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
8 December 2011
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
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