they'll just get a nice surprise one day this week on their return from school. Just hope he's home before the kids break up for the hols - would be nice to have a couple of days peace.
Night xx
Apart from the most appalling haircut, Michael looked well. The rushed haircut he had on Thursday was awful - moral to that is always stick to the same barber!!! He's doing ok - just fed up with hospital life and the monotony of it all. Still feeling sick a lot of the time - just have to give that one time.
Was told in the morning that he would be having the scope (biopsy) today - just before I left some of the Team came round but were unsure when the scope would take place. Michael's surgeon is away on his hols (this is quite a rarity) and his second in command would be undertaking the scope. The Team told us that if it wasn't today, it would be Thursday. I was far from happy with this and said, that would mean it would be a further week once we had the results. At this point all the praise I had previously had for Oxford, in comparison to Michael's hospital 'residence' last year, evaporated - it felt like we were back to that constant waiting game before anything happened. Meanwhile, by the time I got back in the car to go home, Michael rang to tell me he was about to be scoped. All praise duly reinstated!!
Michael missed another school show tonight. It was the Year 7 Chanukah Show - short and sweet. Bit of a rush to get there but made it just in time. Just a shame my daughter is so shy (!?!?!?!) - Michael seems to have missed so much in the last year or so :( He'll also miss her Les Mis performance in January as they'll just be too many people in the Theatre :(
Usually takes no more than 2 days for the results of the biopsy - so maybe Michael will be home Wednesday or Thursday. Not going to get my hopes up - will just wait and see. Kids keep asking and all I can tell them is as soon as the Doctors are happy. Maybe they'll just get a nice surprise one day this week on their return from school. Just hope he's home before the kids break up for the hols - would be nice to have a couple of days peace.
Night xx
11 December 2011
Sunday
I wish there was something positive to say but unfortunately the only thing I can say is ....... frustrated, disappointed and depressed. Can't even be bothered to think about what's going on.
Michael's now on 10mg a day of steroids, and will also be put on further immuno-suppressants which will obviously further reduce his immunity. This will be for the long term - once you've had any sort of rejection, that's the usual course. He's likely to have another scope/biopsy on Tuesday and then we'll wait for the results. Not even going to bother telling you how I feel about all of this - wouldn't want to put my depression on you.
There is some fab news though - Michael's been chosen to be a torch bearer for the Olympics. That really is a 'wow'. No details yet but we'll let you know and expect you all there (wherever there is) lining the streets and cheering him along.
Looking forward to giving you some positive news. xx
Michael's now on 10mg a day of steroids, and will also be put on further immuno-suppressants which will obviously further reduce his immunity. This will be for the long term - once you've had any sort of rejection, that's the usual course. He's likely to have another scope/biopsy on Tuesday and then we'll wait for the results. Not even going to bother telling you how I feel about all of this - wouldn't want to put my depression on you.
There is some fab news though - Michael's been chosen to be a torch bearer for the Olympics. That really is a 'wow'. No details yet but we'll let you know and expect you all there (wherever there is) lining the streets and cheering him along.
Looking forward to giving you some positive news. xx
10 December 2011
Saturday Evening
It's been an odd few days with Michael having gone back into hospital. On the one hand his short stay at home was so quick, it's like he's never really been back. On the other hand, I don't really feel like he was ever back and we're just carrying on with hospital mode. Think though this time round is harder for the kids - they've had a 'taster' of Dad at home and now just want him back.
Today was difficult as only Lauren could come and see him in Oxford. Boys have both got colds and, yes, they would have been with him if he was still at home but to sit in the hospital room spreading all their germs would just be irresponsible of me. So we had a girls trip to Oxford. Michael's looking well but is clearly cheesed off. Today was his last kick of steroids. The high dosage is playing havoc with his joints. He's had joint problems for numerous years because of his long periods of steroid use when his Crohn's flared up. It's causing him major pain, particular in his knees. Apparently this is quite normal - even though when we asked what the side effects were from the 500mg steroids, we were told 'nothing'. The pain is generally just after having the dose for which they give him paracetomol. Hopefully now he's finished the 3 day course, the pain will go.
As expected, Michael won't be coming home tomorrow - that would just be too perfect. Of course I'm disappointed (again) but better that they keep him in until they are sure the steroids have worked and everything is improving. His tac levels are good and his kidney function has also settled but another scope is needed to see what effect the steroids have had on the rejection. Not sure yet whether they'll scope on Monday or Tuesday but, whenever, we'll definitely wait for the results before zooming off home. In hindsight, we really shouldn't have gone home before last week's scope (not that it was our decision). I know it would have meant that Michael wouldn't have had the two nights at home that he did but it would also mean that we all wouldn't have been so disappointed and frustrated. In a way, it's Michael that's finding it harder to deal with. He so loved being home, being in his own bed and having the kids around and now he's back in his lonely room.
Generally we've been told with rejection that the first signs are temperature and change in output from the stoma. You know Michael, he never follows the trend. He's had no temperature and it wasn't until yesterday that the output has changed - it increased yesterday, slightly slowing down today. I'm hopeful that perhaps because they noticed the rejection from the biopsy, before Michael got the symptoms, that it will all be sorted quite quickly. I think (so hard to absorb all the information) that Michael will either come home on a smaller dosage of steroids (about 60mg) or a further (as well as the tacrolimus) antirejection/immunosuppressant.
Most disappointing (although sort of obvious) is that this, as Michael's first rejection (and hopefully last), will put his 1 year clear back by 9 weeks. 1 year free of problems basically means we can relax a little more and that Michael should be able to have his stoma reversed. Episodes of rejection means the year has to start again. I don't believe this had ever been discussed before but once mentioned, it seemed (frustratingly) obvious. Also highlighted the severity of what Michael's been through and the path we have ahead of us. Michael should be home soon but it's not as straight forward as being home and carrying on as normal - well not quite yet anyway. Will we now always be looking out for signs of rejection? How scary is all of this :(
Michael's doing ok with eating. Not huge portions or anything, but definitely getting the taste for different things - not just chocolate. He had chicken soup today - didn't think it would taste the same out of a plastic cup, so we even took with us a nice bowl and spoon (Lauren thought I was mad). Had some home made salmon pate (thanks Mum) and crackers, obviously some crisps and some sweets. Whilst he was at home he also tried some salt beef (yummy but a bit heavy), some roast potatoes, trifle, butternut squash soup as well as the usual crackers and cheese. I did have to give him a talking to though - for the short time he was at home, if I mentioned food, he just thought 'crackers and cheese'. As much as I don't want to pressure him in anyway, without any encouragement he'll never try anything and therefore his calorie intake just won't increase. So, I decided the way forward was, particularly at mealtimes, to just place food in front of him and hope for the best. I just wish I had a camera when I placed the bowl of butternut squash soup in front of him - just assumed he wouldn't be having any and I'd given it to the wrong person. Not sure who's worse, him or Lauren!!! Anyway, once he realised there was no one else to feed, he did actually eat it and (I think) enjoyed it. Think this will be the hardest task for me - he knows the whole eating thing is 'mind of matter' and he does want to be a better eater - but it's not going to be easy.
So another week over - and a lot has happened. So much for our family Friday and Saturday night in. There's always next week.
Night xx
Today was difficult as only Lauren could come and see him in Oxford. Boys have both got colds and, yes, they would have been with him if he was still at home but to sit in the hospital room spreading all their germs would just be irresponsible of me. So we had a girls trip to Oxford. Michael's looking well but is clearly cheesed off. Today was his last kick of steroids. The high dosage is playing havoc with his joints. He's had joint problems for numerous years because of his long periods of steroid use when his Crohn's flared up. It's causing him major pain, particular in his knees. Apparently this is quite normal - even though when we asked what the side effects were from the 500mg steroids, we were told 'nothing'. The pain is generally just after having the dose for which they give him paracetomol. Hopefully now he's finished the 3 day course, the pain will go.
As expected, Michael won't be coming home tomorrow - that would just be too perfect. Of course I'm disappointed (again) but better that they keep him in until they are sure the steroids have worked and everything is improving. His tac levels are good and his kidney function has also settled but another scope is needed to see what effect the steroids have had on the rejection. Not sure yet whether they'll scope on Monday or Tuesday but, whenever, we'll definitely wait for the results before zooming off home. In hindsight, we really shouldn't have gone home before last week's scope (not that it was our decision). I know it would have meant that Michael wouldn't have had the two nights at home that he did but it would also mean that we all wouldn't have been so disappointed and frustrated. In a way, it's Michael that's finding it harder to deal with. He so loved being home, being in his own bed and having the kids around and now he's back in his lonely room.
Generally we've been told with rejection that the first signs are temperature and change in output from the stoma. You know Michael, he never follows the trend. He's had no temperature and it wasn't until yesterday that the output has changed - it increased yesterday, slightly slowing down today. I'm hopeful that perhaps because they noticed the rejection from the biopsy, before Michael got the symptoms, that it will all be sorted quite quickly. I think (so hard to absorb all the information) that Michael will either come home on a smaller dosage of steroids (about 60mg) or a further (as well as the tacrolimus) antirejection/immunosuppressant.
Most disappointing (although sort of obvious) is that this, as Michael's first rejection (and hopefully last), will put his 1 year clear back by 9 weeks. 1 year free of problems basically means we can relax a little more and that Michael should be able to have his stoma reversed. Episodes of rejection means the year has to start again. I don't believe this had ever been discussed before but once mentioned, it seemed (frustratingly) obvious. Also highlighted the severity of what Michael's been through and the path we have ahead of us. Michael should be home soon but it's not as straight forward as being home and carrying on as normal - well not quite yet anyway. Will we now always be looking out for signs of rejection? How scary is all of this :(
Michael's doing ok with eating. Not huge portions or anything, but definitely getting the taste for different things - not just chocolate. He had chicken soup today - didn't think it would taste the same out of a plastic cup, so we even took with us a nice bowl and spoon (Lauren thought I was mad). Had some home made salmon pate (thanks Mum) and crackers, obviously some crisps and some sweets. Whilst he was at home he also tried some salt beef (yummy but a bit heavy), some roast potatoes, trifle, butternut squash soup as well as the usual crackers and cheese. I did have to give him a talking to though - for the short time he was at home, if I mentioned food, he just thought 'crackers and cheese'. As much as I don't want to pressure him in anyway, without any encouragement he'll never try anything and therefore his calorie intake just won't increase. So, I decided the way forward was, particularly at mealtimes, to just place food in front of him and hope for the best. I just wish I had a camera when I placed the bowl of butternut squash soup in front of him - just assumed he wouldn't be having any and I'd given it to the wrong person. Not sure who's worse, him or Lauren!!! Anyway, once he realised there was no one else to feed, he did actually eat it and (I think) enjoyed it. Think this will be the hardest task for me - he knows the whole eating thing is 'mind of matter' and he does want to be a better eater - but it's not going to be easy.
So another week over - and a lot has happened. So much for our family Friday and Saturday night in. There's always next week.
Night xx
8 December 2011
Thursday Evening
Sitting here, exhausted and fed up, I'm not actually sure Michael was home at all. Wasn't like we actually had time to slot into any normality. So, I'm here and he's back in Oxford. Yes, it was our choice for him to stay there but it seemed the sensible option. We could have driven back and forth each day for him to have his intravenous steroids but it would have been totally exhausting for Michael and we have to accept that if there are any further complications, the best place to be is there. I'm staying optimistic that he'll have his three day course and then his bloods will confirm all is back on track. I'm actually not sure if he'll have to have another biopsy before he goes home.
Basically, the problem is that the biopsy showed that various parts of the new intestine are rejecting. I believe it's a mild rejection and from what we've discussed in the past, this is not unusual and the high steroids should kick everything back to normal. Can't help wonder whether if he should have had a scope a few weeks back - guess it's normal to start looking at the ifs and whens. It's obviously very worrying but I can't say the Team were running around in a panic so I have to assume it really is all under control.
I didn't stay too long at this hospital. And while I was there I actually fell asleep anyway - so what good was I to Michael? I wanted to get home before the kids arrived home. Didn't feel it was fair to have to tell them on the phone that Michael had gone back into hospital - I wanted to be at home when they got back from school. The boys were amazing - they are so very mature about the whole thing. Of course they were upset but totally understood that it was best for Daddy to go back in. Lauren on the other hand finds it all much harder - she was so excited that Michael was home - even doing her homework sitting next to him. For him then not to be there again was very disappointing for her and although she didn't say this I could tell by her 'mood' that she didn't know how to deal with it all. Thankfully she did have a busy afternoon/evening and didn't have too much time to dwell on things.
Me? I'm beyond disappointed. As always, I'm holding it all together but think that's more because I'm too tired to 'break'. Must admit did have a bit of a scream this afternoon, naturally over something really serious - one of the kids coats fell of the hanger. Think they just thought I was having one of my 'moments' but at least when I got back home the coat was back on the hanger!!
My bed (presently my best friend) is calling me!! Will keep you updated with developments.
Night. x
Basically, the problem is that the biopsy showed that various parts of the new intestine are rejecting. I believe it's a mild rejection and from what we've discussed in the past, this is not unusual and the high steroids should kick everything back to normal. Can't help wonder whether if he should have had a scope a few weeks back - guess it's normal to start looking at the ifs and whens. It's obviously very worrying but I can't say the Team were running around in a panic so I have to assume it really is all under control.
I didn't stay too long at this hospital. And while I was there I actually fell asleep anyway - so what good was I to Michael? I wanted to get home before the kids arrived home. Didn't feel it was fair to have to tell them on the phone that Michael had gone back into hospital - I wanted to be at home when they got back from school. The boys were amazing - they are so very mature about the whole thing. Of course they were upset but totally understood that it was best for Daddy to go back in. Lauren on the other hand finds it all much harder - she was so excited that Michael was home - even doing her homework sitting next to him. For him then not to be there again was very disappointing for her and although she didn't say this I could tell by her 'mood' that she didn't know how to deal with it all. Thankfully she did have a busy afternoon/evening and didn't have too much time to dwell on things.
Me? I'm beyond disappointed. As always, I'm holding it all together but think that's more because I'm too tired to 'break'. Must admit did have a bit of a scream this afternoon, naturally over something really serious - one of the kids coats fell of the hanger. Think they just thought I was having one of my 'moments' but at least when I got back home the coat was back on the hanger!!
My bed (presently my best friend) is calling me!! Will keep you updated with developments.
Night. x
Thursday 1.05 pm
We're back again - different room with a nice big window. Surprisingly nothing's changed since we were last here.
Michael's going to have a 3 day course of steroids intravenously - 500mg each day. To give you an indication of what a huge dose that is - when Michael's Crohn's was at it's worst, the highest dosage would have been no more than 60mg. Obviously loads of bloods tests each day as well to check levels of everything.
Didn't have time to blog yesterday but was going to tell you how life was with Michael at home. Not much point now - back to hospital mode. Hoping by Sunday he'll be back at home and I resume 'life at home'.
Not looking forward to telling the kids later - I always get the tough jobs :(
Justine
read my blog:www.the-transplant-wife.blogspot.com
Thursday
Day has not started well. Hospital called to say they're not happy with biopsy results - shows slight rejection so Michael needs a kick of steroids. Should be for three days but that obviously depends on what effect the steroids have. Michael has decided to stay in rather than trek back and forth each day.
I was much calmer than Michael - the look on his face!! I'll be the positive one - guess this is what we're going to face for the next year.
No rush to get back so he's just having his much needed haircut.
Will keep u posted!
Justine
read my blog:www.the-transplant-wife.blogspot.com
6 December 2011
Tuesday Evening
Well, at last he's home. It was so nice to think this morning that it was going to be my last Oxford routine. The thought didn't last too long as on the way, Michael called to say he already needed to be back for bloods tomorrow and then again on Friday. Guess I can't complain - don't have to go back on Thursday!!
When I arrived, the lady from the company who supplies the pump for Michael's feed was there giving detailed information about the equipment and how to use it. I had a quick catch up session. We did query a few bits of information - we had been told (not mentioning any names - but you know who you are!!!) that if the tube became clogged, putting coca cola down it often cleared any problems. We were told that soda water was better as coke tended to corrode the tube!! Lucky we asked - although coke has now been advised by two other people. Anyway compared to tpn, it's all fairly simple. Same idea, has the feed overnight but if he needs to go out, there's a little backpack for the feed to go in (a streamlined version of the large tpn bag). All sorted, and left with loads of supplies.
Next was a scope. He actually hadn't had one about 3 weeks. Guess that's good that they didn't feel the need. Anyway, a biopsy was taken and we'll wait for the results. Maybe they'll have them by the time we return on Friday? Once they've scoped, a new stoma bag has to be put on - Michael's doing amazingly and coping really well with this now. Seems to have overcome his 'problem' with the whole thing. When changing the bag there's a 'base plate' that goes on first. Michael has a template which was cut a while back to fit perfectly. This template is used each time a new base plate is needed. After his scope, I cut the base plate using the template but stupidly didn't put the template away immediately. We had to laugh when one of the newer nurses picked it up, and tore it apart. He had absolutely no idea that we needed it. Normally I wouldn't mention such a faux par in the blog, but as soon as he did it I did tell him I couldn't resist blogging that one (sorry!). Thankfully no harm done - and at least Michael feels confident enough with the whole thing that he could laugh as well. He does now have a new template.
They then asked us to just hang around for an hour - apparently they like you to 'rest' after this procedure. By the time we'd checked we had everything, loaded the car up and said our goodbyes, the hour was already gone. As ecstatic as we were to leave (although I'm sure Michael was much more nervous than me), it was very sad to say goodbye to such a wonderful team. I felt quite emotional because we really had been on a long journey together - from the moment we had the call and arrived at the hospital in the middle of the night, we felt that we were part of a very special caring team and all of sudden it was that bold step of leaving. On the other hand, we will be back tomorrow!!
Michael has to return tomorrow for more bloods. Basically his tac levels (tacromilus - anti rejection) are still too high - this means he has the shakes (not fantastic now that he's back to self medicating his own intravenous drugs again :)) and it also means his kidney function is not perfect. Therefore this needs to be closely monitored. It would obviously have been easier for him to stay another night but he'd already prepared himself to come home today and I don't think there was anyway I could console the kids if they came back from school to find Daddy not at home. So back we go tomorrow. They did ask if we could get there fore 8.30am - I did explain this was impossible as it would mean we'd have to leave home about 6am because of the traffic at that time. We'll aim to leave at 9am and hopefully won't have to wait too long - now he's not an inpatient we have to 'slum it' like everyone else in the clinic and just wait our turn. Then it's back again on Friday for more bloods. I know he has his weekly appointment next Thursday but I'm not sure if we'll have to return before then for any more bloods - assuming that will depend on Friday's results.
Because of the kidney function, I have been subtly giving him drinks the whole time. I know if I didn't do that he'd never pick up a glass at all. We did all sit down together for dinner tonight - he did manage two fish goujon. Whilst writing I've just realised I didn't 'offer' him the remainder of the trifle that he started when we got home this afternoon. I'm just going to have to get into the routine of constantly (and gently) reminding him of food. Funny how I when I walk into the kitchen I'm always drawn to the fridge and feel it's somehow rude not to eat something. Michael on the other hand doesn't have that weakness - think we need to trade eating habits!!
So my lovely large bed doesn't seem so large now that Michael's back home. He's just fallen asleep - which is great because I think he was worried he wouldn't be able to get comfortable. In hospital he was using our V shaped cushion which propped him up quite high as he said he felt more comfortable. When we got home I put the cushion outside for an airing - trouble is I forgot about it and now it's also had a wash. So he had to do without that and just has two pillows - is lying fairly flat and has managed to nod off. Just hoping for his sake that he does manage to sleep through the night. The great thing about this feed that he's now attached to is that it doesn't make you pee the whole time. That was a major problem with tpn - as tired as he could be, he'd always have to get up to go to the loo. It's been a long time since Michael's slept a full night sleep - so I do hope tonight will be the start.
It's been lovely having Michael back, although from the moment we arrived home, the time we spent together was different. When we were at the hospital together we had no distractions but once your home, everything changes. Before the kids came home, we tried to sort out where all the supplies should be stored. I really was against all the wheelie drawers, which I'd put in the garage some weeks ago, coming back into the bedroom as they took up so much room. Once that was sorted, kids were home, after school activities, schlepping and all too soon it was bedtime and we hadn't really spoken. Guess that's life. Have to say did feel quite rejected when the boys came home. They rang the doorbell and were fighting to get in first to see Daddy. Me? I was completely ignored.
Can't say I'm looking forward to the drive back again tomorrow. Just hoping we won't have to be there too long.
Thank you for all your lovely messages of support for Michael's 'homecoming'.
Night xx
When I arrived, the lady from the company who supplies the pump for Michael's feed was there giving detailed information about the equipment and how to use it. I had a quick catch up session. We did query a few bits of information - we had been told (not mentioning any names - but you know who you are!!!) that if the tube became clogged, putting coca cola down it often cleared any problems. We were told that soda water was better as coke tended to corrode the tube!! Lucky we asked - although coke has now been advised by two other people. Anyway compared to tpn, it's all fairly simple. Same idea, has the feed overnight but if he needs to go out, there's a little backpack for the feed to go in (a streamlined version of the large tpn bag). All sorted, and left with loads of supplies.
Next was a scope. He actually hadn't had one about 3 weeks. Guess that's good that they didn't feel the need. Anyway, a biopsy was taken and we'll wait for the results. Maybe they'll have them by the time we return on Friday? Once they've scoped, a new stoma bag has to be put on - Michael's doing amazingly and coping really well with this now. Seems to have overcome his 'problem' with the whole thing. When changing the bag there's a 'base plate' that goes on first. Michael has a template which was cut a while back to fit perfectly. This template is used each time a new base plate is needed. After his scope, I cut the base plate using the template but stupidly didn't put the template away immediately. We had to laugh when one of the newer nurses picked it up, and tore it apart. He had absolutely no idea that we needed it. Normally I wouldn't mention such a faux par in the blog, but as soon as he did it I did tell him I couldn't resist blogging that one (sorry!). Thankfully no harm done - and at least Michael feels confident enough with the whole thing that he could laugh as well. He does now have a new template.
They then asked us to just hang around for an hour - apparently they like you to 'rest' after this procedure. By the time we'd checked we had everything, loaded the car up and said our goodbyes, the hour was already gone. As ecstatic as we were to leave (although I'm sure Michael was much more nervous than me), it was very sad to say goodbye to such a wonderful team. I felt quite emotional because we really had been on a long journey together - from the moment we had the call and arrived at the hospital in the middle of the night, we felt that we were part of a very special caring team and all of sudden it was that bold step of leaving. On the other hand, we will be back tomorrow!!
Michael has to return tomorrow for more bloods. Basically his tac levels (tacromilus - anti rejection) are still too high - this means he has the shakes (not fantastic now that he's back to self medicating his own intravenous drugs again :)) and it also means his kidney function is not perfect. Therefore this needs to be closely monitored. It would obviously have been easier for him to stay another night but he'd already prepared himself to come home today and I don't think there was anyway I could console the kids if they came back from school to find Daddy not at home. So back we go tomorrow. They did ask if we could get there fore 8.30am - I did explain this was impossible as it would mean we'd have to leave home about 6am because of the traffic at that time. We'll aim to leave at 9am and hopefully won't have to wait too long - now he's not an inpatient we have to 'slum it' like everyone else in the clinic and just wait our turn. Then it's back again on Friday for more bloods. I know he has his weekly appointment next Thursday but I'm not sure if we'll have to return before then for any more bloods - assuming that will depend on Friday's results.
Because of the kidney function, I have been subtly giving him drinks the whole time. I know if I didn't do that he'd never pick up a glass at all. We did all sit down together for dinner tonight - he did manage two fish goujon. Whilst writing I've just realised I didn't 'offer' him the remainder of the trifle that he started when we got home this afternoon. I'm just going to have to get into the routine of constantly (and gently) reminding him of food. Funny how I when I walk into the kitchen I'm always drawn to the fridge and feel it's somehow rude not to eat something. Michael on the other hand doesn't have that weakness - think we need to trade eating habits!!
So my lovely large bed doesn't seem so large now that Michael's back home. He's just fallen asleep - which is great because I think he was worried he wouldn't be able to get comfortable. In hospital he was using our V shaped cushion which propped him up quite high as he said he felt more comfortable. When we got home I put the cushion outside for an airing - trouble is I forgot about it and now it's also had a wash. So he had to do without that and just has two pillows - is lying fairly flat and has managed to nod off. Just hoping for his sake that he does manage to sleep through the night. The great thing about this feed that he's now attached to is that it doesn't make you pee the whole time. That was a major problem with tpn - as tired as he could be, he'd always have to get up to go to the loo. It's been a long time since Michael's slept a full night sleep - so I do hope tonight will be the start.
It's been lovely having Michael back, although from the moment we arrived home, the time we spent together was different. When we were at the hospital together we had no distractions but once your home, everything changes. Before the kids came home, we tried to sort out where all the supplies should be stored. I really was against all the wheelie drawers, which I'd put in the garage some weeks ago, coming back into the bedroom as they took up so much room. Once that was sorted, kids were home, after school activities, schlepping and all too soon it was bedtime and we hadn't really spoken. Guess that's life. Have to say did feel quite rejected when the boys came home. They rang the doorbell and were fighting to get in first to see Daddy. Me? I was completely ignored.
Can't say I'm looking forward to the drive back again tomorrow. Just hoping we won't have to be there too long.
Thank you for all your lovely messages of support for Michael's 'homecoming'.
Night xx
5 December 2011
8 weeks and 72 hours later......
At last Michael is coming home. Seems a bit of a dream now the whole thing from our trip to the States in January to find out Michael's only option was a transplant, to Oxford, to THE call and then the last 8 weeks and 72 hours. With Michael now looking so well and being more like his old self, it's hard to imagine those awful days at the beginning, post op, sitting with him, watching him in pain and having numerous tests and set backs. Guess it's all a bit like child birth - you just quickly forget how painful (understatement!) it all is and just keep progressing and all the tough bits don't seem as bad. Although, I guess if you ask Michael, I think he may think differently. And I although I went through childbirth twice more I'm not sure Michael would ever want to go through all that again.
Thankfully, it's full steam ahead and I can only pray that his recovery keeps going as positively. All his meds and feed are ready for discharge. Only thing left is for the enteral feed nurse to give us a lesson on keeping the tubes clean and generally how to look after them. Not sure what else needs doing tomorrow but they guesstimate that we'll be ready to depart around lunchtime. Now lunchtime on the ward is usually 12noon - I'm sure we won't be ready to leave that early but you never know. We know that we'll be back once a week for blood tests and every other week he'll have a scope (camera through the stoma to check the bowel). Doing that drive only once a week will be an absolute doddle. Only query we have before he leaves is whether he needs to take one of his drugs he was taking prior to his op. He was on a calcium tablets as his bone density hasn't been amazing because of his previous steriod use (steroids are known for causing bone weakness). The pharmacist advised today that his calcium levels are fine but I didn't think it was his calcium levels that were a problem but his bone weakness. Michael will check with the doctors again tomorrow (if he remembers!).
Shame is Michael's now in the nicest room he's been in so far. He was moved on Thursday as someone else was in need of the monitor in his room. He now has a lovely bright room with a double floor to ceiling window - beautifully light, but unfortunately all that light also shows up all the dirt in the room!! Apparently there's been some sort of audit and questions being asked of patients. Michael's complaint?? The room and bathroom are not cleaned nearly enough or thoroughly. Therefore yesterday he was thrown out his room whilst his room had a deep clean. I wouldn't mind, but he made the same complaint at UCH last year and his area there also had a thorough cleaning. Think maybe I should give the house a spring clean before his return. Can see him now walking around with his clipboard and pen. Feeling a little bit nervous :)
We did have our daily trip out today - nowhere very exciting. Having struggled for the last few weeks to squeeze that wheelchair into Michael's little car, I wasn't disappointed that today was the last. When he's home, no wheelchair that's for sure - it's time to build up his energy. We'll start slowly and who knows how long it takes but eventually he'll manage to get round our whole road in one go.
I think Michael's starting his blog soon - it's a shame he wasn't up to writing earlier on because I know if I hadn't written this blog as we were going through everything, I would have forgotten an awful lot. Perhaps when he reads my blog from the last eight weeks, it may jog his memory as to what he was going through at certain times. It's been a great way of me keeping everyone informed but to be honest it's also been extremely therapeutic - bit like talking to oneself. I will continue - I have a feeling life is about to get more 'fun' and although Michael, in his usual way, is being an amazing patient, I think the next few months are going to really test us. Previously Michael has come home from hospital and slowly, day by day, has recuperated until he can return to normal life (well as normal as his life ever was with Crohn's disease). It's not quite the same after transplant - but we'll learn as go along and I think together we're a pretty strong team and we'll deal with what's thrown at us. It may actually be that at times I'll feel like throwing something at Michael but I'm sure he'll deal with that as well.
As you can imagine, the kids are so excited about tomorrow. I did tell them this morning again that we still weren't sure if everything was on track for Tuesday so they were delighted when I got home and told them it was. Lauren has already said she wants Daddy to open the door when she gets home. Lucky Waffle gets him all to himself until the kids return - the two of them can compare scars.
I really am so excited. May sound stupid but I feel like some sort of weight has been lifted. Think I may have a stupid grin on my face as I write this but his homecoming really is a big deal - it's just a shame he's not actually up to celebrating.
Well - time for bed. Early start for me so I can clean the house from top to toe.
Night xx
Thankfully, it's full steam ahead and I can only pray that his recovery keeps going as positively. All his meds and feed are ready for discharge. Only thing left is for the enteral feed nurse to give us a lesson on keeping the tubes clean and generally how to look after them. Not sure what else needs doing tomorrow but they guesstimate that we'll be ready to depart around lunchtime. Now lunchtime on the ward is usually 12noon - I'm sure we won't be ready to leave that early but you never know. We know that we'll be back once a week for blood tests and every other week he'll have a scope (camera through the stoma to check the bowel). Doing that drive only once a week will be an absolute doddle. Only query we have before he leaves is whether he needs to take one of his drugs he was taking prior to his op. He was on a calcium tablets as his bone density hasn't been amazing because of his previous steriod use (steroids are known for causing bone weakness). The pharmacist advised today that his calcium levels are fine but I didn't think it was his calcium levels that were a problem but his bone weakness. Michael will check with the doctors again tomorrow (if he remembers!).
Shame is Michael's now in the nicest room he's been in so far. He was moved on Thursday as someone else was in need of the monitor in his room. He now has a lovely bright room with a double floor to ceiling window - beautifully light, but unfortunately all that light also shows up all the dirt in the room!! Apparently there's been some sort of audit and questions being asked of patients. Michael's complaint?? The room and bathroom are not cleaned nearly enough or thoroughly. Therefore yesterday he was thrown out his room whilst his room had a deep clean. I wouldn't mind, but he made the same complaint at UCH last year and his area there also had a thorough cleaning. Think maybe I should give the house a spring clean before his return. Can see him now walking around with his clipboard and pen. Feeling a little bit nervous :)
We did have our daily trip out today - nowhere very exciting. Having struggled for the last few weeks to squeeze that wheelchair into Michael's little car, I wasn't disappointed that today was the last. When he's home, no wheelchair that's for sure - it's time to build up his energy. We'll start slowly and who knows how long it takes but eventually he'll manage to get round our whole road in one go.
I think Michael's starting his blog soon - it's a shame he wasn't up to writing earlier on because I know if I hadn't written this blog as we were going through everything, I would have forgotten an awful lot. Perhaps when he reads my blog from the last eight weeks, it may jog his memory as to what he was going through at certain times. It's been a great way of me keeping everyone informed but to be honest it's also been extremely therapeutic - bit like talking to oneself. I will continue - I have a feeling life is about to get more 'fun' and although Michael, in his usual way, is being an amazing patient, I think the next few months are going to really test us. Previously Michael has come home from hospital and slowly, day by day, has recuperated until he can return to normal life (well as normal as his life ever was with Crohn's disease). It's not quite the same after transplant - but we'll learn as go along and I think together we're a pretty strong team and we'll deal with what's thrown at us. It may actually be that at times I'll feel like throwing something at Michael but I'm sure he'll deal with that as well.
As you can imagine, the kids are so excited about tomorrow. I did tell them this morning again that we still weren't sure if everything was on track for Tuesday so they were delighted when I got home and told them it was. Lauren has already said she wants Daddy to open the door when she gets home. Lucky Waffle gets him all to himself until the kids return - the two of them can compare scars.
I really am so excited. May sound stupid but I feel like some sort of weight has been lifted. Think I may have a stupid grin on my face as I write this but his homecoming really is a big deal - it's just a shame he's not actually up to celebrating.
Well - time for bed. Early start for me so I can clean the house from top to toe.
Night xx
3 December 2011
Saturday
Thankfully I was feeling up to taking the kids to see Michael today. Still feel like a need a few weeks on a desert island - but no such luck :(
Michael looked really good today. Definitely in need of a haircut - one of the first things he'll have done when he gets home. We had a trip out to the shops today. I didn't have my car so we couldn't drive as Michael's car is only a four seater and we couldn't all fit in, as well as the wheelchair. So we all took it in turns to push Michael. It was about a 25 min walk both way but it was a lovely fresh day out so really good to get some air. We were all boiling by the time we returned (from all the pushing) and poor Michael was freezing. Well that answered a question my mum asked yesterday 'is Michael still feeling the cold as much as he was before the op?'
A few boxes of food have now been delivered to his room ready for his departure - I'm hoping everything else will also be organised in time for Tuesday.
Had to laugh - Lauren went to the fridge to get some cheese for Michael. We didn't take much notice as to how much noise she made clomping back to the room, but obviously she must have been quite loud as one of the nurses came in to tell her not to run in a hospital because it panics everyone into thinking there's an emergency. Obviously their hearing is tuned into such things whereas we don't even notice our heavy footed daughter any more!!
Kids were so happy when they said goodbye, knowing that the next time they see Daddy will be at home. Stressed again to them that as much as we want it to be Tuesday, everything may not have been sorted. I do so hope it is - please please let it all be organised.
Michael's hoping to start blogging when he's back home and has a bit more energy. I guess I'll have to let him read by blog - he hasn't read anything at all so it will be quite enlightening, and embarrassing for him no doubt!!
Hoping this time next week, Michael will be settled and we'll be relaxing together - have a feeling none of the kids will be out next Saturday evening.
It's 8 weeks since the op and it's lovely to think that he's nearly home!!
Night x
PS. Thanks so much to his Twitter friends - he was really thrilled to receive your card and good wishes. Hopefully he'll be twittering again soon.
Michael looked really good today. Definitely in need of a haircut - one of the first things he'll have done when he gets home. We had a trip out to the shops today. I didn't have my car so we couldn't drive as Michael's car is only a four seater and we couldn't all fit in, as well as the wheelchair. So we all took it in turns to push Michael. It was about a 25 min walk both way but it was a lovely fresh day out so really good to get some air. We were all boiling by the time we returned (from all the pushing) and poor Michael was freezing. Well that answered a question my mum asked yesterday 'is Michael still feeling the cold as much as he was before the op?'
A few boxes of food have now been delivered to his room ready for his departure - I'm hoping everything else will also be organised in time for Tuesday.
Had to laugh - Lauren went to the fridge to get some cheese for Michael. We didn't take much notice as to how much noise she made clomping back to the room, but obviously she must have been quite loud as one of the nurses came in to tell her not to run in a hospital because it panics everyone into thinking there's an emergency. Obviously their hearing is tuned into such things whereas we don't even notice our heavy footed daughter any more!!
Kids were so happy when they said goodbye, knowing that the next time they see Daddy will be at home. Stressed again to them that as much as we want it to be Tuesday, everything may not have been sorted. I do so hope it is - please please let it all be organised.
Michael's hoping to start blogging when he's back home and has a bit more energy. I guess I'll have to let him read by blog - he hasn't read anything at all so it will be quite enlightening, and embarrassing for him no doubt!!
Hoping this time next week, Michael will be settled and we'll be relaxing together - have a feeling none of the kids will be out next Saturday evening.
It's 8 weeks since the op and it's lovely to think that he's nearly home!!
Night x
PS. Thanks so much to his Twitter friends - he was really thrilled to receive your card and good wishes. Hopefully he'll be twittering again soon.
2 December 2011
Friday
Longest time that I haven't been to Oxford. Always planned not to be at the hospital on Wednesday and Thursday but last night I went to bed feeling quite lousy and then didn't really feel any better this morning. I managed to wake Lauren up (always taking the longest to get ready, she's up before the boys) and she then got dressed and ensured the boys got out of bed. I climbed back into bed - don't think I've ever done that but really didn't have the energy to do anything.
The kids were so sweet, all coming in before they left. They're not really used to me being the one who's unwell. Once they'd left, I was too awake to go back to sleep - just stayed in bed, with the electric blanket on, and read .... and read.... and read. Just so lovely to do absolutely nothing. Didn't really feel like food so just cups of tea for me. Then a lovely long bath and more reading. Not sure I've ever had a morning like that but honestly didn't have the energy for anything else. By the time I ventured out, it was almost lunchtime - just a walk to the shops to get some freshair for both me and Waffle. Normally I would always find something that needed doing in the house (or the garden) but today, absolutely nothing was getting done.
All too soon the kids were home - only 5 extra kids as well. Whilst writing, I'm actually hidden away in my bedroom!!! Can't hear anything too bad happening downstairs.
Michael had a rough day yesterday. Felt sicker than usual so they decided not to move his antisickness to his tube. Just one of those days, but as they explained today, if he gets one of those days at home, that's when we'd find ourselves back in Oxford. Better day today and they've have now changed the antisickness so when I speak to him later I'll find out if there was any different effect. Spoke to the Coordinator who told him she's unsure yet whether he'll be called to clinic once or twice at week initially but obviously this is all the stuff we'll find out before he comes home. Hoping we're still good for Tuessday but I get the feeling everything takes longer to organise than expected - the kids will be devastated if it's not Tuesday. As much as I stressed to them that it wasn't a definite, they've obviously been counting the days. Nothing I can do about it - we'll just see what transpires.
Meanwhile, Michael's extra sickness yesterday made me realise that it's no going to be plane sailing when he's home. I never expected it to but I guess it just highlighted the fact that there are going to be plenty of times when Michael's feeling particularly worse and we'll land up having to trek back to Oxford. Maybe the last 8 weeks have actually been the easy bit. Can't really worry about it all too much and, as always, we'll just cope. Think that part of it will perhaps be harder for the kids than what they've experienced so far :(
And more specifics on 'crowds'. Over 20 people in a room is a 'crowd' and therefore Michael's at too much risk of catching something. We can go to a indoor shopping centre but only at quiet times.
Still having problems keeping Michael's tac (tacromlimus) levels right. Keeps going up and down and at the moment he's got the shakes from it all. Nothing to panic about - some people do have this. It will just take some time to sort the levels out so he's more stable.
Hoping I'll be feeling up to to taking the kids to Oxford tomorrow.
It's already dark outside and I would be quite happy to change into my pjs and climb under the duvet. No such luck!! Roll on bedtime xx
The kids were so sweet, all coming in before they left. They're not really used to me being the one who's unwell. Once they'd left, I was too awake to go back to sleep - just stayed in bed, with the electric blanket on, and read .... and read.... and read. Just so lovely to do absolutely nothing. Didn't really feel like food so just cups of tea for me. Then a lovely long bath and more reading. Not sure I've ever had a morning like that but honestly didn't have the energy for anything else. By the time I ventured out, it was almost lunchtime - just a walk to the shops to get some freshair for both me and Waffle. Normally I would always find something that needed doing in the house (or the garden) but today, absolutely nothing was getting done.
All too soon the kids were home - only 5 extra kids as well. Whilst writing, I'm actually hidden away in my bedroom!!! Can't hear anything too bad happening downstairs.
Michael had a rough day yesterday. Felt sicker than usual so they decided not to move his antisickness to his tube. Just one of those days, but as they explained today, if he gets one of those days at home, that's when we'd find ourselves back in Oxford. Better day today and they've have now changed the antisickness so when I speak to him later I'll find out if there was any different effect. Spoke to the Coordinator who told him she's unsure yet whether he'll be called to clinic once or twice at week initially but obviously this is all the stuff we'll find out before he comes home. Hoping we're still good for Tuessday but I get the feeling everything takes longer to organise than expected - the kids will be devastated if it's not Tuesday. As much as I stressed to them that it wasn't a definite, they've obviously been counting the days. Nothing I can do about it - we'll just see what transpires.
Meanwhile, Michael's extra sickness yesterday made me realise that it's no going to be plane sailing when he's home. I never expected it to but I guess it just highlighted the fact that there are going to be plenty of times when Michael's feeling particularly worse and we'll land up having to trek back to Oxford. Maybe the last 8 weeks have actually been the easy bit. Can't really worry about it all too much and, as always, we'll just cope. Think that part of it will perhaps be harder for the kids than what they've experienced so far :(
And more specifics on 'crowds'. Over 20 people in a room is a 'crowd' and therefore Michael's at too much risk of catching something. We can go to a indoor shopping centre but only at quiet times.
Still having problems keeping Michael's tac (tacromlimus) levels right. Keeps going up and down and at the moment he's got the shakes from it all. Nothing to panic about - some people do have this. It will just take some time to sort the levels out so he's more stable.
Hoping I'll be feeling up to to taking the kids to Oxford tomorrow.
It's already dark outside and I would be quite happy to change into my pjs and climb under the duvet. No such luck!! Roll on bedtime xx
30 November 2011
Wednesday
A relatively calm day today - nothing much happening. Well, at least for Michael anyway! As the kids were off school today, I made the most of it and had a lie in to catch up on some much needed sleep.
I sneaked out of the house just at the little angels were waking to do some shopping. Naturally, the first call came in - child in panic over something completely unimportant. Dealt with that and then the next call from eldest and most responsible child was, I thought, to tell me that first child was still stropping. Oh no - nothing as simple. Nathan had managed to break his bed. Not quite sure what they thought I could do whilst do the shopping (maybe just purchase a new bed?!). Anyway, on the drive home, decided it must just been the slats that had broken on his wooden bed frame. How wrong could I have been? The whole bed had collapsed and there was no way it could be mended. Forget unpacking the shopping - I then completely dismantled the bed, putting as much as possible in the bins and the remainder will get to the Dump (together with the lovely pink exercise bike which has just died**) eventually. Nathan believed this was another reason to get his room decorated. I decided it was a good reason for him to actually give his room a good clean and hoover. We compromised and the room got a quick duster tickling and a hoover.
**Yes - Michael's lovely pink exercise bike which he started his training on for his New York bike ride, has now given up. I was happily cycling last week when the pedals lost all their resistance. I have tried to pull the thing apart and mend it but I don't think there's much hope that it will ever work again. Guess it's done a fair few miles - I have gone back to using the wii fit but the only problem with that is I can't catch up with crummy tv at the same time :(
All now sorted and Nathan has a very comfortable alternative to a bed - a comfortable mattress on the floor. He's always moaning he wants and bigger room - and now, without the bed, it does look somewhat bigger!!
Time to wash to the sheets, and time for the house to fuse again..... and again..... and again. I have now narrowed it down to which circuit has the fault and I will eventually get round to calling the Electrician. Eventually the washing did get done.
What should have been a fairly relaxing day just seemed to turn into a rushed day. Why does nothing ever goes as planned? If only Michael realised what excitement he's coming home to next week.
Michael's day was pretty much the same (not as mine, but as every other day in hospital) - except obviously no coffee shop visits. His parents kept him company so at least he wasn't on his own. He spoke with the Surgeon today - again the topic of fluids came up and the Surgeon confirmed that no bowel transplant patient could possible drink enough fluids and therefore Michael will have to put fluids into his tube (going into the intestine) over about a four hour period a day. It wasn't until the Surgeon left that Michael realised if this is on top of the 15 hours a day of feed, he's going to be connected for the majority of the day. So, another thing to query when the Surgeon comes back tomorrow. I want to say to Michael that he then needs to start eating more so that he doesn't need to be connected to the feed for so long, or at all, but I know that's just unnecessary pressure on him. If only it was as easy as me just having to eat extra for him and him gaining the weight :)
They are also taking him off his Antiemetics (anti sickness) drugs which go through his picc line. I thought they were just making him go 'cold turkey' but no - they will now go directly into his intestine via the tube. They are very concerned about infection via the picc line. When Michael had one before (as well as the hickman line) we were very careful in keeping it extremely clean and ensuring when using drugs (obviously the permitted kind!) that it was always done in an aseptic way (sterile). Thankfully he never got any infections but they just don't want to risk this as infections after transplant can be very serious. They'll be trying this new way over the next few days to check whether Michael is still getting the same benefits from the drugs. Can't wait for him to not have to use them at all.
Michael also discussed 'socialising' because of the risk of infection and catching all those horrible bugs that are always around. Basically, no crowds - any place where there are large groups of people (although what does he constitute as large?). Outside is absolutely fine - there can be thousands of people but generally germs are dispelled outside. It's inside that's the problem. Still not really sure what we can and cannot do. He's happy for us to go out and about at the moment, and obviously when we're in one of the many coffee shops around Oxford, there are other people there. How many people constitute a crowd? Obviously at lot of it is common sense and if people are unwell, sorry - we just don't want to see you. This 'antisocial' behaviour will be for about 1 year, so would be good to know a bit more about does and don'ts.
Night x
I sneaked out of the house just at the little angels were waking to do some shopping. Naturally, the first call came in - child in panic over something completely unimportant. Dealt with that and then the next call from eldest and most responsible child was, I thought, to tell me that first child was still stropping. Oh no - nothing as simple. Nathan had managed to break his bed. Not quite sure what they thought I could do whilst do the shopping (maybe just purchase a new bed?!). Anyway, on the drive home, decided it must just been the slats that had broken on his wooden bed frame. How wrong could I have been? The whole bed had collapsed and there was no way it could be mended. Forget unpacking the shopping - I then completely dismantled the bed, putting as much as possible in the bins and the remainder will get to the Dump (together with the lovely pink exercise bike which has just died**) eventually. Nathan believed this was another reason to get his room decorated. I decided it was a good reason for him to actually give his room a good clean and hoover. We compromised and the room got a quick duster tickling and a hoover.
**Yes - Michael's lovely pink exercise bike which he started his training on for his New York bike ride, has now given up. I was happily cycling last week when the pedals lost all their resistance. I have tried to pull the thing apart and mend it but I don't think there's much hope that it will ever work again. Guess it's done a fair few miles - I have gone back to using the wii fit but the only problem with that is I can't catch up with crummy tv at the same time :(
All now sorted and Nathan has a very comfortable alternative to a bed - a comfortable mattress on the floor. He's always moaning he wants and bigger room - and now, without the bed, it does look somewhat bigger!!
Time to wash to the sheets, and time for the house to fuse again..... and again..... and again. I have now narrowed it down to which circuit has the fault and I will eventually get round to calling the Electrician. Eventually the washing did get done.
What should have been a fairly relaxing day just seemed to turn into a rushed day. Why does nothing ever goes as planned? If only Michael realised what excitement he's coming home to next week.
Michael's day was pretty much the same (not as mine, but as every other day in hospital) - except obviously no coffee shop visits. His parents kept him company so at least he wasn't on his own. He spoke with the Surgeon today - again the topic of fluids came up and the Surgeon confirmed that no bowel transplant patient could possible drink enough fluids and therefore Michael will have to put fluids into his tube (going into the intestine) over about a four hour period a day. It wasn't until the Surgeon left that Michael realised if this is on top of the 15 hours a day of feed, he's going to be connected for the majority of the day. So, another thing to query when the Surgeon comes back tomorrow. I want to say to Michael that he then needs to start eating more so that he doesn't need to be connected to the feed for so long, or at all, but I know that's just unnecessary pressure on him. If only it was as easy as me just having to eat extra for him and him gaining the weight :)
They are also taking him off his Antiemetics (anti sickness) drugs which go through his picc line. I thought they were just making him go 'cold turkey' but no - they will now go directly into his intestine via the tube. They are very concerned about infection via the picc line. When Michael had one before (as well as the hickman line) we were very careful in keeping it extremely clean and ensuring when using drugs (obviously the permitted kind!) that it was always done in an aseptic way (sterile). Thankfully he never got any infections but they just don't want to risk this as infections after transplant can be very serious. They'll be trying this new way over the next few days to check whether Michael is still getting the same benefits from the drugs. Can't wait for him to not have to use them at all.
Michael also discussed 'socialising' because of the risk of infection and catching all those horrible bugs that are always around. Basically, no crowds - any place where there are large groups of people (although what does he constitute as large?). Outside is absolutely fine - there can be thousands of people but generally germs are dispelled outside. It's inside that's the problem. Still not really sure what we can and cannot do. He's happy for us to go out and about at the moment, and obviously when we're in one of the many coffee shops around Oxford, there are other people there. How many people constitute a crowd? Obviously at lot of it is common sense and if people are unwell, sorry - we just don't want to see you. This 'antisocial' behaviour will be for about 1 year, so would be good to know a bit more about does and don'ts.
Night x
29 November 2011
Tuesday
We met with the Nutritionist today to go through everything needed for discharge. There's a whole list of things to sort but we're aiming for next Tuesday - yippee!!!
Before that happens, certain things have to be done:
1. Organise the feed and equipment delivery
2. Teach us how to connect/disconnect the feed and clean the tube which goes into the intestine.
3. Organise all the drugs.
4. Get Michael to drink more.
No. 4 is the hardest of all to organise - but apparently this is quite usual for all patients. The most he's had in a day is about one glass. He really needs to have 1 litre of fluid a day. As the Nutritionist explained - most people don't drink enough but it doesn't really matter. With the tacrolimus (anti-rejection) it's imperative to drink plenty as it can affect the kidneys. So this is the task ahead for the next few days. He can put the fluids through the tube into the stomach but it would obviously be easier just to drink.
At the moment, the feed is attached for 22 hours a day - still at 80ml an hour. As of today it went up to 90ml and tomorrow it goes up to 100m. That means that the feed will only need to be attached for 15 hours a day. Ideally (well for me anyway) would be nice to get down to 12 hours, but not sure Michael has even thought about that.
At home, Michael will have to keep a food diary as well as an in/out fluid chart. The fluid chart is something that will have to be monitored for about 1 year - this indicates any changes that may need attention. The food diary is to monitor the calorie intake - once they can see Michael is eating more, the feed can be reduced and eventually removed. It will definitely be easier getting him to eat more variety when at home. It's ridiculous that the hospital food is so inedible and that there's no facilities to heat your own food up. There's very little nutritious food you can take to the hospital that's cold - apart from a sandwich. Today he did manage two latkes (just about hot using my hot water and plastic bag method) and one cold fishball. Not ideal but at least it was something other than chocolate or sweets. The one great thing about UCH was that there was a microwave. Guess you can't have everything.
We ventured further afield today (about 1 mile more) to a another little parade of shops. Did the usual walk up and down - nothing much to see and then it started to rain. Took refuge in another coffee shop and just chilled. Sure they didn't mind 'a patient' eating a fishball in their shop - he did have one of their fruit juices to go with it. Oh - and that's another thing - no grapefruits or grapefruit juice. Apparently it doesn't mix well with the tacrolimus. Other citrus fruits are all fine - just the grapefruit. If that's the only thing he has to avoid - we'll cope!
Left Michael slightly earlier today as I knew the traffic would be bad because of the weather. I was right - longest journey ever :(
No hospital for me tomorrow - strike means kids are home from school. If all goes well, I'll never have to visit him in Oxford again on a Wednesday.
xx
Before that happens, certain things have to be done:
1. Organise the feed and equipment delivery
2. Teach us how to connect/disconnect the feed and clean the tube which goes into the intestine.
3. Organise all the drugs.
4. Get Michael to drink more.
No. 4 is the hardest of all to organise - but apparently this is quite usual for all patients. The most he's had in a day is about one glass. He really needs to have 1 litre of fluid a day. As the Nutritionist explained - most people don't drink enough but it doesn't really matter. With the tacrolimus (anti-rejection) it's imperative to drink plenty as it can affect the kidneys. So this is the task ahead for the next few days. He can put the fluids through the tube into the stomach but it would obviously be easier just to drink.
At the moment, the feed is attached for 22 hours a day - still at 80ml an hour. As of today it went up to 90ml and tomorrow it goes up to 100m. That means that the feed will only need to be attached for 15 hours a day. Ideally (well for me anyway) would be nice to get down to 12 hours, but not sure Michael has even thought about that.
At home, Michael will have to keep a food diary as well as an in/out fluid chart. The fluid chart is something that will have to be monitored for about 1 year - this indicates any changes that may need attention. The food diary is to monitor the calorie intake - once they can see Michael is eating more, the feed can be reduced and eventually removed. It will definitely be easier getting him to eat more variety when at home. It's ridiculous that the hospital food is so inedible and that there's no facilities to heat your own food up. There's very little nutritious food you can take to the hospital that's cold - apart from a sandwich. Today he did manage two latkes (just about hot using my hot water and plastic bag method) and one cold fishball. Not ideal but at least it was something other than chocolate or sweets. The one great thing about UCH was that there was a microwave. Guess you can't have everything.
We ventured further afield today (about 1 mile more) to a another little parade of shops. Did the usual walk up and down - nothing much to see and then it started to rain. Took refuge in another coffee shop and just chilled. Sure they didn't mind 'a patient' eating a fishball in their shop - he did have one of their fruit juices to go with it. Oh - and that's another thing - no grapefruits or grapefruit juice. Apparently it doesn't mix well with the tacrolimus. Other citrus fruits are all fine - just the grapefruit. If that's the only thing he has to avoid - we'll cope!
Left Michael slightly earlier today as I knew the traffic would be bad because of the weather. I was right - longest journey ever :(
No hospital for me tomorrow - strike means kids are home from school. If all goes well, I'll never have to visit him in Oxford again on a Wednesday.
xx
28 November 2011
Monday evening
As someone mentioned to me yesterday, I don't really have much news in my blogs. Think I'll have to start having more of an exciting life - or maybe just invent a few thrilling stories!!
Thankfully, Michael had another good day. Todays' selection of food was Minstrels, cheese and crackers, crisps and deep fried goats cheese. Obviously not all together and definitely not large portions. Still got a taste for latkes, so that's tomorrow's treat.
The Registrars told Michael that he can go home at the end of the week but before you all say - 'that's fantastic', it's so not happening. There's a lot to organise including his feed, drugs and supplies. The Nutritionist needs to sort food and we'll wait for her confirmation as to how long this will take. And as the Surgeon originally said - 'don't listen to anyone but him and the Nutritionist'. Unfortunately, didn't see either today so no idea what their thinking is. Actually now that they've talked about home it would be nice to have a clear conversation as opposed to touching on the subject. Tomorrow will be a week since they gave him two weeks till discharge - does that still stand?
Michael's just told me that his tac levels (that's the meds he has for rejection - I think) are slightly high so dosage just been reduced. This is likely to happen over the next few months. And yes, he is now using his phone. Guess that means he must be feeling better. Texting and bbm is now working - whether he actually responds is another question but at least it means I've got some way of communicating with him when I'm not there. Quite ridiculous that I can tell he's feeling better by the usage of his mobile phone!
I apologise that I have nothing more thrilling to report. I have a feeling the fun will all begin again when Michael comes home. I'll enjoy the relative calm while it lasts.
xx
Thankfully, Michael had another good day. Todays' selection of food was Minstrels, cheese and crackers, crisps and deep fried goats cheese. Obviously not all together and definitely not large portions. Still got a taste for latkes, so that's tomorrow's treat.
The Registrars told Michael that he can go home at the end of the week but before you all say - 'that's fantastic', it's so not happening. There's a lot to organise including his feed, drugs and supplies. The Nutritionist needs to sort food and we'll wait for her confirmation as to how long this will take. And as the Surgeon originally said - 'don't listen to anyone but him and the Nutritionist'. Unfortunately, didn't see either today so no idea what their thinking is. Actually now that they've talked about home it would be nice to have a clear conversation as opposed to touching on the subject. Tomorrow will be a week since they gave him two weeks till discharge - does that still stand?
Michael's just told me that his tac levels (that's the meds he has for rejection - I think) are slightly high so dosage just been reduced. This is likely to happen over the next few months. And yes, he is now using his phone. Guess that means he must be feeling better. Texting and bbm is now working - whether he actually responds is another question but at least it means I've got some way of communicating with him when I'm not there. Quite ridiculous that I can tell he's feeling better by the usage of his mobile phone!
I apologise that I have nothing more thrilling to report. I have a feeling the fun will all begin again when Michael comes home. I'll enjoy the relative calm while it lasts.
xx
26 November 2011
Saturday Evening
How lucky am I? All the kids are out and it's just me and Waffle for the evening. Cannot remember the last time I was in the house on my own on a Saturday evening. The peace is wonderful and it's lovely not having to argue over the tv remote. We've had our evening walk and now we can settle down to doing nothing - bliss!!
Thankfully the kids were well enough to visit Michael today. He was in good spirits - my sister and brother-in-law were there when we arrived and they couldn't believe how well he looked. We had our 'picnic' lunch and I prepared Michael his mini latkes. How did I heat them you may ask. Well - take a plastic bag, a flask full of hot water, wrap the latke in the bag tightly and leave in the hot water until warm. Job done - and he managed to eat two which was amazing. I have to admit, a microwave would have been easier (but heavier to transport).
I didn't fancy coping with the Christmas shopping traffic so we didn't venture too far. Michael wrapped up warm and the kids took it in turns to push the wheelchair around the hospital grounds. They thoroughly enjoyed themselves - who needs theme parks?!?!
Back at the room Michael managed to eat 3/4 of a trifle and some more cheese & crackers. Still not convinced he's actually enjoying the food as opposed to just eating it. I know the Nutritionist said this is a new start and forget what's happened in the past but I can't help think he's never going to actually enjoy food but rather just eat it cause he has to. I hope I'm proved wrong. Meanwhile, the nurse told him he's not peeing enough and needs to drink more. If he doesn't, they'll have to connect him up to a drip. He says he can't drink that much more and is happy to just accept the drip. My thinking is, why have a drip connected when you can drink. But no, Michael doesn't see it that way and says he just can't drink that much. This is so frustrating - exactly the same as previous ops he's ever had - I could scream. Don't get me wrong - he's doing fantastically but.......
Surgeon popped his head round today. Think it was just a courtesy call as I assume he must have been on his way home to bed, having operated in the early hours and looking the most tired I have ever seen him. Apparently they are changing the antibiotics Michael is on. These are for transplant patients to stop PCP (which I believe is something everybody has and the antibiotics keep it dormant?). The only problem is, it's lowering Michael's white blood count too much. They've taken him off them, and all has been ok but as soon as he's back on, they lower again. So they are going to change this to another antibiotic. This is something he will be on for about 1 year. Only other important issue we had time to discuss was where you could purchase the best chips!!!
All too soon, it was time to leave again.
Well I'm off to watch rubbish tv - all on my own.
xx
Thankfully the kids were well enough to visit Michael today. He was in good spirits - my sister and brother-in-law were there when we arrived and they couldn't believe how well he looked. We had our 'picnic' lunch and I prepared Michael his mini latkes. How did I heat them you may ask. Well - take a plastic bag, a flask full of hot water, wrap the latke in the bag tightly and leave in the hot water until warm. Job done - and he managed to eat two which was amazing. I have to admit, a microwave would have been easier (but heavier to transport).
I didn't fancy coping with the Christmas shopping traffic so we didn't venture too far. Michael wrapped up warm and the kids took it in turns to push the wheelchair around the hospital grounds. They thoroughly enjoyed themselves - who needs theme parks?!?!
Back at the room Michael managed to eat 3/4 of a trifle and some more cheese & crackers. Still not convinced he's actually enjoying the food as opposed to just eating it. I know the Nutritionist said this is a new start and forget what's happened in the past but I can't help think he's never going to actually enjoy food but rather just eat it cause he has to. I hope I'm proved wrong. Meanwhile, the nurse told him he's not peeing enough and needs to drink more. If he doesn't, they'll have to connect him up to a drip. He says he can't drink that much more and is happy to just accept the drip. My thinking is, why have a drip connected when you can drink. But no, Michael doesn't see it that way and says he just can't drink that much. This is so frustrating - exactly the same as previous ops he's ever had - I could scream. Don't get me wrong - he's doing fantastically but.......
Surgeon popped his head round today. Think it was just a courtesy call as I assume he must have been on his way home to bed, having operated in the early hours and looking the most tired I have ever seen him. Apparently they are changing the antibiotics Michael is on. These are for transplant patients to stop PCP (which I believe is something everybody has and the antibiotics keep it dormant?). The only problem is, it's lowering Michael's white blood count too much. They've taken him off them, and all has been ok but as soon as he's back on, they lower again. So they are going to change this to another antibiotic. This is something he will be on for about 1 year. Only other important issue we had time to discuss was where you could purchase the best chips!!!
All too soon, it was time to leave again.
Well I'm off to watch rubbish tv - all on my own.
xx
25 November 2011
Friday
It's so refreshing not to have to blog any major changes on a daily basis. Michael is just doing really well and his strength seems to be slowly building.
I hadn't seen Michael since Tuesday. Lauren's cough and cold got the better of her and she had a 'mummy day' on Wednesday. We just had a lazy day - she must have needed it as has been much happier ever since (and a happy daughter makes a happy mummy!). Thursday I didn't go to the hospital either, so it was lovely to see him this morning, freshly shaved and smiling. I realise he's got a long way to go, but he really is like his old self - happy to talk (whereas a short while ago, he barely listened) and just interested in what's going on in the World, and of course Radlett!!
Before our walk, I had to sample some of the delights sitting there - no will power whatsoever. I was so impressed that he actually wanted to do two laps of the corridor - amazing improvement.
He then mastered cleaning and changing his stoma himself. The Stoma Nurse had last come in on Tuesday and he was hoping that he would come again yesterday. As not, he decided to brave it himself. All managed quite successfully - definitely getting over his struggles with the whole stoma thing. Maybe the nurses don't come that often as a way of encouraging the patients to deal with it themselves (or maybe not!!).
The Surgeon popped in but purely to ensure that we were having our daily trip out. I had googled to see if there was Oxford's version of Brent Cross nearby but the only place I could find was in the City Centre and I didn't fancy struggling to find somewhere to park. So we headed for our usual haunt - Headington. I have never known a parade of shops to have soooo many charity shops. Anyway, we cruised along the pavements - today's wheelchair seemed to veer towards the right and at one point I think Michael thought he was going to land up in the road - thankfully not. As always finished off in Starbucks - they're really not going to make much from us. One coffee for me whilst Michael devoured a slice of Aaron's jam & cream swiss roll (happy that he ate it all but quite disappointed there was nothing for me to finish off!!) and then nibbled on some crisps (sorry Starbucks they weren't purchased in store either).
These trips out are great. Michael does always pull a face when he realises we are going out - and makes out to the nurses that I'm such a bully, but I do believe he actually enjoys being out of the hospital. Today I did make him walk from the room, along the corridor, down the lift and to the car - he managed. I guess I am a bully (a nice one I'd like to think) but now it really is a time for building up his energy for home. There'll be no wheelchair there so the more he can walk, the better.
Also the time we spend now is no doubt more than we will when he does come home. As much as I have managed to keep everything in order whilst he's been in hospital, I know that once he's home, I won't be sitting with him on a daily basis, watching tv together and walking the hallway - I'll be doing 'stuff' and I'll slot back into the usual routine of life. It's just what happens - so I guess we should enjoy our 'quality time' together. Of course, I'll be there to help him - always, but the amount of time we spend sitting, talking or just sitting at the moment just wouldn't happen when he's home. On the other hand perhaps life is somewhat protected for both of us when he's in hospital and I'm visiting - suppose it's secure for both of us knowing there's always Doctors and Nurses around. I can't though think of a time in the last few days when we've actually needed to call the nurse for any sort of query or help but perhaps knowing they are there all the time is comforting in itself. Once Michael's home, we don't know how either of us are going to feel. Michael seems much stronger and improving each day but once we're home maybe having the 'protection' removed will change things a little. Also, at the moment the nurses deal with all his meds and back home, it's all up to us!
Guess I'm rambling on and in time we'll see for ourselves how we cope with it all. Meanwhile, I'm thrilled to have another day when I can tell you 'he's doing really well'.
xx
I hadn't seen Michael since Tuesday. Lauren's cough and cold got the better of her and she had a 'mummy day' on Wednesday. We just had a lazy day - she must have needed it as has been much happier ever since (and a happy daughter makes a happy mummy!). Thursday I didn't go to the hospital either, so it was lovely to see him this morning, freshly shaved and smiling. I realise he's got a long way to go, but he really is like his old self - happy to talk (whereas a short while ago, he barely listened) and just interested in what's going on in the World, and of course Radlett!!
Before our walk, I had to sample some of the delights sitting there - no will power whatsoever. I was so impressed that he actually wanted to do two laps of the corridor - amazing improvement.
He then mastered cleaning and changing his stoma himself. The Stoma Nurse had last come in on Tuesday and he was hoping that he would come again yesterday. As not, he decided to brave it himself. All managed quite successfully - definitely getting over his struggles with the whole stoma thing. Maybe the nurses don't come that often as a way of encouraging the patients to deal with it themselves (or maybe not!!).
The Surgeon popped in but purely to ensure that we were having our daily trip out. I had googled to see if there was Oxford's version of Brent Cross nearby but the only place I could find was in the City Centre and I didn't fancy struggling to find somewhere to park. So we headed for our usual haunt - Headington. I have never known a parade of shops to have soooo many charity shops. Anyway, we cruised along the pavements - today's wheelchair seemed to veer towards the right and at one point I think Michael thought he was going to land up in the road - thankfully not. As always finished off in Starbucks - they're really not going to make much from us. One coffee for me whilst Michael devoured a slice of Aaron's jam & cream swiss roll (happy that he ate it all but quite disappointed there was nothing for me to finish off!!) and then nibbled on some crisps (sorry Starbucks they weren't purchased in store either).
These trips out are great. Michael does always pull a face when he realises we are going out - and makes out to the nurses that I'm such a bully, but I do believe he actually enjoys being out of the hospital. Today I did make him walk from the room, along the corridor, down the lift and to the car - he managed. I guess I am a bully (a nice one I'd like to think) but now it really is a time for building up his energy for home. There'll be no wheelchair there so the more he can walk, the better.
Also the time we spend now is no doubt more than we will when he does come home. As much as I have managed to keep everything in order whilst he's been in hospital, I know that once he's home, I won't be sitting with him on a daily basis, watching tv together and walking the hallway - I'll be doing 'stuff' and I'll slot back into the usual routine of life. It's just what happens - so I guess we should enjoy our 'quality time' together. Of course, I'll be there to help him - always, but the amount of time we spend sitting, talking or just sitting at the moment just wouldn't happen when he's home. On the other hand perhaps life is somewhat protected for both of us when he's in hospital and I'm visiting - suppose it's secure for both of us knowing there's always Doctors and Nurses around. I can't though think of a time in the last few days when we've actually needed to call the nurse for any sort of query or help but perhaps knowing they are there all the time is comforting in itself. Once Michael's home, we don't know how either of us are going to feel. Michael seems much stronger and improving each day but once we're home maybe having the 'protection' removed will change things a little. Also, at the moment the nurses deal with all his meds and back home, it's all up to us!
Guess I'm rambling on and in time we'll see for ourselves how we cope with it all. Meanwhile, I'm thrilled to have another day when I can tell you 'he's doing really well'.
xx
22 November 2011
Tuesday
Oh the joys of children. Last night, just as I was about to flop into bed, discovered Nathan had put one of his most exciting Bar Mitzvah presents in the wash with his jeans. Two tickets to the International Horse Show. OMG you should have seen his face. We managed to pull the wet pile apart and just about had two tickets, but completely unusable. Phoned Olympia this morning and explained my sad tale - all now sorted.
Then today started with a struggle to get all three of them off to school. Without giving away who caused the problem, let's just say through the coughing, spluttering and moaning someone was far from happy about having to go to school. Would have been so easy to put said child back to bed but I knew Michael was expecting me - talk about being pulled in all directions!! Anyway, eventually all left and my usual routine commenced.
Found Michael in good spirits when I arrived. He'd already had two walks up and down the corridor. Today's little food gift was Minstrels - good choice and he started nibbling straight away. That freed up yesterday's Cadburys Buttons for me. Apparently the Reg had been round and they've discussed discharge from hospital in two weeks if everything keeps on going as well as it is. Exciting and quite scary - although definitely more scary for Michael than me. That's why the Surgeon is so keen for us to keep going out - just so Michael can start adjusting to life 'outside'. Michael was not keen to repeat yesterday's trip out and thought that perhaps we'd just visit the roof garden. The Surgeon then popped in and asked if we were going out (and only wanted a 'yes' in response) and that was my chance to jump in and say yes. Guess Michael was resigned to the fact that we were going out again.
We did the same as yesterday and waiting for his anti sickness drugs. They then disconnected him from his feed and also his drip (on fluids today as his anti-rejection levels are a bit too high which affects the kidneys and therefore more fluid is needed. Nothing to be concerned over - the levels are monitored every day and could be higher as bowel starting to absorb more). Change of shops today - Waitrose first. Thought by having a stroll along the aisles may tempt him with something. I was trying to be very subtle but failed miserably - he knew what I was up to. We then strolled (actually he relaxed in the wheelchair and I did my weight lifting practice) along the shops and then stopped for a drink. Shame it's not summer - it's hard to constantly push him so it means spending the time at coffee shops. Meanwhile, it's just nice not to be the patient and visitor for a couple of hours - we talk about the same things but it makes a big difference not being in the hospital room. All too soon it was time to return - Michael even walked from the car all the way back to the room. In a few days I think I'll get him to push me back in the wheelchair.
Fresh air must have made him hungry - managed two small crackers and cheddar cheese. First savoury food he's tried - and he really enjoyed it.
So it's all looking rather positive. Told the kids that Daddy may be home in as little as two weeks and they were so excited. Could my daily drive to Oxford soon come to an end? I really do hope so - things are looking up.
xx
Then today started with a struggle to get all three of them off to school. Without giving away who caused the problem, let's just say through the coughing, spluttering and moaning someone was far from happy about having to go to school. Would have been so easy to put said child back to bed but I knew Michael was expecting me - talk about being pulled in all directions!! Anyway, eventually all left and my usual routine commenced.
Found Michael in good spirits when I arrived. He'd already had two walks up and down the corridor. Today's little food gift was Minstrels - good choice and he started nibbling straight away. That freed up yesterday's Cadburys Buttons for me. Apparently the Reg had been round and they've discussed discharge from hospital in two weeks if everything keeps on going as well as it is. Exciting and quite scary - although definitely more scary for Michael than me. That's why the Surgeon is so keen for us to keep going out - just so Michael can start adjusting to life 'outside'. Michael was not keen to repeat yesterday's trip out and thought that perhaps we'd just visit the roof garden. The Surgeon then popped in and asked if we were going out (and only wanted a 'yes' in response) and that was my chance to jump in and say yes. Guess Michael was resigned to the fact that we were going out again.
We did the same as yesterday and waiting for his anti sickness drugs. They then disconnected him from his feed and also his drip (on fluids today as his anti-rejection levels are a bit too high which affects the kidneys and therefore more fluid is needed. Nothing to be concerned over - the levels are monitored every day and could be higher as bowel starting to absorb more). Change of shops today - Waitrose first. Thought by having a stroll along the aisles may tempt him with something. I was trying to be very subtle but failed miserably - he knew what I was up to. We then strolled (actually he relaxed in the wheelchair and I did my weight lifting practice) along the shops and then stopped for a drink. Shame it's not summer - it's hard to constantly push him so it means spending the time at coffee shops. Meanwhile, it's just nice not to be the patient and visitor for a couple of hours - we talk about the same things but it makes a big difference not being in the hospital room. All too soon it was time to return - Michael even walked from the car all the way back to the room. In a few days I think I'll get him to push me back in the wheelchair.
Fresh air must have made him hungry - managed two small crackers and cheddar cheese. First savoury food he's tried - and he really enjoyed it.
So it's all looking rather positive. Told the kids that Daddy may be home in as little as two weeks and they were so excited. Could my daily drive to Oxford soon come to an end? I really do hope so - things are looking up.
xx
21 November 2011
Monday Evening
So we made it to Headington. Michael's face was a picture when the Surgeon came in this morning and thought we were going to Oxford City Centre. Think that was stretching the idea somewhat. The local shops were just fine as a starting point. Once I'd managed to squeeze the wheelchair into Michael's car, we set off. Sure Michael's shivers were more from nerves than cold.
Our adventure started at the Post Office. Definitely the longest queue I have ever experienced at any Post Office. One man had a pile of (I assume) Xmas cards, each one being weighed individually!! Next stop was Boots as our thermostat has just broken, together with some intensive foot cream for 'those feet'.
The whole experience was quite comical. Pushing him along the corridors of the hospital is a doddle. He was much more of a weight on the pavements and all the pavements seemed to slant towards the road and were extremely bumpy. I tried my hardest to give him a smooth ride - but it was not easy. At one point I struggled to get over the shop threshold and we did laugh how funny it would be if he just stood up and walked across and then sat back down again. Bit like that sketch from Little Britain - although Michael was definitely better dressed than the character Andy (apart from his Crocs as I forgot to bring him shoes up!!) and please, no comparisons to Lou thank you very much!!!!!
We then chilled in Starbucks. He even managed half a calorie laden millionaires shortbread (and more to the point, I managed not to finish it!). I was actually surprised at how long we managed to sit and talk without him worrying about returning. We didn't get back till just after 3pm - nearly out for two hours. Had such a nice time (I'm obviously easily pleased) and I think it definitely gave Michael a taster of life 'outside'.
Back at the hospital, the Stoma Nurse came and gave Michael another lesson on cleaning and changing. Michael did amazingly. Don't get me wrong - he's not jumping for joy about it, but he's dealing with it.
Hopefully we'll have another little trip tomorrow - just hoping my coughing, spluttering daughter gets off to school in the morning......
Our adventure started at the Post Office. Definitely the longest queue I have ever experienced at any Post Office. One man had a pile of (I assume) Xmas cards, each one being weighed individually!! Next stop was Boots as our thermostat has just broken, together with some intensive foot cream for 'those feet'.
The whole experience was quite comical. Pushing him along the corridors of the hospital is a doddle. He was much more of a weight on the pavements and all the pavements seemed to slant towards the road and were extremely bumpy. I tried my hardest to give him a smooth ride - but it was not easy. At one point I struggled to get over the shop threshold and we did laugh how funny it would be if he just stood up and walked across and then sat back down again. Bit like that sketch from Little Britain - although Michael was definitely better dressed than the character Andy (apart from his Crocs as I forgot to bring him shoes up!!) and please, no comparisons to Lou thank you very much!!!!!
We then chilled in Starbucks. He even managed half a calorie laden millionaires shortbread (and more to the point, I managed not to finish it!). I was actually surprised at how long we managed to sit and talk without him worrying about returning. We didn't get back till just after 3pm - nearly out for two hours. Had such a nice time (I'm obviously easily pleased) and I think it definitely gave Michael a taster of life 'outside'.
Back at the hospital, the Stoma Nurse came and gave Michael another lesson on cleaning and changing. Michael did amazingly. Don't get me wrong - he's not jumping for joy about it, but he's dealing with it.
Hopefully we'll have another little trip tomorrow - just hoping my coughing, spluttering daughter gets off to school in the morning......
Monday morning
Good journey today - even with the fog!!
Michael's so excited about going out today..... not. When I arrived, he hadn't even washed - all delaying tactics that won't work with me. He's decided to wait for his next lot of anti-sickness and then off we go.
He didn't have too bad a night and says he now gets at least two hours solid sleep. Looks pretty good on so little - I find it hard to cope on 7 hours. Last night was horrendous - we had two power surges which both set the house alarm off and then, naturally, I couldn't get back to sleep. Definitely more caffeine today.
Surgical team and pain team have both been round today. Nothing much to add. His patches r going down tomorrow to 25mg and they are stopping his lunchtime diazapan. Unfortunately no miracle answer about the sickness :(
Now waiting for the next text from Lauren, who now says she's not well. Her hacking cough turned into a bad cold and she spent most of yesterday morning in bed. Thought it was too good to be true when she happily went off the school this morning!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Michael's so excited about going out today..... not. When I arrived, he hadn't even washed - all delaying tactics that won't work with me. He's decided to wait for his next lot of anti-sickness and then off we go.
He didn't have too bad a night and says he now gets at least two hours solid sleep. Looks pretty good on so little - I find it hard to cope on 7 hours. Last night was horrendous - we had two power surges which both set the house alarm off and then, naturally, I couldn't get back to sleep. Definitely more caffeine today.
Surgical team and pain team have both been round today. Nothing much to add. His patches r going down tomorrow to 25mg and they are stopping his lunchtime diazapan. Unfortunately no miracle answer about the sickness :(
Now waiting for the next text from Lauren, who now says she's not well. Her hacking cough turned into a bad cold and she spent most of yesterday morning in bed. Thought it was too good to be true when she happily went off the school this morning!
Justine
read my blog:www.the-transplant-wife.blogspot.com
19 November 2011
Saturday
Today things really didn't go as planned. Yesterday I had to tell Lauren she was unable to go and see Daddy because of her hacking cough. She was very mature about it and understood that she really didn't want to give him her germs. The question was should I take the boys and arrange for her to be with a friend, or spend the day with Lauren and arrange for someone else to take the boys and spend the day with her. As she was so mature about it all, I arranged for her to go to a good friend.
Just as we were leaving today, Aaron was already in the car, I realised from the revolting sniff that Nathan gave, that he too had germs that he shouldn't be spreading. He was obviously devastated but there was nothing I could do. So thankfully another friend came to the rescue and Nathan was entertained for the afternoon.
Michael was fairly good today. Aaron noticed the remarkable improvement from last week. He wasn't as good as yesterday - still good but just a slightly more uncomfortable day with the sickness. Said he'd just been feeling sick all the day and the antiemetics (anti sickness) were having little effect. We saw the Surgeon who was still very positive about Michael's continued progress and also said that few patients manage to come out of hospital from bowel surgery without antiemetics (that's fine, as long as they are perhaps reduced!!).
We took Michael again to the roof garden - little bit colder than yesterday but still lovely to get some fresh air (obviously more so for Michael as I get some every day). Aaron had great fun pushing him in the wheelchair (amazing what pleases some kids!!) We also went to the cafe where we encouraged him to choose a different flavour packet of crisps. I can't tell you how much I have to fight the urge to keep offering food to him.
Guess we were only out of the room for about 40 mins - but I think it's really important to get away from that room and bed. The Surgeon has said this week we should go out every day and by go out he means out of the hospital grounds. Michael didn't seem too sure but I've said we'll go in the car to Headington and then I can push him around the shops in the wheelchair. I know he feels it's too much but when he comes home we've got an hour car journey, so this will be a doddle. Can see that the Surgeon sees the benefit of getting out of the hospital environment. I'm quite looking forward to it, even though I know Michael's not going to be smiling as much as I am on Monday.
Just as we were leaving today, Aaron was already in the car, I realised from the revolting sniff that Nathan gave, that he too had germs that he shouldn't be spreading. He was obviously devastated but there was nothing I could do. So thankfully another friend came to the rescue and Nathan was entertained for the afternoon.
Michael was fairly good today. Aaron noticed the remarkable improvement from last week. He wasn't as good as yesterday - still good but just a slightly more uncomfortable day with the sickness. Said he'd just been feeling sick all the day and the antiemetics (anti sickness) were having little effect. We saw the Surgeon who was still very positive about Michael's continued progress and also said that few patients manage to come out of hospital from bowel surgery without antiemetics (that's fine, as long as they are perhaps reduced!!).
We took Michael again to the roof garden - little bit colder than yesterday but still lovely to get some fresh air (obviously more so for Michael as I get some every day). Aaron had great fun pushing him in the wheelchair (amazing what pleases some kids!!) We also went to the cafe where we encouraged him to choose a different flavour packet of crisps. I can't tell you how much I have to fight the urge to keep offering food to him.
Guess we were only out of the room for about 40 mins - but I think it's really important to get away from that room and bed. The Surgeon has said this week we should go out every day and by go out he means out of the hospital grounds. Michael didn't seem too sure but I've said we'll go in the car to Headington and then I can push him around the shops in the wheelchair. I know he feels it's too much but when he comes home we've got an hour car journey, so this will be a doddle. Can see that the Surgeon sees the benefit of getting out of the hospital environment. I'm quite looking forward to it, even though I know Michael's not going to be smiling as much as I am on Monday.
18 November 2011
Friday
It's so nice to be able to blog without using big medical words explaining what the day's problems are. He really is making great progress.
When I arrived, the TV was on (which is the first time ever - normally he's just been sitting then staring into space or sleeping) and we had a good old natter and caught up on the last two days. Really is the best he's been - so fantastic to see.
The Pain Relief Team came in. The Dr was thrilled how Michael's reduced his opiates. He came into hospital on such a high dosage and they are really impressed on how he's managed to reduce them. He's now on fentanyl patches (going down to 37mg tomorrow) and a small amount of diazapan. He is written up for oramorph for as and when but has never used it. I just look forward to the time when he can also reduce his sickness meds.
Today, his feed went up to 80ml per hour (Michael was none to pleased) and that is the maximum now that it will go to. Not quite sure why it doesn't go any higher but I haven't seen the Nutritionist so will ask next week. She would like him to eat say a kit kat a day (at least) which is about 200 calories (4 sticks). Today he had some crisps and a bit of strawberry mousse. They reckon he'll be on the feed for about 6 months - I think that's because it's unlikely he'll be able to build up his calorie intake that quickly and this will sustain him (with some food). Michael's always been an appalling eater and I did mention this when I last saw N, wondering whether he'd follow the same unhealthy path. She clearly told me to forget what had happened in the past - this was a new start. Maybe at last he'll also eat brown bread and vegetables. Ever since I've known Michael he has had a very limited, generally unhealthy diet - the more chocolate and sweets, as far as he was concerned, the better. The kids always knew the white bread was for Dad and Dad wasn't allowed to eat vegetables because they irritated his stomach. So now Nathan won't feel alone when I 'encourage' Michael to finish his broccoli!!
It's just so hard at the moment to know what to take him up, that's not nosh, but that he'll be interested in. I just don't want to feel like he's being pressured into anything so will just have to take it step by step. I've got so many queries when I see N next week.
Stoma Nurse came round and is now giving Michael lessons on how to deal with it himself. So far, so good - dealing with it all really well.
Michael wrapped up warm, woolly hat and all, and I wheeled him upstairs to the roof garden. Lovely dry day and it was great to be outside. First time in six weeks for him!!! We then had a quick whiz round the hospital - just for something different to do. So good to be out of that room.
Also squeezed a hairwash in and a corridor walk.
So great to see such progression this week. It's now exactly six weeks since that phone call - talk about ups and downs, and I know there's loads more to come but meanwhile it's fab to see him come out the other side of this horrible virus.
Keeping going Michael.
Night x
When I arrived, the TV was on (which is the first time ever - normally he's just been sitting then staring into space or sleeping) and we had a good old natter and caught up on the last two days. Really is the best he's been - so fantastic to see.
The Pain Relief Team came in. The Dr was thrilled how Michael's reduced his opiates. He came into hospital on such a high dosage and they are really impressed on how he's managed to reduce them. He's now on fentanyl patches (going down to 37mg tomorrow) and a small amount of diazapan. He is written up for oramorph for as and when but has never used it. I just look forward to the time when he can also reduce his sickness meds.
Today, his feed went up to 80ml per hour (Michael was none to pleased) and that is the maximum now that it will go to. Not quite sure why it doesn't go any higher but I haven't seen the Nutritionist so will ask next week. She would like him to eat say a kit kat a day (at least) which is about 200 calories (4 sticks). Today he had some crisps and a bit of strawberry mousse. They reckon he'll be on the feed for about 6 months - I think that's because it's unlikely he'll be able to build up his calorie intake that quickly and this will sustain him (with some food). Michael's always been an appalling eater and I did mention this when I last saw N, wondering whether he'd follow the same unhealthy path. She clearly told me to forget what had happened in the past - this was a new start. Maybe at last he'll also eat brown bread and vegetables. Ever since I've known Michael he has had a very limited, generally unhealthy diet - the more chocolate and sweets, as far as he was concerned, the better. The kids always knew the white bread was for Dad and Dad wasn't allowed to eat vegetables because they irritated his stomach. So now Nathan won't feel alone when I 'encourage' Michael to finish his broccoli!!
It's just so hard at the moment to know what to take him up, that's not nosh, but that he'll be interested in. I just don't want to feel like he's being pressured into anything so will just have to take it step by step. I've got so many queries when I see N next week.
Stoma Nurse came round and is now giving Michael lessons on how to deal with it himself. So far, so good - dealing with it all really well.
Michael wrapped up warm, woolly hat and all, and I wheeled him upstairs to the roof garden. Lovely dry day and it was great to be outside. First time in six weeks for him!!! We then had a quick whiz round the hospital - just for something different to do. So good to be out of that room.
Also squeezed a hairwash in and a corridor walk.
So great to see such progression this week. It's now exactly six weeks since that phone call - talk about ups and downs, and I know there's loads more to come but meanwhile it's fab to see him come out the other side of this horrible virus.
Keeping going Michael.
Night x
16 November 2011
Wednesday
When I last saw Michael yesterday, he was pretty comfortable and feeling a little more positive. Today, he's had an ok day - still a little bit of sickness which isn't even related to eating anything but thank goodness still no temperature.
I'm just getting more and more tired, and the early nights just don't seem to happen. Today was a catch up on things day but I was on go slow and it didn't help that when I arrived at Harlequin, I'd forgotten my wallet. None too pleased I can tell you. Only good thing was getting a parking space on the first floor second time round rather than the 4th!!!
The kids are great and seem happy enough with their once a week visit. We've slotted into our routine of kids off to school, me off to hospital, kids come home, me come home, eat, sleep. Obviously they have homework in between and I have the usual house chores. The last few weeks I've also had the joys of a 'teenage' daughter to deal with - a real journey of discovery. Thinking of writing a new blog - 'www.sureiwasnotlikethat@blogspot.com'!!!
For the first time, I'm having two 'days off' in a row. Tomorrow we're looking at another sixth form (how aging is that? Sure I only left school about 10 years ago?!?!?).
Looking forward to another outing with Michael on Friday - if dry, think I'll get him to wrap up warm and we'll get some fresh air. Apparently there's a roof top garden somewhere - we'll go exploring!!
Now off to watch some very cute polar bears.
Night x
I'm just getting more and more tired, and the early nights just don't seem to happen. Today was a catch up on things day but I was on go slow and it didn't help that when I arrived at Harlequin, I'd forgotten my wallet. None too pleased I can tell you. Only good thing was getting a parking space on the first floor second time round rather than the 4th!!!
The kids are great and seem happy enough with their once a week visit. We've slotted into our routine of kids off to school, me off to hospital, kids come home, me come home, eat, sleep. Obviously they have homework in between and I have the usual house chores. The last few weeks I've also had the joys of a 'teenage' daughter to deal with - a real journey of discovery. Thinking of writing a new blog - 'www.sureiwasnotlikethat@blogspot.com'!!!
For the first time, I'm having two 'days off' in a row. Tomorrow we're looking at another sixth form (how aging is that? Sure I only left school about 10 years ago?!?!?).
Looking forward to another outing with Michael on Friday - if dry, think I'll get him to wrap up warm and we'll get some fresh air. Apparently there's a roof top garden somewhere - we'll go exploring!!
Now off to watch some very cute polar bears.
Night x
15 November 2011
Tuesday - 2.10 pm
Michael's just nodded off so I can carry on blogging.
So the crisps was an amazing achievement, and prior to that he even had a nibble of a cheese slice). We spoke to the Nutritionist this morning and it's agreed that the feed is going up to 70ml today and if all goes well, 80ml on Friday. Michael's not thrilled, especially as she'd told him the machine only moves up in 10 ml units and now he's discovered it moves in 1ml units and it's her that has decided to move in 10ml!! She has also given him a two hour break from the feed each day.
Hasn't been sick and I look forward to the day when he may not need anti-sickness drugs. How amazing would that be if he didn't have to inject himself with anything? Tablets is one thing but to be injection free would be amazing. Think I'm getting a bit carried away but nice to even be thinking about progression now.
Apparently Michael spoke with the Coordinator today. They are putting together Michael's exit package (not a wrapped present or anything!) from hospital - obviously not right now but maybe as soon as the end of the month. All of a sudden things seem to be moving quickly and this is all quite encouraging news. We'll be given the dos and don'ts and things to look out for, etc, and it's likely we'll be back here once a week - but one day a week would be an improvement on my journeys now. More I think about it, the more I see no reason for him to go to the flat but we'll just see how things progress. For now, it's nice to think he could be home before the end of the year.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
So the crisps was an amazing achievement, and prior to that he even had a nibble of a cheese slice). We spoke to the Nutritionist this morning and it's agreed that the feed is going up to 70ml today and if all goes well, 80ml on Friday. Michael's not thrilled, especially as she'd told him the machine only moves up in 10 ml units and now he's discovered it moves in 1ml units and it's her that has decided to move in 10ml!! She has also given him a two hour break from the feed each day.
Hasn't been sick and I look forward to the day when he may not need anti-sickness drugs. How amazing would that be if he didn't have to inject himself with anything? Tablets is one thing but to be injection free would be amazing. Think I'm getting a bit carried away but nice to even be thinking about progression now.
Apparently Michael spoke with the Coordinator today. They are putting together Michael's exit package (not a wrapped present or anything!) from hospital - obviously not right now but maybe as soon as the end of the month. All of a sudden things seem to be moving quickly and this is all quite encouraging news. We'll be given the dos and don'ts and things to look out for, etc, and it's likely we'll be back here once a week - but one day a week would be an improvement on my journeys now. More I think about it, the more I see no reason for him to go to the flat but we'll just see how things progress. For now, it's nice to think he could be home before the end of the year.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Tuesday
Got my early night - unfortunately didn't get much extra sleep. Lauren has managed to pick up a terrible cough and kept us both up for a good couple of hours. I'll try again tonight!!
Guilty parent this morning as she said she didn't want to go to school but as far as I was concerned, no temperature meant no day off. It wasn't an easy feat sending her on her way and for the first time since she started secondary school, the boys left without her. Although they were excellent spies, letting me know when she eventually made it to the bus stop. So far, no call from school so I'm guessing she's forgotten how 'ill' she felt this morning!!! Do feel awful - if it wasn't for Michael, I may well have let her go back to sleep (but don't tell her that).
Kept thinking on the drive here 'hope he's still doing well' and thankfully he is. We've just come back from a zoom around the hospital. Took a pit stop in WHsmiths, trying to tempt him with some food/nosh. Opted for choc buttons, but while I left him sitting there to draw some money out, obviously being surrounded by all that nosh got his tastebuds goings and he then went for a bar of choc and crisps. Then went to the Cafe to get a coffee. Bit concerned as very busy (it was lunchtime) and worried about all those nasty germs but we found a quiet spot. Great to be out and without even realising it, while we were talking, Michael had eaten half a packet of crisps. Fantastic! Think this will have to be a regular daily trip out - definitely a better way to get him to eat rather than sitting in bed with people trying to tempt him with food.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Guilty parent this morning as she said she didn't want to go to school but as far as I was concerned, no temperature meant no day off. It wasn't an easy feat sending her on her way and for the first time since she started secondary school, the boys left without her. Although they were excellent spies, letting me know when she eventually made it to the bus stop. So far, no call from school so I'm guessing she's forgotten how 'ill' she felt this morning!!! Do feel awful - if it wasn't for Michael, I may well have let her go back to sleep (but don't tell her that).
Kept thinking on the drive here 'hope he's still doing well' and thankfully he is. We've just come back from a zoom around the hospital. Took a pit stop in WHsmiths, trying to tempt him with some food/nosh. Opted for choc buttons, but while I left him sitting there to draw some money out, obviously being surrounded by all that nosh got his tastebuds goings and he then went for a bar of choc and crisps. Then went to the Cafe to get a coffee. Bit concerned as very busy (it was lunchtime) and worried about all those nasty germs but we found a quiet spot. Great to be out and without even realising it, while we were talking, Michael had eaten half a packet of crisps. Fantastic! Think this will have to be a regular daily trip out - definitely a better way to get him to eat rather than sitting in bed with people trying to tempt him with food.
Justine
read my blog:www.the-transplant-wife.blogspot.com
14 November 2011
Monday evening
I have to say the change from Saturday to today was great. When I arrived this morning, Michael looked much (ok a little) more cheerful. He hasn't had a temperature for two days, which really is cause for celebration - although I am a little apprehensive about getting too excited as things seem to change (and not always for the better) so quickly. But, for the moment, things are definitely looking more positive. He's definitely not feeling as sick. He is still counting the hours until his next anti-sickness injection but hasn't vomitted as often. Although no temperature, he is still getting the sweats but that's usually at the time when he's feeling very nauseas.
Surgeon is delighted now that the virus seems to have worked it's way through the system. He is still suffering with achy joints but that hopefully will soon leave his system too. He has lost a little bit of weight although again nothing to worry about as he was higher than his usual weight anyway from being on tpn. They will obviously keep a close eye on this, together with his enteral (stomach/jejunum tube) feed and his magnesium levels which are sort of linked. He's still on 60ml per hour - not sure when they are thinking of increasing this and the optimum rate for Michael would be about 70/80ml - so he's not far off. I believe that at the moment, as he's not getting enough feed that's why his magnesium levels are low. Once this is increased, and hopefully he starts to eat, this will all level out. Again, no pressure whatsoever with food, although he has requested some cheese slices for tomorrow - as always I'll be there to help out if he doesn't want to eat them (and I wonder why he's losing the weight and I'm not!!!).
He is now off the antibiotic which all transplant patients are on post operative and he will continue to be off this for another week. They do believe being off this helped towards his body fighting off the virus. He will have to go back on this antibiotic or something similar but they don't want to rock the boat while things are looking so much better.
The Surgeon today even spoke about going home - obviously not right now, but just to think about it. I did question about going to the flat first and he did say we were only 1 hour away so that wasn't too problematic. I did mention about relocating to Scotland as Michael coming home seems a bit scary. Especially as we'd always assumed he would first move into the flat. He did also say if we wanted the flat it was of course always available. To be honest, why would he really want to be there, in his little room, when he could be in his own home? But that's still a way off so Michael and I said we wouldn't worry about it at all just yet. But it's great that the word 'home' was even mentioned.
Tonight I have promised myself an early night. It was a really busy weekend - which was lovely. Lots of socialising with friends and family, but exhausting. On Saturday evening I actually found myself in bed before the kids and for the first time I went to bed before one of the kids came home. I think it's all just catching up with me - getting out of bed is a nightmare and this morning, once I'd woken the kids I was tempted to climb back into bed but I knew Michael would be none to pleased. I have given myself an extra day off this week though - to catch up on some sleep and also the kids needs various things so it's off to the shops for my favourite past time (not)- shopping. Can't say it fills me with delight but the thought of saying goodbye to the kids and then climbing back into bed sounds so exciting - I'm counting the hours.
Feeling much more positive today though - so nice that Michael was brighter. We managed two walks today - doing a foot (size 8) more each time. It's all progress - just hope it continues!!
Just a quickie also to say thanks for everyone's support. I know I've said it before, but we have amazing friends and family - 'thank you' just doesn't seem to be enough but.......... THANK YOU!!!!
xx
Surgeon is delighted now that the virus seems to have worked it's way through the system. He is still suffering with achy joints but that hopefully will soon leave his system too. He has lost a little bit of weight although again nothing to worry about as he was higher than his usual weight anyway from being on tpn. They will obviously keep a close eye on this, together with his enteral (stomach/jejunum tube) feed and his magnesium levels which are sort of linked. He's still on 60ml per hour - not sure when they are thinking of increasing this and the optimum rate for Michael would be about 70/80ml - so he's not far off. I believe that at the moment, as he's not getting enough feed that's why his magnesium levels are low. Once this is increased, and hopefully he starts to eat, this will all level out. Again, no pressure whatsoever with food, although he has requested some cheese slices for tomorrow - as always I'll be there to help out if he doesn't want to eat them (and I wonder why he's losing the weight and I'm not!!!).
He is now off the antibiotic which all transplant patients are on post operative and he will continue to be off this for another week. They do believe being off this helped towards his body fighting off the virus. He will have to go back on this antibiotic or something similar but they don't want to rock the boat while things are looking so much better.
The Surgeon today even spoke about going home - obviously not right now, but just to think about it. I did question about going to the flat first and he did say we were only 1 hour away so that wasn't too problematic. I did mention about relocating to Scotland as Michael coming home seems a bit scary. Especially as we'd always assumed he would first move into the flat. He did also say if we wanted the flat it was of course always available. To be honest, why would he really want to be there, in his little room, when he could be in his own home? But that's still a way off so Michael and I said we wouldn't worry about it at all just yet. But it's great that the word 'home' was even mentioned.
Tonight I have promised myself an early night. It was a really busy weekend - which was lovely. Lots of socialising with friends and family, but exhausting. On Saturday evening I actually found myself in bed before the kids and for the first time I went to bed before one of the kids came home. I think it's all just catching up with me - getting out of bed is a nightmare and this morning, once I'd woken the kids I was tempted to climb back into bed but I knew Michael would be none to pleased. I have given myself an extra day off this week though - to catch up on some sleep and also the kids needs various things so it's off to the shops for my favourite past time (not)- shopping. Can't say it fills me with delight but the thought of saying goodbye to the kids and then climbing back into bed sounds so exciting - I'm counting the hours.
Feeling much more positive today though - so nice that Michael was brighter. We managed two walks today - doing a foot (size 8) more each time. It's all progress - just hope it continues!!
Just a quickie also to say thanks for everyone's support. I know I've said it before, but we have amazing friends and family - 'thank you' just doesn't seem to be enough but.......... THANK YOU!!!!
xx
12 November 2011
Saturday
Tiredness has hit and I feel I could sleep for hours. I'll try and keep you updated in as quick a time as possible.
I was hoping to find Michael better that I did today but was a little disappointed. He was sleeping when we arrived and it was lovely to see a little grin on his face when he did wake up. He'd had a fairly good night with no temperature spikes. When we were there though he was extremely cold and was swaddled in blankets - a few thin hospital ones and 3 of our own thick ones. At one point he was sick (never seen the kids move out the room so quickly) but nothing much to bring uo startp.
Surgeon said yesterday he's happy for Michael to start sipping a little, suck on sweets and maybe even have an ice cream. The sipping he's happy to do. We did buy him and icecream today - did have a couple of licks but was more worried he would be sick rather than actually feeling sick. Nathan was though happy to finish it for him. The enteral feed is going well - still on 60ml per hour with a couple of hours break every day. Looks like he won't now need tpn at all (I hope!).
We did manage a walk today - I know he also had one this morning. Guess that's the problem if no one is up with him - no one there to encourage him to have a walk. The nurses obviously don't have time to take him on a stroll down the corridor.
Really don't think there's much else of any significance to report. Maybe after a good night's sleep I'll remember lots more info. For now, I've had enough and I need some sleep.
Night x
I was hoping to find Michael better that I did today but was a little disappointed. He was sleeping when we arrived and it was lovely to see a little grin on his face when he did wake up. He'd had a fairly good night with no temperature spikes. When we were there though he was extremely cold and was swaddled in blankets - a few thin hospital ones and 3 of our own thick ones. At one point he was sick (never seen the kids move out the room so quickly) but nothing much to bring uo startp.
Surgeon said yesterday he's happy for Michael to start sipping a little, suck on sweets and maybe even have an ice cream. The sipping he's happy to do. We did buy him and icecream today - did have a couple of licks but was more worried he would be sick rather than actually feeling sick. Nathan was though happy to finish it for him. The enteral feed is going well - still on 60ml per hour with a couple of hours break every day. Looks like he won't now need tpn at all (I hope!).
We did manage a walk today - I know he also had one this morning. Guess that's the problem if no one is up with him - no one there to encourage him to have a walk. The nurses obviously don't have time to take him on a stroll down the corridor.
Really don't think there's much else of any significance to report. Maybe after a good night's sleep I'll remember lots more info. For now, I've had enough and I need some sleep.
Night x
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