Well it sounds like I missed a bit of a farce this afternoon. After my caffeine fix I took the dog for a walk - thought it would do us both good to get some fresh air. When I got back, around 4.45pm, I gave the hospital a call to check whether Michael was back in his room. I spoke with his very friendly nurse who explained that he hadn't actually gone down (again) until 4.20pm. Apparently when I'd originally left, Michael had been taken down to the theatre where they realised he hadn't signed the consent form. You can't sign a consent form in theatre (maybe they think you can't make a clear judgment when lying on an operating table) so he was wheeled back to the room. From what I can then understand, he had to sign the form there at which point they said they couldn't fit him in any more, there was a bit of a disagreement with the doctors, and then he was given the go ahead. Can't believe I missed all the excitement.
Anyway, at 6.30pm he was back in his room, feeling very drowsy, but all done. He now has a further tube which goes directly into his intestine for his liquid feed to now get connected to. Some of this feed will filter back into the stomach and the hope is that the stomach will think ' what you doing there?' and push it back down - that will be the stomach's retraining sessions. I really hope it works soon - just be lovely for Michael not to have to constantly think about feeling sick. The other tube is still there so his stomach can be drained if necessary.
We shall see what tomorrow brings!
31 October 2011
Monday afternoon
Michael got changed into one of those stunningly sexy gowns and was wheeled to theatre at 2.20 pm. As much as I hate it, I know Michael hates it more - but how many times do we have to do this. Anyhow, guess it's all over now and he should be back in his room soon.
There was no point in me hanging around, so made the most of it and drove home before it got dark. Stopped off to get Michael some Lucozade (personally I think its disgusting but that's the taste he fancies at the moment) and was casually looking through the food aisles - well actually the sweet aisles but realised it was pointless buying anything until that stomach of his realises it's got to work. Also I really don't need the temptation of all that nosh just sitting there! The Surgeon assured us that the stomach will start working - just hope it's soon so Michael can start moving forward.
Half an hour of peace before the kids return. Not long enough for a sleep - caffeine will just have to suffice.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
There was no point in me hanging around, so made the most of it and drove home before it got dark. Stopped off to get Michael some Lucozade (personally I think its disgusting but that's the taste he fancies at the moment) and was casually looking through the food aisles - well actually the sweet aisles but realised it was pointless buying anything until that stomach of his realises it's got to work. Also I really don't need the temptation of all that nosh just sitting there! The Surgeon assured us that the stomach will start working - just hope it's soon so Michael can start moving forward.
Half an hour of peace before the kids return. Not long enough for a sleep - caffeine will just have to suffice.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Monday
Got up to the hospital a bit later than expected today. Thought I was organised but just as I was leaving I noticed one of the kitchen cupboard doors was about to fall off. Nearly left it but then thought kids would go and open it and it would fall off. Now normally I'd ask Michael to do it, give up waiting and do it myself so I just did it myself. Then got in Michael's car and realised I didn't have my handbag. Couldn't find it in the house either. Retraced my steps and found it sitting in my car from yesterday!! At last, ready to go...
Thankfully no traffic and, at last, after a two week absence, Vanessa was back on the radio!!
When I arrived, Michael was feeling sick. His stomach tube is now on freeflow which is alleviating some of the sickness but he still looks forward, and counts the hours, until his next anti-sickness injection. Unbelievably now, when he drinks you can then watch the fluid come straight out the tube. He's obviously getting a bit dehydrated but he should be nil by mouth anyway for the endoscopy this afternoon.
Before I arrived, also had the stitches out from his stoma. We'd had differing reports as to whether they were dissolvable or not. Apparently not - some had to be left in as they were too difficult to remove and they'll try later on in the week. Not surprisingly, as they've been in for over 3 weeks, skin has started to grow over them.
Michael's poor arms are even more black and blue. His venflons keep going and have to constantly be re-sited. At one point they thought he had cellulitis on his arm but apparently not. It looks very red and sore though. There has been some discussion about putting another central line in to make access easier but the Surgeon is adamant that because of the infection (which seems to be under control - still on antibiotics) he should have no central line. The other alternative is a picc line into his arm but not sure if that's a definite. Would be so much easier as having to site a venflon a day is hard for the Doctors and extremely painful for Michael. He can tell when they're about to stop working because the pain as medicines are syringed through is excrutiating :(
Bathroom just being cleaned but so far the towels that have been on the floor since Friday haven't been removed yet.
Michael's now dozing whilst we wait for him to be taken down. Quite funny but he's been left with all the gadgets and tubes that are needed for the endoscopy. He just has to remember to take them down with him. He'll be given general anaesthetic but shouldn't be under for too long. Could quite do with a sleep myself, although Michael's selfishly hogging the bed!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
30 October 2011
Sunday
It's lovely to have a day at home, but I hate it that I have to hear second hand how Michael's day is. As much as I know I can't be there the whole time, it's not even the guilt, it's more like jealousy that someone else knows the information before I do. Also, I guess when someone relays information, it's always with emotion attached whereas if I'm there, I see it as it is. Still suffering with the awful sickness which is really getting him down :(
Was a horrible day weather wise and I'm not sure if it was that or just pure tiredness that made me count the hours till bedtime. While I was child free in the morning, I tidied up the front garden - or should I say put mounds of leaves in the bins. It always seems such a pointless job. Had all good intentions of doing the back garden as well but time just flew (although I did have a well earned break when a friend popped round with some treats and to be honest, having a catch up and gossip was much more rewarding!!).
Then it was chauffeur time - pick up first child, lunch, pick up next child, drop off home and then pick up last child (the one that smelled of manure). Bed was already calling me by then but no such luck. I would have been quite happy to veg in front of the box all afternoon but how can I when I'm always telling the kids they should find something else to do. So I dosed myself up with some caffeine and we actually played some board games. Always feel it's quite an achievement when we avoid putting on something electrical. Don't get me wrong, there was the usual arguments (between the usual two children) about cheating but I managed to completely ignore that (and them) and it seemed to pass over. Completely lost track of time and then it was a mad rush for dinner (another argument by said two over sharing a latke, although I wasn't able to ignore this time) and to watch the Strictly results.
Another weekend over and back to the usual weekly routine. Just hoping this week my daughter finds her football boots and retrieves her mobile and pe kit from the friend she left them at last week, and more importantly that this procedure really helps to move Michael forward and start feeling a little better.
Yippee - I'm going to bed!
xx
Was a horrible day weather wise and I'm not sure if it was that or just pure tiredness that made me count the hours till bedtime. While I was child free in the morning, I tidied up the front garden - or should I say put mounds of leaves in the bins. It always seems such a pointless job. Had all good intentions of doing the back garden as well but time just flew (although I did have a well earned break when a friend popped round with some treats and to be honest, having a catch up and gossip was much more rewarding!!).
Then it was chauffeur time - pick up first child, lunch, pick up next child, drop off home and then pick up last child (the one that smelled of manure). Bed was already calling me by then but no such luck. I would have been quite happy to veg in front of the box all afternoon but how can I when I'm always telling the kids they should find something else to do. So I dosed myself up with some caffeine and we actually played some board games. Always feel it's quite an achievement when we avoid putting on something electrical. Don't get me wrong, there was the usual arguments (between the usual two children) about cheating but I managed to completely ignore that (and them) and it seemed to pass over. Completely lost track of time and then it was a mad rush for dinner (another argument by said two over sharing a latke, although I wasn't able to ignore this time) and to watch the Strictly results.
Another weekend over and back to the usual weekly routine. Just hoping this week my daughter finds her football boots and retrieves her mobile and pe kit from the friend she left them at last week, and more importantly that this procedure really helps to move Michael forward and start feeling a little better.
Yippee - I'm going to bed!
xx
29 October 2011
Saturday
I know Michael was really looking forward to seeing the kids today but I can tell he's not feeling good because there wasn't even a smile when they walked into his room. Don't get me wrong, I know he was thrilled but as everything is such an effort at the moment, forcing a small smile was even too much. Thankfully the kids don't notice but there's just no sparkle. When you know someone so well, you sort of know how they usually react to things - even if he wasn't up to talking, he'd just normally sit and watch them interact (or argue) with each other. The kids were brilliant - yapping away; eating the food Michael isn't eating; playing on the reclining arm chair; constantly refilling water from the water cooler in the corridor. Makes it easier that Michael's in his own room. They don't have to worry about being too noisy, and they sort of take over the room.
I was hoping to be able to wheel Michael to the cafe again with the kids, but he definitely wasn't feeling up to it. He was desparate for his anti-sickness injections but unfortunately was hours away from having them. He had his tube syringed and quite a lot of bile came out, which made him slightly more comfortable. We did though manage a walk, all 5 of us up and down the corridor.
The surgeon came round this morning and it's likely that they'll change the 'D' tube to a 'J' tube on Monday. He was totally understanding about Michael rejecting the eneteral feed yesterday although was obviously hoping that it would work well this time. It's not going to happen so therefore the best bet is to go for the feed direct into the intestine. This procedure is done as an endoscopy (in the mouth, and down the throat - I'm gagging as I think about it). I can't imagine it's too long a procedure - assuming he'll be slightly sedated.
Someone asked me today wouldn't it help if he just started to eat. If only it was that easy. The fact is, because the stomach has forgotten what to do, he'll just eventually bring the food up (which is what happens to the Enteral feed when it goes into the stomach and stomach's not sure what to do). So even if he could ignore the constant feeling of sickness and force himself to eat, it wouldn't help the situation in any way. Meanwhile, the four of us enjoyed the array of food that's sitting there!!
We stayed for over 3 hours. Sad - but after Michael's marathon stay in UCH last year, the kids are really quite happy to sit in a hospital room. I forget that I see him everyday and they don't visit very often - they're just happy to sit in the same room as their Daddy.
Michael and I had a further walk down the corridor - romantic - just the two of us whilst the kids vegged in the room. I cannot believe how quiet the ward was today. Although all the rooms are full, just seemed to be no one around. Only saw 4 nurses the whole time I was there - can't believe just 'cause it's the weekend that patients don't need as much assistance!!!
Had a lovely relaxing evening. My eldest chef made great home pizza and we enjoyed Saturday evening TV.
Thank goodness the clocks go back - means a slightly later start for the stables tomorrow, although come Monday when I'm driving home from the hospital, I'm really not going to be too thrilled with how dark it's going to be :(
I was hoping to be able to wheel Michael to the cafe again with the kids, but he definitely wasn't feeling up to it. He was desparate for his anti-sickness injections but unfortunately was hours away from having them. He had his tube syringed and quite a lot of bile came out, which made him slightly more comfortable. We did though manage a walk, all 5 of us up and down the corridor.
The surgeon came round this morning and it's likely that they'll change the 'D' tube to a 'J' tube on Monday. He was totally understanding about Michael rejecting the eneteral feed yesterday although was obviously hoping that it would work well this time. It's not going to happen so therefore the best bet is to go for the feed direct into the intestine. This procedure is done as an endoscopy (in the mouth, and down the throat - I'm gagging as I think about it). I can't imagine it's too long a procedure - assuming he'll be slightly sedated.
Someone asked me today wouldn't it help if he just started to eat. If only it was that easy. The fact is, because the stomach has forgotten what to do, he'll just eventually bring the food up (which is what happens to the Enteral feed when it goes into the stomach and stomach's not sure what to do). So even if he could ignore the constant feeling of sickness and force himself to eat, it wouldn't help the situation in any way. Meanwhile, the four of us enjoyed the array of food that's sitting there!!
We stayed for over 3 hours. Sad - but after Michael's marathon stay in UCH last year, the kids are really quite happy to sit in a hospital room. I forget that I see him everyday and they don't visit very often - they're just happy to sit in the same room as their Daddy.
Michael and I had a further walk down the corridor - romantic - just the two of us whilst the kids vegged in the room. I cannot believe how quiet the ward was today. Although all the rooms are full, just seemed to be no one around. Only saw 4 nurses the whole time I was there - can't believe just 'cause it's the weekend that patients don't need as much assistance!!!
Had a lovely relaxing evening. My eldest chef made great home pizza and we enjoyed Saturday evening TV.
Thank goodness the clocks go back - means a slightly later start for the stables tomorrow, although come Monday when I'm driving home from the hospital, I'm really not going to be too thrilled with how dark it's going to be :(
28 October 2011
Friday - 3.00 pm
We escaped from the reality of Michael's hospital bed and 'wheeled' along to the hospital cafe. Michael was wrapped up for arctic conditions. I was careful to ensure that we carefully rolled over the floor bumps (seems to be a lot of metal floor bars that connect different bits of flooring). When the porters take Michael to xray I've noticed how careful they are, knowing any jolts are really painful for the patient. Yesterday, the medics weren't as gentle as there was lots of wincing from Michael. I think I did a fairly good job today and it was smiles the whole way (maybe he was grimacing?!). Had to leave him on his own in the cafe whilst I ran back to the flat to get a stock of ice pops. He really looked like a patient all wrapped up in his wheelchair. I just see Michael but I guess everyone thought 'oh look at that poor patient all on his own' :(
When I returned, Michael then treated me to a coffee - well I bought myself a coffee and we sat and 'escaped' for 10 mins. It was then it dawned on me that neither of us had really thought about how Michael would cope on his own in the flat. For some reason we just assumed he'd be totally self-sufficient when he transfers from hospital to the flat. I don't know why when after previous surgery I would never have dropped him at home and then left him alone. This is something we'll have to work through - know the kids won't be thrilled if I tell them I'm going to be staying in Oxford again but not sure there's another option. Just can't believe we didn't think about this.
Back at the room and back to reality. Michael was sick (only fluid and bile as nothing else there). We knew the nurse was keen to reconnect the enteral feed but Michael has now refused this as he feels he's only going to sick it all up or have it syringed out. My 'professional' opinion is he needs the feed to go into the intestine as his stomach just isn't interested in doing it's job. Guess the nurse will relay Michael's refusal to the Surgeon and we'll see what happens.
And so much for moving Michael to a quieter area so he can sleep, we think it's actually cause he needs less attention from the nurses. That's brilliant but it does also mean you can wait a long time for someone to come when you've pressed the bell. When Michael was just sick, great that I was there to get him tissues, say 'aaahhh' etc as it was a while before the nurse could get there.
Guess another patient was just waiting as well as I could hear him calling 'hello' repeatedly. Was it immature of me to call out in response 'hello'??
Michael's just nodded of to sleep - he's just grunted at my suggestion of a quick walk before I leave.
Justine
read my blog:www.the-transplant-wife.blogspot.com
When I returned, Michael then treated me to a coffee - well I bought myself a coffee and we sat and 'escaped' for 10 mins. It was then it dawned on me that neither of us had really thought about how Michael would cope on his own in the flat. For some reason we just assumed he'd be totally self-sufficient when he transfers from hospital to the flat. I don't know why when after previous surgery I would never have dropped him at home and then left him alone. This is something we'll have to work through - know the kids won't be thrilled if I tell them I'm going to be staying in Oxford again but not sure there's another option. Just can't believe we didn't think about this.
Back at the room and back to reality. Michael was sick (only fluid and bile as nothing else there). We knew the nurse was keen to reconnect the enteral feed but Michael has now refused this as he feels he's only going to sick it all up or have it syringed out. My 'professional' opinion is he needs the feed to go into the intestine as his stomach just isn't interested in doing it's job. Guess the nurse will relay Michael's refusal to the Surgeon and we'll see what happens.
And so much for moving Michael to a quieter area so he can sleep, we think it's actually cause he needs less attention from the nurses. That's brilliant but it does also mean you can wait a long time for someone to come when you've pressed the bell. When Michael was just sick, great that I was there to get him tissues, say 'aaahhh' etc as it was a while before the nurse could get there.
Guess another patient was just waiting as well as I could hear him calling 'hello' repeatedly. Was it immature of me to call out in response 'hello'??
Michael's just nodded of to sleep - he's just grunted at my suggestion of a quick walk before I leave.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Friday
Whilst Michael's have a little rest, I'll blog.
Been another busy morning. When I arrived another transplantee was with Michael. He had his new bowel in early July and was coming back for a check up. One of the Team had asked him to pop in to talk to Michael about how he'd coped and where he was now. Nice guy who looked really well. Obviously he's had lots of ups and downs along the way but did say he felt things were now on an up. Really positive to see someone who's nearly 4 months post op.
Then the Pain Team came round. The Dr was extremely pleased at how michael's pain relief drugs had been decreased. Thought Michael looked remarkably well compared to last week which is always nice to hear. Michael is now just on his Fentanyl patches and the oramorph when needed. He'll have to reduce that very slowly as his body is so used to them having been 'using' for so long. Likelihood is he won't be off them til around April. But that's fine - no rush. To give u an idea of the strength of patches, we'd be lightly sedated if we had them on!!
Next was the Surgeon, ready for Michael's weekly scope. Last week when he had this scope camera put through the stoma they took a biopsy but because everything looked sooo good, it wasn't necessary today. Also the citrolene tests came back to say the bowel is absorbing well - was 25 and apparently that's good. The plan now is to restart the Enteral feed (into the stomach) today at 20ml per hour and increase by 10ml each day. Hopefully Michael's stomach will be able to cope better with this. If not, although the Nutritionist wanted to put a picc line in and restart TPN, because his bowel is now absorbing well, the surgeon does not want to restart tpn. He would want to change his stomach tube (which I think is a D tube) to a J tube. This would then go straight into the intestine, bypassing the stomach. Basically as the stomach hasn't worked for a long while and has often been drained it needs to be retrained. By bypassing the stomach, when the food hits the jejunum (the middle section of the small intestine) there's a bit of backflow into the stomach which should kick start it into working. From what he said, shouldn't take too long.
Michael's about to take me out for a cup of coffee. Nothing like the League of Friends coffee house. Forget Nero!! I'll be whizzing him off in the wheelchair shortly!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
27 October 2011
Thursday Evening
The ambulance eventually picked us at up at 1.55 pm. That 5 minutes made all the difference.
Michael couldn't wait to back to his room - he was cold, tired and felt extremely sick. Although he had managed to eat a refresher chewy thingy while I had my tuna sandwich! The nurse was ready with his anti-sickness. This took ages to adiminster because of his venflon being so 'sad'. I walked back to the flat to get his ice-pops and when I came back the nurse was still giving the injection to him. She then hooked up his antibiotics and then the venflon gave up completely!! When I left, he was still waiting for a new one to be inserted. One of the doctors checked his other arm which was only slightly red and feeling quite hard - apparently nothing to worry about - like a blood clot in the vein (sounds serious to me) which is a bit like a bruise. So another ache for Michael!
The nutritionist popped in for a short while. They're aiming for his stomach feed to go back on tomorrow - starting and 20ml per hour and building up by 10 each day. Hopefully he won't feel as uncomfortable this time and they'll also monitor any changes in his output of liquid from his stomach (the aspiration bit where they can syringe out any excess liquid being produced). On Tuesday they'll assess how much feed he's on and decide whether he needs to be put back onto tpn. If he does, then he'll have a picc line rather than a Hickman. He had this originally when he went on his tpn. It goes into his arm and is more of a temporary line. Would tell you my feelings about the whole thing but I'm too exhausted to express myself.
By the time I left at 4 pm, think Michael was exhausted and ready for some sleep. The drive home wasn't the best as it was drizzling the whole way. So not looking forward to the clocks changing at the weekend, and then having to drive in the dark.
Anyway, another wash load on, one child asleep, ironing up to date and I can't wait to jump into bed myself. Need to calm myself down first as my darling daughter has just realised she can't find her football boots which she needs tomorrow. I was impressed that I managed to hold my temper - logic would tell you that if they're not at home they must be at school - for her sake I hope so!!!
Night xx
Michael couldn't wait to back to his room - he was cold, tired and felt extremely sick. Although he had managed to eat a refresher chewy thingy while I had my tuna sandwich! The nurse was ready with his anti-sickness. This took ages to adiminster because of his venflon being so 'sad'. I walked back to the flat to get his ice-pops and when I came back the nurse was still giving the injection to him. She then hooked up his antibiotics and then the venflon gave up completely!! When I left, he was still waiting for a new one to be inserted. One of the doctors checked his other arm which was only slightly red and feeling quite hard - apparently nothing to worry about - like a blood clot in the vein (sounds serious to me) which is a bit like a bruise. So another ache for Michael!
The nutritionist popped in for a short while. They're aiming for his stomach feed to go back on tomorrow - starting and 20ml per hour and building up by 10 each day. Hopefully he won't feel as uncomfortable this time and they'll also monitor any changes in his output of liquid from his stomach (the aspiration bit where they can syringe out any excess liquid being produced). On Tuesday they'll assess how much feed he's on and decide whether he needs to be put back onto tpn. If he does, then he'll have a picc line rather than a Hickman. He had this originally when he went on his tpn. It goes into his arm and is more of a temporary line. Would tell you my feelings about the whole thing but I'm too exhausted to express myself.
By the time I left at 4 pm, think Michael was exhausted and ready for some sleep. The drive home wasn't the best as it was drizzling the whole way. So not looking forward to the clocks changing at the weekend, and then having to drive in the dark.
Anyway, another wash load on, one child asleep, ironing up to date and I can't wait to jump into bed myself. Need to calm myself down first as my darling daughter has just realised she can't find her football boots which she needs tomorrow. I was impressed that I managed to hold my temper - logic would tell you that if they're not at home they must be at school - for her sake I hope so!!!
Night xx
Thursday - 12.50 pm
Well that's made my day - transport is coming at 2pm. One of the nurses just told us - thought I'd be clever and phone the Churchill. Unfortunately it transpires they were the ones who booked it - and 2pm was to give plenty of time if they had to do both echoes. Stressed that Michael was desperate for his anti sickness and that oramorph would go down well as it wasn't given before he left. His nurse said she'd ask the ward clerk but I'm not hopeful. Understand that transport can't be organised straight away but to sit here til 2pm is very very very frustrating (feel like screaming).
Just seems ilogical that an in-patient who's on regular drugs and feels lousy can be sent to another hospital for tests but has to wait around before getting back. So much for patients trying to relax.
Maybe I'll book a cab.
Meanwhile, Michael's still having problems with his venflon (that's apparently the new name for cannula). A new one was put in on Tuesday evening - that stopped working and a further one was put in last night. Well, the arm where he had Tuesday's in has (we've just noticed) started to go red and feels quite hot. I know the nurse mentioned yesterday that if they're left in too long you could get flubitus (not really sure what it is but know a while back my Dad had suspected dvt but it was flubitus). And now, the arm that has the venflon in it is starting to go red. But we're not back at the Churchill so we can't ask/show them. Aaaaaarrrrrrggggghhhhh
Justine
read my blog:www.the-transplant-wife.blogspot.com
Just seems ilogical that an in-patient who's on regular drugs and feels lousy can be sent to another hospital for tests but has to wait around before getting back. So much for patients trying to relax.
Maybe I'll book a cab.
Meanwhile, Michael's still having problems with his venflon (that's apparently the new name for cannula). A new one was put in on Tuesday evening - that stopped working and a further one was put in last night. Well, the arm where he had Tuesday's in has (we've just noticed) started to go red and feels quite hot. I know the nurse mentioned yesterday that if they're left in too long you could get flubitus (not really sure what it is but know a while back my Dad had suspected dvt but it was flubitus). And now, the arm that has the venflon in it is starting to go red. But we're not back at the Churchill so we can't ask/show them. Aaaaaarrrrrrggggghhhhh
Justine
read my blog:www.the-transplant-wife.blogspot.com
Thursday - 12.20pm
All fine and doesn't need internal echo. Some fluid around heart but nothing unusual for post op. Michael is extremely relived that no further echo needed.
Now waiting for transport home - not sure how long we'll be waiting!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Thursday
Michael had slightly more sleep being in a quieter part of the ward. Still not feeling fantastic but he did manage to wash himself in the bathroom before collapsing back into bed.
His pain relief pump is now coming down and instead of that he'll have oramorph (liquid morphine) which he can have every two hours if needed. As Michael says, pain's now not really the problem - he's focused more on the sickness :(
Transport came at 11am and off we went on our ambulance ride to the Radcliffe. Had to wrap Michael up in his fleece blanket as he has no socks, coat at the hospital. How was I to know he was going to surprise me with a day trip out?
Anyway, the paramedics eventually found the dept we had to get to. From our own experience, Radcliffe is huge and it's easy to get lost. Quite frustrating when the nursing staff don't even know what operation you've had and aren't particularly clear about what procedures are to take place. Anyway, the consultant arrived and put us at ease, clearly explaining the plan. Michael's right now having an external echo to check whether there's any infection around the heart valves. It's just precautionary but the surgeon is keen to rule this out as they still haven't located the source. Hopefully those pictures should be clear enough. If not, they have to do an internal echo which means putting a camera down his throat. He'll be slightly sedated for this and have local anaesthetic sprayed on the throat. I will be having general anaesthetic!!!!
Waiting for Michael to come back now. The day ward we're on at the Radcliffe is lower ground and therefore horrible strip lighting and no natural light - here comes the headache.
Earlier on at the Churchill, one of the pain team came in. She hadn't seen Michael since last week and she was amazed at how much better he looked. I can see it as well. Michael on the otherhand didn't look convinced. He's really looking forward to seeing the kids at the weekend - hopefully that will put a smile on his face.
Justine
read my blog:www.the-transplant-wife.blogspot.com
His pain relief pump is now coming down and instead of that he'll have oramorph (liquid morphine) which he can have every two hours if needed. As Michael says, pain's now not really the problem - he's focused more on the sickness :(
Transport came at 11am and off we went on our ambulance ride to the Radcliffe. Had to wrap Michael up in his fleece blanket as he has no socks, coat at the hospital. How was I to know he was going to surprise me with a day trip out?
Anyway, the paramedics eventually found the dept we had to get to. From our own experience, Radcliffe is huge and it's easy to get lost. Quite frustrating when the nursing staff don't even know what operation you've had and aren't particularly clear about what procedures are to take place. Anyway, the consultant arrived and put us at ease, clearly explaining the plan. Michael's right now having an external echo to check whether there's any infection around the heart valves. It's just precautionary but the surgeon is keen to rule this out as they still haven't located the source. Hopefully those pictures should be clear enough. If not, they have to do an internal echo which means putting a camera down his throat. He'll be slightly sedated for this and have local anaesthetic sprayed on the throat. I will be having general anaesthetic!!!!
Waiting for Michael to come back now. The day ward we're on at the Radcliffe is lower ground and therefore horrible strip lighting and no natural light - here comes the headache.
Earlier on at the Churchill, one of the pain team came in. She hadn't seen Michael since last week and she was amazed at how much better he looked. I can see it as well. Michael on the otherhand didn't look convinced. He's really looking forward to seeing the kids at the weekend - hopefully that will put a smile on his face.
Justine
read my blog:www.the-transplant-wife.blogspot.com
26 October 2011
Wednesday Evening
Car eventually sorted and I got to the hospital just before 6.30 - somewhat later than expected. Bit of a shock when I found Michael's room empty but he's now been moved to a quieter room in the hope he can get some sleep.
Today was not a good day. Michael's been feeling extremely sick, still having hot/cold flushes and generally just not feeling good. The antibiotic which was making him feel sicker has not been replaced yet, although I forgot to ask him whether he felt less sick since not having it. I think perhaps not as the sickness is really getting him down. He's had a very low day although the Transplant Coordinator did try and cheer him up and took him out to the cafe for a coke. I have visions of wheelies in the wheelchair along the corridor!!!! The whole transplant team are amazing - such a personal touch. Being such a relatively new operation, and with such a great Team, it really does feel like your part of a very special club.
His stomach feed has now come out to hopefully alleviate some of the sickness. It was agreed to give Michael and his gut a complete rest. Not sure for how long - think they'll keep assessing. In the back of my mind can't help thinking that at some stage they'll say he needs another line in so that he can go back on tpn to give him nutrients/calories (not that I'd say that to Michael). It's not that there's a problem with that but it would be a shame to have to go back to it. Now when he has his stomach aspirated (drains the fluids that the body produces and which aren't been fully absorbed), if it's more than 200ml he has to have it pushed back in otherwise he won't be getting the electrolytes his body needs.
Michael was at a very low point when I arrived. Very tearful; missing the kids terribly - although I did remind him that once he'd sat at the table with them for one meal, with all their niggles and petty arguments, he'd realise the peace and quiet is easier! I think tonight he was wishing he could have gone back to Nathan's Barmitzvah. It's so hard to cheer him up - tried the 'be positive; look to the future', etc but the reality is when someone's feeling so low they don't really need you to say anything. I felt so useless - with everything Michael's been through, it's not very often I see him like that. He was saying that he's never found anything so difficult and apart from the sickness, his body is exhausted.
As bad as he felt, we did have a short corridor walk. Not attached to any drips today so drip stand free. Great I thought but forgot that he usually uses the stand to prop himself up. That's where I came in handy! Tried holding hands first but I just couldn't support the weight he was putting on me (sort of dragging my hand down). So we did the 'support an elderly person' walk. He really used me as his support and I think the walk was as difficult for me as it was for him. Hopefully that will have tired him out to encourage sleep.
We have a day trip out to the John Radcliffe tomorrow. Needs to have an ultrasound to check no fluid near the heart (the dreaded bug again). If clear that's it. If not, another test - not sure what.
So tonight I'm back at the flat. The kids may not have been thrilled that they were shipped out again but they've definitely got better accommodation than me. I've got flat mates as well. Nice people - their sister/mum just had bowel transplant. So it's a full house. Not ideal sharing a bathroom and toilet with strangers. Its great having the flat to stay in but........ Quite funny, the three of us were discussing how the flat really needs a makeover (as well as a deep clean). Whilst writing thinking maybe I'll contact 60 Minute Makeover? Could be that Michael and this lady are both recuperating in the flat at the same time - think that will be hard as there's no living room and it means spending a lot of time in the bedroom (obviously their own). Not even anywhere in the kitchen to sit and eat. It's not like it's summer and he could spend a lot of time outside (although our summers don't necessarily guarantee that). Guess they didn't expect two transplants to happen in such quick succession.
Time for sleep. Don't want to oversleep in the morning and miss our trip out!
Night xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Wednesday
Day off today - well sort of!! My car needed a service and MOT which I'd been putting off and could do so no longer. So after dropping Waffle off at his girlfriends, I drove to Watford and left the car at the Garage. Meanwhile, being the mad person I am, I decided it would be really good exercise, as the weather was dry, to cycle home. Well - talk about hard work. Sitting on my indoor bike, watching tv, is an absolute doddle. It may be exercise, but after today, I realise it's about as energetic as having a shower!! It took about 25 minutes to get home, with lots of huffing, puffing, stopping and moaning to myself. Did have to push the bike a little. I always remember when Michael was training for his New York bike ride that he came to realise what you think is a flat land, more often than not, is an incline. And of today, I found that out for myself. It was a hard slog, but I did make it home in one piece - somewhat exhausted. I seem to have been on go slow ever since but it has made me realise what amazing people all took part in the Guts in Motion Paris to London bike ride in July. It's no easy task; Watford to Radlett was hard enough!!!!
Typically, the car needs two new tyres and breakpads to pass its MOT - it's so frustrating (and expensive)!! Anyway, taken most of the day to sort and therefore I've spent some time at home, which has been lovely. Know I should have gone back to bed as I feel so tired but couldn't do that so instead caught up on some paperwork, cleaning, washing, etc. Having now finished, and waiting for the Garage to call, realise I should have opted for the sleep.
Once I've picked the car up, I'll zoom off the Oxford and see Michael. Guess I now need to listen into the traffice news to check the motorways - wish me luck!!
Typically, the car needs two new tyres and breakpads to pass its MOT - it's so frustrating (and expensive)!! Anyway, taken most of the day to sort and therefore I've spent some time at home, which has been lovely. Know I should have gone back to bed as I feel so tired but couldn't do that so instead caught up on some paperwork, cleaning, washing, etc. Having now finished, and waiting for the Garage to call, realise I should have opted for the sleep.
Once I've picked the car up, I'll zoom off the Oxford and see Michael. Guess I now need to listen into the traffice news to check the motorways - wish me luck!!
25 October 2011
Tuesday Evening
It's a terrible thing to admit but although I say Michael's feeling really antisocial and doesn't want any visitors yet, I'm feeling a little bit the same. It's wonderful that so many people are being so amazingly caring and always enquiring about Michael, myself and the kids and I am so so grateful. The trouble is, I'm am so tired, physically and emotionally, that when I'm not with Michael or the kids, I just want to hibernate. Also, when I am home with the kids, I want to be with them and not yapping on the phone. I know they don't need me to play with them all evening but I don't want them to feel that I'm in the house but not really with them. So excuse me if I don't always answer the phone. I have been trying to catch up with phone calls whilst I'm in the car (handsfree) but the reception's not always fantastic.
So this morning, before I set off, I took the little patient for a quick walk round the block, hoping not to see anyone and get into a lengthy conversation. My morning is timed perfectly and Waffle is only given 5 mins, so if I get delayed, my routine is ruined. No one around this morning! This evening though, took Waffle on his longer walk - it's actually very therapeutic, especially as the weather is still so mild. I cannot tell you how many people I bumped into. Every 10 paces there was someone else I knew - so much for being antisocial!!
When I left Michael this afternoon, he was quite low again. As much as I tell him he's doing really well and it's only been just over two weeks since the op, he's just finding the whole experience really tough. The constant feeling of sickness is hard to deal with. He said if he hadn't already been suffering with that for over 18 months, maybe he could cope better. In fact, he has spoken to one of the Doctors today about taking him of one of the antibiotics as sickness is one of the side effects. When I left they were looking into an alternative. On the subject of the dreaded bug, it is still in his system (the blood cultures have grown something!) and they are not quite sure why. The xray today was to see if there was anything else floating around his system which could be a source of the infection - but nothing showed up. My understanding is that if they can find the source, they will know exactly how to treat it rather than using the 3 'general' antibiotics that he's now taking (I thing that's right - maybe I'll understand it differently tomorrow). So meanwhile, he's still getting the temperature spikes and cold blasts. I took up his fleece blanket today which is obviously much thicker than the hospital blankets. They are also giving him a ultra sound on his neck where the main line went in - there could perhaps be a clot there hiding which again could be the source. Can't understand that as he already had an ultrasound there last week when he already had the infection, but what do I know. I did ask whether there could perhaps then be a clot where his Hickman line was. They said that could be a possibility but didn't mention about giving that area an ultrasound.
As awful as Michael feels, we did manage two walks up the corridor today. I think he had one chocolate button and did manage to drink nearly a whole glass of lemon barley. Tomorrow is ice-pop day as they should now be frozen!
I'm staying in Oxford tomorrow night, just to give me one day off of driving both directions. Kids all sorted - happy enough I think (unfortunately, even if they're not, I'm still staying!). Up until an hour ago, I completely forgot about the dog but he's going to his girlfriend now(one of his many!!).
Night xx
So this morning, before I set off, I took the little patient for a quick walk round the block, hoping not to see anyone and get into a lengthy conversation. My morning is timed perfectly and Waffle is only given 5 mins, so if I get delayed, my routine is ruined. No one around this morning! This evening though, took Waffle on his longer walk - it's actually very therapeutic, especially as the weather is still so mild. I cannot tell you how many people I bumped into. Every 10 paces there was someone else I knew - so much for being antisocial!!
When I left Michael this afternoon, he was quite low again. As much as I tell him he's doing really well and it's only been just over two weeks since the op, he's just finding the whole experience really tough. The constant feeling of sickness is hard to deal with. He said if he hadn't already been suffering with that for over 18 months, maybe he could cope better. In fact, he has spoken to one of the Doctors today about taking him of one of the antibiotics as sickness is one of the side effects. When I left they were looking into an alternative. On the subject of the dreaded bug, it is still in his system (the blood cultures have grown something!) and they are not quite sure why. The xray today was to see if there was anything else floating around his system which could be a source of the infection - but nothing showed up. My understanding is that if they can find the source, they will know exactly how to treat it rather than using the 3 'general' antibiotics that he's now taking (I thing that's right - maybe I'll understand it differently tomorrow). So meanwhile, he's still getting the temperature spikes and cold blasts. I took up his fleece blanket today which is obviously much thicker than the hospital blankets. They are also giving him a ultra sound on his neck where the main line went in - there could perhaps be a clot there hiding which again could be the source. Can't understand that as he already had an ultrasound there last week when he already had the infection, but what do I know. I did ask whether there could perhaps then be a clot where his Hickman line was. They said that could be a possibility but didn't mention about giving that area an ultrasound.
As awful as Michael feels, we did manage two walks up the corridor today. I think he had one chocolate button and did manage to drink nearly a whole glass of lemon barley. Tomorrow is ice-pop day as they should now be frozen!
I'm staying in Oxford tomorrow night, just to give me one day off of driving both directions. Kids all sorted - happy enough I think (unfortunately, even if they're not, I'm still staying!). Up until an hour ago, I completely forgot about the dog but he's going to his girlfriend now(one of his many!!).
Night xx
Tuesday - 2.15 pm
Michael's lovely nutritionist just came round. We were having a discussion on the whole eating thing. She is completely understanding that bowel transplant patients (that's her area) are going to find it difficult to eat and that it is really not a problem. It's a case of do what your body tells you and there is absolutely no pressure.
At the moment she, together with Michael's cooperation and agreement, is trying to put up his peg feed (the one direct into stomach) by 10ml per hour, per day. He's now on 30, since yesterday and they've agreed it will go up to 40 ml tomorrow.
I wanted to know if there's a possibility of Michael going back onto tpn (obviously would have to have another line put in). This couldn't happen at the moment because of those little bugs anyway and it would be nice if he didn't have to. But generally it would be based on a citrolene test (sure that's not the spelling and I may have even misheard the pronounciation). That test shows certain proteins (may be amino acids?!?) in the villi (intestinal villi are tiny, finger-like projections that protrude from the lining of the intestinal wall). When Michael had his scope last week, I could see all the very healthy looking villi floating around on the monitor!! There are certain proteins (or is it amino acids?) in the bowel post op and they are looking for those to lower and the citrolene to increase. Once they've increased, it means the bowel is absorbing the correct nutrients and doesn't need the tpn nutrients. Just taking bloods now to do this citrolene test.
Not sure if the above is very clear but basically absolutely no pressure in eating; constantly checking to see if villi is working properly and most importantly they wouldn't let Michael waste away!!
With all the feed that's going into Michael's stomach, he still has to have his tube drained occasionally as the feed makes him feel quite bloated and full. The nutritionist again reassured us that this is not problematic as the amount that goes in more than exceeds what's coming out!!
So much to take in (pardon the pun!)
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Tuesday - 12.10 pm
Michael's just getting prepared to go down for an xray. Quite comical seeing the nurse prepare all his cables. Think I could do it myself. Lots of beeping of equipment and puzzled looks. Given up on one of them and decided Michael can have a 20 min break instead!!
So nice to have a friendly porter roll the bed down. Actually talking to Michael and warning him about the bumps as we go into the lift. Quite often, its just a silent ride down. The porters don't wait around but usually come back quite quickly to return us to the room. Shouldn't say that - bet we'll have a long wait today. Reminds me of a time last year in UCH. Michael had to go to one of the other buildings. The porter took us via the underground tunnels of the hospital, Michael in a wheelchair (even though he was quite mobile at this stage). We had the appointment and then were told to wait for the porter to come back. We waited and waited and then just decided to give up and make our own way back. We couldn't use the tunnels as they are staff only. We got down to the ground floor and the only way to get back to the main hospital was to go outside and cross the road. So, up Michael got in his pyjamas and we made a dash for it. Meanwhile we got back to the ward - not sure if the porters ever realised they'd lost a patient!!!
So xray done and we're now waiting.....
Michael's greeting for me today was that he needed the loo. Encouraged him to use the bathroom rather than those awful cardboard bed pan things. Unplugged the cables (no beeping at all) and off he went. Now I'm not sure I should be blogging this as it's not normally stuff people want to discuss but as this blog is also going to be Michael's diary of events at a later stage, I shouldn't really miss it out. So - he's just passing what he describes as tar at the moment. It's purely old blood and this is quite usual. His 'big motion' last week was actually the remains of what was already in the bowel (yuck I know!!). Main thing is that things are getting through.
Hasn't eaten anything today. Forgot to say that yesterday he had 1 whole chocolate button, (or did I tell u?). And today I've had 5 already.
Porter just turned up - not a long wait at all. :)
Can't say he was jumping for joy at the array of snacks I bought up. Happy with the ice pops but disappointed that they weren't frozen yet. Took them to the flat and hopefully they'll be ready later. His just feeling a bit sick and was a bit sick earlier on.
Just back at the room and hoping I can persuade him to have a quick walk. As I type this Michael actually suggested a walk - so we're off.
Justine
read my blog:www.the-transplant-wife.blogspot.com
So nice to have a friendly porter roll the bed down. Actually talking to Michael and warning him about the bumps as we go into the lift. Quite often, its just a silent ride down. The porters don't wait around but usually come back quite quickly to return us to the room. Shouldn't say that - bet we'll have a long wait today. Reminds me of a time last year in UCH. Michael had to go to one of the other buildings. The porter took us via the underground tunnels of the hospital, Michael in a wheelchair (even though he was quite mobile at this stage). We had the appointment and then were told to wait for the porter to come back. We waited and waited and then just decided to give up and make our own way back. We couldn't use the tunnels as they are staff only. We got down to the ground floor and the only way to get back to the main hospital was to go outside and cross the road. So, up Michael got in his pyjamas and we made a dash for it. Meanwhile we got back to the ward - not sure if the porters ever realised they'd lost a patient!!!
So xray done and we're now waiting.....
Michael's greeting for me today was that he needed the loo. Encouraged him to use the bathroom rather than those awful cardboard bed pan things. Unplugged the cables (no beeping at all) and off he went. Now I'm not sure I should be blogging this as it's not normally stuff people want to discuss but as this blog is also going to be Michael's diary of events at a later stage, I shouldn't really miss it out. So - he's just passing what he describes as tar at the moment. It's purely old blood and this is quite usual. His 'big motion' last week was actually the remains of what was already in the bowel (yuck I know!!). Main thing is that things are getting through.
Hasn't eaten anything today. Forgot to say that yesterday he had 1 whole chocolate button, (or did I tell u?). And today I've had 5 already.
Porter just turned up - not a long wait at all. :)
Can't say he was jumping for joy at the array of snacks I bought up. Happy with the ice pops but disappointed that they weren't frozen yet. Took them to the flat and hopefully they'll be ready later. His just feeling a bit sick and was a bit sick earlier on.
Just back at the room and hoping I can persuade him to have a quick walk. As I type this Michael actually suggested a walk - so we're off.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Tuesday
Another day and now that the sun has actually come up, this is my most awake of the day! Can't stand these dark mornings. The alarm goes off but I don't really hear it - its part of my dreams. Eventually I manage to drag myself out of bed, keeping one ear on the traffic news. Why does the M25 always get mentioned??
Well the kids have now gone to school. Tantrums over hair not doing what it should (and that's not even Lauren) and usual siblings spats over nothing but now the house is peaceful. I'm just cycling while catching up on another soppy American series. I used to do lots of walking from and to the station when Michael's been in UCH. All I do is now sit on my bottom in the car so feel I should do something energetic. I've got the time as I can't see the point in leaving before 9 as I'll just sit in traffic.
Hopefully the journey won't take too long this morning. On the way home yesterday, tried to cut of the M40 early as the radio said M25 traffic from junction 18-25 - 1hour delay. At last I've remembered which junction I get on and off!! Thought I would be really clever but no such luck and I arrived on the M25 anyway. Meanwhile - no traffic and when the next traffic update came on, it said traffic from 21 - 19. Now I've just got to figure clockwise and anticlockwise!!!
Will let you know how I find Michael. Looked more like himself yesterday so let's hope there's a little more progress today. I'm armed with cheese, ice-pops, jelly and crackers. I'll let you know how much he eats and how much I get through.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Well the kids have now gone to school. Tantrums over hair not doing what it should (and that's not even Lauren) and usual siblings spats over nothing but now the house is peaceful. I'm just cycling while catching up on another soppy American series. I used to do lots of walking from and to the station when Michael's been in UCH. All I do is now sit on my bottom in the car so feel I should do something energetic. I've got the time as I can't see the point in leaving before 9 as I'll just sit in traffic.
Hopefully the journey won't take too long this morning. On the way home yesterday, tried to cut of the M40 early as the radio said M25 traffic from junction 18-25 - 1hour delay. At last I've remembered which junction I get on and off!! Thought I would be really clever but no such luck and I arrived on the M25 anyway. Meanwhile - no traffic and when the next traffic update came on, it said traffic from 21 - 19. Now I've just got to figure clockwise and anticlockwise!!!
Will let you know how I find Michael. Looked more like himself yesterday so let's hope there's a little more progress today. I'm armed with cheese, ice-pops, jelly and crackers. I'll let you know how much he eats and how much I get through.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
24 October 2011
Monday afternoon
It's been a busy morning. I arrived about 11 am - bit of traffic on the M25 today and then seemed to take ages getting through Headington (area where the hospital's located). Have to admit felt quite stressed when I arrived.
A lot of poeple have 'visited' today. Transplant doctor; stoma nurse; infectious disease doctor; phsyio; nurse; coordinator...... Was just a continuous flow.
Michael's temp still spiking, although seems to slowly be coming down. Still getting the hot and cold flushes which are particularly bad at night and stopping him having a comfortable sleep.
His feed which goes through his peg (into stomach) is now up to 25ml per hour but that's going up to 30 today. In fact as I write Michael's trying to negotiate with the nurse having it increased later rather than earlier. He's nervous it will make him feel more sick.
Now that he has no Hickman line or main line, he has no easy access points for his drugs,etc. His veins are terrible - one cannula has already blown and the second one which went in on Friday is about to give up. It's not unusual when so many drugs are being put through for them to stop working. Apparently, certain drugs are more painful when they go through. Diazapan is the painful one at the moment - he'll now be trying to take that orally. Ideally they'd like as many taken orally as possible to protect the cannula. Michael's already taking his anti-rejection (5 of them) tablets orally and is a bit worried about taking too much. May also have to have some of them IM (in the muscle!).
The infection seems to be fairly under control. They're aiming for him to be on his present antibiotics for another week (14 days in total) and hopefully that should kill all the bugs. Nothing been growing from recent blood cultures which is positive news.
We had a walk along the corridor. Michael managed a bit further today - had his rest at the end and then we made it back to the room. While out of bed, I treated Michael to a long awaited hair wash. I reckon his last one was nearly 3 weeks ago. Latex gloves on and I was happy to oblige. Quite a bit if shampoo later and Michael had clean, shiny hair and definitely felt better. He even managed a shave and a good wash and was then exhausted and ready to climb back into bed.
No chance of sleep as people kept coming in. Michael then had his stoma changed. At the moment, and it is early days, he's not coping well with that. Really hates the idea of something that should be inside, being on the outside. I've amazed myself and really don't find it as bad as I thought I would but then it's not on my body so it's hardly the same. The stoma nurse was saying that some people never adapt to having one and find it difficult to cope with. I did suggest to Michael that perhaps when he starts dealing with it himself, he will be more accepting. The positive is that it is only for a short period and hopefully in no time at all will be reversed. It's just upsetting to see the look of disgust on his face when the staff are dealing with it.
Michael is having a well earned sleep now. I've only got 20 mins until I leave - I know he'll be upset if I leave without saying goodbye but it would be a shame to wake him :(
Don't want to be home too late for the kids. Also want to pop into the supermarket on the way home and see if I can find some things to entice Michael to eat. So far, anything I've suggested has been met with a firm 'no'.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
23 October 2011
Sunday continued...
Whoops - sent the last blog without finishing it.
So yes, Michael's parents were with him today. He still has a temperature. The Hickman line came out late last night and obviously still on his antibiotics. Now that he isn't on his tpn, he is going to have to try and drink a bit more as no fluids going in. Be helpful if he could start eating but to be honest they have said there is absolutely no rush to eat - he's just got to do when ready. He has though been eating sweets (no change there!). For some reason his parents think I have more sway over getting him to drink and eat - they are so wrong. Post op has always been really hard to get food down Michael and this time will be even harder!!
He was more chatty today - which is a good sign, although still a bit forgetful about things he's already been told. Hoping that's just the drugs.
Well I'm off now to spend some time with my favourite middle child as the other two are out.
To finish just want to say on behalf of Michael 'come on you Rs' - QPR beat Chelsea xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
So yes, Michael's parents were with him today. He still has a temperature. The Hickman line came out late last night and obviously still on his antibiotics. Now that he isn't on his tpn, he is going to have to try and drink a bit more as no fluids going in. Be helpful if he could start eating but to be honest they have said there is absolutely no rush to eat - he's just got to do when ready. He has though been eating sweets (no change there!). For some reason his parents think I have more sway over getting him to drink and eat - they are so wrong. Post op has always been really hard to get food down Michael and this time will be even harder!!
He was more chatty today - which is a good sign, although still a bit forgetful about things he's already been told. Hoping that's just the drugs.
Well I'm off now to spend some time with my favourite middle child as the other two are out.
To finish just want to say on behalf of Michael 'come on you Rs' - QPR beat Chelsea xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Sunday
As much as I hate getting up sooo early on a Sunday to take Nathan to the stables, there is something about being out and about when the world is asleep. Even managed to sort the house out while the other two slept!!
Lauren and I went to Brent Cross as she still had some birthday vouchers left and seems to have grown out of yet another wardrobe full of clothes. I cannot understand why people go there for pleasure. Now admittedly I am the world's worst shopper, but the amount of people who are having a leisurely stroll around the shops, with their entire family, stopping those of us on a mission (which is, buy as quickly as possible and get out). Surely there's better place to have a day out than Brent Cross. My take on local shopping centres is: if you're actually wanting to buy things without browsing in every shop, go to Harlequin; if you just fancy a day trip out - Brent Cross is the place for you. So glad to get home.
I feel like I should be saying it's odd doing all these things without Michael but to be honest it's so long that we've had anything normal in our household. For the last 18 months it's been quite usual that I've been out and about with the kids. With his drug regime and afternoon sleep, we always used to go off without him. To be honest, if he wasn't sleeping, he didn't really have the energy anyway. Can't wait for all that to change.
His parents kept him company today
Justine
read my blog:www.the-transplant-wife.blogspot.com
Lauren and I went to Brent Cross as she still had some birthday vouchers left and seems to have grown out of yet another wardrobe full of clothes. I cannot understand why people go there for pleasure. Now admittedly I am the world's worst shopper, but the amount of people who are having a leisurely stroll around the shops, with their entire family, stopping those of us on a mission (which is, buy as quickly as possible and get out). Surely there's better place to have a day out than Brent Cross. My take on local shopping centres is: if you're actually wanting to buy things without browsing in every shop, go to Harlequin; if you just fancy a day trip out - Brent Cross is the place for you. So glad to get home.
I feel like I should be saying it's odd doing all these things without Michael but to be honest it's so long that we've had anything normal in our household. For the last 18 months it's been quite usual that I've been out and about with the kids. With his drug regime and afternoon sleep, we always used to go off without him. To be honest, if he wasn't sleeping, he didn't really have the energy anyway. Can't wait for all that to change.
His parents kept him company today
Justine
read my blog:www.the-transplant-wife.blogspot.com
22 October 2011
Saturday Evening
First day I haven't blogged throughout - sorry but it's been a lovely day with the kids, doing nothing much. The best bit being the lie in this morning.
When I spoke to the nurse in the morning, she said he'd had another uncomfortable night because of the temperature and that he was having his Hickman line removed today. Wasn't sure whether that was because the results from yesterday showed no infection in the collection and therefore it was coming from the Hickman line or whether precautionary. Having spoken to the nurse this evening, I'm still unsure.
Michael was in the capable hands of his sister this morning. They had their morning stroll up the corridor!! Still had his temperature, so pretty much a repeat of yesterday.
At 7 pm the Hickman still hadn't been removed. The doctors were all in surgery so no one was around to take it out!!
That really is all there is today. Having just finished a pile of ironing (actually less than expected), I'm now vegging in front of the TV with the kids (no - not X Factor, we've opted for Merlin). Not sure if my eyes will stay open til the end!
Night x
When I spoke to the nurse in the morning, she said he'd had another uncomfortable night because of the temperature and that he was having his Hickman line removed today. Wasn't sure whether that was because the results from yesterday showed no infection in the collection and therefore it was coming from the Hickman line or whether precautionary. Having spoken to the nurse this evening, I'm still unsure.
Michael was in the capable hands of his sister this morning. They had their morning stroll up the corridor!! Still had his temperature, so pretty much a repeat of yesterday.
At 7 pm the Hickman still hadn't been removed. The doctors were all in surgery so no one was around to take it out!!
That really is all there is today. Having just finished a pile of ironing (actually less than expected), I'm now vegging in front of the TV with the kids (no - not X Factor, we've opted for Merlin). Not sure if my eyes will stay open til the end!
Night x
21 October 2011
Friday : 5.00 pm
Procedure all done - have put another drainage tube in to drain all collection away. That will be tested to see if its what's causing the infection. Should be on his way back to the room.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Friday afternoon
Michael just down in radiology. I could have waited downstairs for him but when the radiologist started explaining how the anaesthetic would sting and then Michael would just feel some pushing as they put in the tube, that was my cue for a quick exit. Held it together until Michael was wheeled off and then made a dash for it. Reminds me of the time a specialist was looking at one of my many moles to see if it needed removing. He started talking about taking a biopsy at which point the blood drained from me and I had to lie down on the couch and the nurse had to bring me water. The dr then told me he wouldn't bother with the biopsy and would just remove it under local anaesthetic!! Pathetic I know but my mind just goes into overdrive. As Michael was being wheeled off he said he was such a woos - I don't think so!
Just had my sugar boost and now back up to the room to wait for Michael.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Friday morning
Could tell when I walked in that Michael didn't feel well. He'd had another bad night - temperature had spiked. He said he felt like he was on fire and they were pouring cold water on him to cool him. Guessing the water bit is a figment of his imagination as he's still in the same pjs!!
The reg came to see him this morning. They're talking about opening him up again and doing another clear out. Not even going to think about that - another anaesthetic, and what feels like another set back. Will wait to see what surgeon says when he comes in.
Holding off posting this blog. Easier to worry on my own - no point stressing others when nothing's been decided.
3 hours later and surgeon now been in. Basically needs to get rid of the source of this infection. He feels its coming from the small collection that's inside and needs to get rid of it (again). Rather than operate as per last week, the raidologists would go in under local anaesthetic and drain it out. Surgeon wants to wait until tomorrow and see whether Michael's still got a temp.
Meanwhile, just finished writing the last paragraph as surgeon popped back in to say he's now just put a request in for radiologist to do the procedure today. Michael wanted to know if it would be painful - apparently not. Not sure when this is happening so now do I go home or wait? Prefer to wait but always feel like I let the kids down when I change plans. Guess they'll just be at their grandparents without me.
Looking at Michael now, sitting in the chair quite comfortably (although if asked, bet he'd say he was uncomfortable), he looks pretty well. Really hope this procedure sorts things. If it's not the collection that's causing the infection, they reckon it will be the Hickman line but the cultures have not come back from that yet. If it is, that line will come out and maybe not go back in - obviously the long term goal is to not be on tpn so why put in another Hickman? We'll see what happens.
Now going to try and find out what time procedure is happening and sort the kids.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
20 October 2011
Thursday Evening
Think my evening blogs are going to start to get earlier and earlier - I'm exhausted!!
Michael was fairly comfortable when I left him around 4 pm today. He was angry with himself as he'd slept for the last 1 1/2 hours, so we couldn't talk but that was down to the diazapan. Also, he hadn't had a good night sleep so needed to catch up. To know that I'm there, he likes to hold my hand (no problem there) but then he moves both our hands to behind his head for his comfort, but most definitely not for mine. Feel cruel slowly removing my hand but after a couple of seconds it does start to go numb! He really is so much more peaceful now when he sleeps - no tossing and turning but still the occasional funny one-sided conversation.
Before I left, he had his central line removed, a cannula put into his hand for drugs and a butterfly needle into his leg for his pca (his pain pump). Now he's got is own pj bottoms, so one leg has to be rolled up so the butterfly needle doesn't hurt.
The infection team came to have a look at Michael as well to find the best way of stopping these bugs breeding. They have now taken cultures from his hickman line (one in his chest for his tpn) as they think maybe bugs could be coming from there. We've been quite lucky that Michael's had no problems with his Hickman. Some people suffer constantly from infections and have to keep having them removed and replaced elsewhere. We've been really conscious of cleaning it properly and up till now have had no problems. All I can say is, as disgusting as I thought it would be having to clean the area where the lines goes in each week for Michael, I got over it and was vigilant in keeping it clean and infection free. But not even two weeks into being in hospital and it may be infected - obviously I need to give some training!! JOKING :)
Cultures takes 1 - 2 days to come back. If it is the Hickman line, then antibiotics for two weeks and if not, antibiotics for just one. Not sure if it comes back negative if they have to look for another area where the bugs are coming from - have to say I'm not entirely sure about this bug thing! Definitely one of those cases of asking questions, thinking you understand the answer and then realising you haven't a clue.
Feel like I haven't stopped this afternoon. Came home, picked up Nathan, dumped bags, had a quick snack, took Waffle to have his stitches out (so brave!), came home, had coffee, doing blog and now about to collect Lauren. Today is really one of those days where I'm feeling the strain of it all - really doesn't help that it's starting to get darker earlier, and the clocks haven't even gone back yet. After nearly two weeks I'm missing have Michael at home - can't believe a few weeks ago I was moaning he was always here. Some people are never satisfied!!
Bye for today. x
Michael was fairly comfortable when I left him around 4 pm today. He was angry with himself as he'd slept for the last 1 1/2 hours, so we couldn't talk but that was down to the diazapan. Also, he hadn't had a good night sleep so needed to catch up. To know that I'm there, he likes to hold my hand (no problem there) but then he moves both our hands to behind his head for his comfort, but most definitely not for mine. Feel cruel slowly removing my hand but after a couple of seconds it does start to go numb! He really is so much more peaceful now when he sleeps - no tossing and turning but still the occasional funny one-sided conversation.
Before I left, he had his central line removed, a cannula put into his hand for drugs and a butterfly needle into his leg for his pca (his pain pump). Now he's got is own pj bottoms, so one leg has to be rolled up so the butterfly needle doesn't hurt.
The infection team came to have a look at Michael as well to find the best way of stopping these bugs breeding. They have now taken cultures from his hickman line (one in his chest for his tpn) as they think maybe bugs could be coming from there. We've been quite lucky that Michael's had no problems with his Hickman. Some people suffer constantly from infections and have to keep having them removed and replaced elsewhere. We've been really conscious of cleaning it properly and up till now have had no problems. All I can say is, as disgusting as I thought it would be having to clean the area where the lines goes in each week for Michael, I got over it and was vigilant in keeping it clean and infection free. But not even two weeks into being in hospital and it may be infected - obviously I need to give some training!! JOKING :)
Cultures takes 1 - 2 days to come back. If it is the Hickman line, then antibiotics for two weeks and if not, antibiotics for just one. Not sure if it comes back negative if they have to look for another area where the bugs are coming from - have to say I'm not entirely sure about this bug thing! Definitely one of those cases of asking questions, thinking you understand the answer and then realising you haven't a clue.
Feel like I haven't stopped this afternoon. Came home, picked up Nathan, dumped bags, had a quick snack, took Waffle to have his stitches out (so brave!), came home, had coffee, doing blog and now about to collect Lauren. Today is really one of those days where I'm feeling the strain of it all - really doesn't help that it's starting to get darker earlier, and the clocks haven't even gone back yet. After nearly two weeks I'm missing have Michael at home - can't believe a few weeks ago I was moaning he was always here. Some people are never satisfied!!
Bye for today. x
Thursday
Started my day taking Michael's car to check the tyres. His car eats less petrol than mine so I've been using it to drive back and forth. Michael checked all the tyres a few weeks ago but one started to look a little flat yesterday. I pumped it up but thought I'd better get it checked. There I was thinking I was going to have to fork out more money but they couldn't find anything wrong with it - gave it a thorough check but found nothing. Meanwhile, he didn't even charge me for checking. Makes a change!!
So how is the patient today? Not happy. He's just fed up of feeling lousy. It's not even the pain that's getting him down. He had another unsettled night - his temperature spiked; his catheter fell out and he said his nurse wasn't quick enough!! I guess when your in such a state, nobody could be quick enough.
He had a ct scan this morning to check the collections of fluid (the ones they washed out on Sunday). He also had cultures taken yesterday. Results show he's got bugs everywhere. They've now got to take out his central line - this is to stop the bugs spreading. Means he's got to have more drugs orally; muscular (injection) or through his stomach tube, and keep going with the antibiotics. It's just something else to get Michael down.
No idea whether the op on Sunday disturbed everything - guess the more I think about it the more conclusions I could come to. I feel totally confident that they're on top of things as he really is closely monitored. Maybe it's easier being here and listening first hand to the information. Just texted my mother-in-law and I can 'hear' her panic in her text response.
They're now going to give him his last lot of lines through his central line and then take it (and some bugs away).
Justine
read my blog:www.the-transplant-wife.blogspot.com
So how is the patient today? Not happy. He's just fed up of feeling lousy. It's not even the pain that's getting him down. He had another unsettled night - his temperature spiked; his catheter fell out and he said his nurse wasn't quick enough!! I guess when your in such a state, nobody could be quick enough.
He had a ct scan this morning to check the collections of fluid (the ones they washed out on Sunday). He also had cultures taken yesterday. Results show he's got bugs everywhere. They've now got to take out his central line - this is to stop the bugs spreading. Means he's got to have more drugs orally; muscular (injection) or through his stomach tube, and keep going with the antibiotics. It's just something else to get Michael down.
No idea whether the op on Sunday disturbed everything - guess the more I think about it the more conclusions I could come to. I feel totally confident that they're on top of things as he really is closely monitored. Maybe it's easier being here and listening first hand to the information. Just texted my mother-in-law and I can 'hear' her panic in her text response.
They're now going to give him his last lot of lines through his central line and then take it (and some bugs away).
Justine
read my blog:www.the-transplant-wife.blogspot.com
19 October 2011
Wednesday Evening
Although I didn't want to leave Michael this afternoon, I felt happier as he looked better than when I'd arrived, was definitely more alert and when sleeping was much more relaxed.
Good journey home again although when I neared my exit on the M40 there was a warning that there was major traffic on the M25. My problem was I am completely unaware of junction numbers - think I get off at 19 but really not sure. Anyway, took a gamble it was the other way (anti clockwise or not!!) And thankfully I was correct. It was major traffic going towards Heathrow. Think perhaps I need to be more 'junction aware'.
Had a very chilled evening. Very rarely have a bath (pong I hear u say!) and normally grab a shower. Whenever I do have a bath though, Michael has always run it in for me. Fancied a bath tonight but no Michael - I had to opt for second best and have to say Aaron did a pretty good job - perfect temperature and just enough bubbles. It's all those 'stupid' things that I look forward to - long way off I know :(
Night x
Justine
read my blog:www.the-transplant-wife.blogspot.com
Good journey home again although when I neared my exit on the M40 there was a warning that there was major traffic on the M25. My problem was I am completely unaware of junction numbers - think I get off at 19 but really not sure. Anyway, took a gamble it was the other way (anti clockwise or not!!) And thankfully I was correct. It was major traffic going towards Heathrow. Think perhaps I need to be more 'junction aware'.
Had a very chilled evening. Very rarely have a bath (pong I hear u say!) and normally grab a shower. Whenever I do have a bath though, Michael has always run it in for me. Fancied a bath tonight but no Michael - I had to opt for second best and have to say Aaron did a pretty good job - perfect temperature and just enough bubbles. It's all those 'stupid' things that I look forward to - long way off I know :(
Night x
Justine
read my blog:www.the-transplant-wife.blogspot.com
Wednesday :3.10 pm
Thankfully had a clear run on the motorways today and arrived about 12, just as Michael's parents and Grandma were about to leave. I believe he slept thru most of their visit (nothing personal I'm sure!).
So - where r we today? Still has the infection and is on 3 different antibiotics which usually take 48 hours to make a difference. Actually - he already looks a bit better.
Funny thing happened when the surgeon arrived today. My in-laws were still there and had never met him before. They had no idea who he was and when he asked how Michael was, they proceeded to tell him all about the infection, etc. Love to know what he thought. I think they were expecting someone older and perhaps more formal.
Anyway - Michael then had his first scope. Takes a long time to set the whole thing up but only takes a couple of mins to do. A long camera thingy (very technical) goes into the stoma and then u can see on the screen how the bowel looks. As bowels go, it was..... Interesting! All looked very healthy and surgeon very satisfied. A biopsy was taken as well to check for any signs of rejection. The surgeon said that as it looked so good, quite sure no rejection but obviously need to be doubly sure. I have really amazed myself that I haven't passed out (yet) with any of these procedures. Michael was definitely a bit nervous - worried it was going to be painful - but it was absolutely fine. This will now be done weekly.
We had a bit of quiet time and Michael was saying how he didn't really remember anything in ICU. I told him he even wrote a blog - no recollection at all!! Went through it all as best as I could (so glad we've both now got the blog to refer to) but he doesn't remember any of it. What he was saying was how after Sunday's op, he recalls his name being called to wake him up. It seemed like a long way away and he had to pass by Moses, Luke Skywalker (not sure he'd know what either of them look like) and then get on a jet plane to reach the voice. Quite a vision!
A short while later, the physio arrived (real time - not with Moses) and encouraged Michael to go for a walk. I really thought he was going to put her off till another time but I was impressed when he agreed. After the usual long winded process of unhooking everything, the walk began. Very slow - leaning on the drip stand for support. I would have liked to tell him 'bottom in, chest out, shoulders back' but thought better of that. At the end of the corridor, a nurse wheeled her chair down so he could have a bit of a rest. Then about turn and back to his bed. As much as he would have liked to go straight back to bed, he again forced himself to sit in the chair while his nurse administered his meds. Once he got back into bed - he fell asleep which is where we are now.
While watching him sleep, looks more like himself. All the extra fluid in his body as gone down. His arms and legs are back to their normal size - honestly a few days ago his limbs were so swollen. So peaceful now :)
Justine
read my blog:www.the-transplant-wife.blogspot.com
18 October 2011
Tuesday evening
Realised today how much blogging time I have when I'm at the hospital with Michael - those quiet moments when he's resting or just when he doesn't have the energy to be sociable. No such time today - the nurses gave me the all clear today to take the kids up to the hospital. Michael had told them he was up to it.
So we set off in the hope that the M25 and M40 would be accident and traffic free. Unfortunately, no such luck. Luckily for me, my friend (unlucky for her) had hit the M25 earlier than me (on a much more exciting shopping trip!) and texted me literally 2 mins before I was about to hit it. So, it was the scenic route again - just hoped I'd remember the way as I didn't have the map or the sat nav. Actually it wasn't too bad and we didn't get lost. Just a slightly longer journey and no sitting in traffic.
Michael was happy to see the children and they were really excited to see their Daddy. The amount of times they've been to different hospitals to visit him, they also find it quite exciting to see what his room is like (whether there's any nosh available). UCH was a ward, so they loved Oxford - a nice private room. It was a real effort for Michael - he was sitting in the chair when we arrived, pretty much covered up. I'm not sure if they could really see all the tubes being drained from different directions as they were strategically placed under the blanket. They did ask about the main line in Michael's neck as I guess that's in plain sight, but didn't really question anything else. I did give the wifely glare to Michael at one point, for him to make a little bit of an effort for the kids - it may sound harsh but I had said to him yesterday that he had to be 100% sure that he was up to seeing them. It was his decision and therefore he had to try and speak to them a little bit. I know he was very uncomfortable as the pain hasn't really subsided too much, and he's also now got an infection (apparently nothing serious - nothing unusual) for which he's now on antibiotics but suffering from being extremely hot. Maybe I was more conscious that I didn't want the kids to be too upset that Daddy wasn't in good form. Don' get me wrong, I didn't expect him to be laughing and joking and walking around but I wanted him to at least speak to the kids. Selfishly, I was going to be the one who had to deal with them being upset. Anyway, it turned out just fine - kids more than happy. They've had their 'Daddy fix' and I hope it cheered Michael up.
The drive home was the quickest. 45 mins. Think I may start to record my best times!
Tomorrow I'm back without the kids. They'll be having fun with their friends. I'll catch up in detail with what's happening with Michael - although I was there today, I didn't feel I could ask too much with the kids there. As I said when I wasn't there on Sunday, always feel like I have missed an awful lot just being absent for a day.
Night xx
So we set off in the hope that the M25 and M40 would be accident and traffic free. Unfortunately, no such luck. Luckily for me, my friend (unlucky for her) had hit the M25 earlier than me (on a much more exciting shopping trip!) and texted me literally 2 mins before I was about to hit it. So, it was the scenic route again - just hoped I'd remember the way as I didn't have the map or the sat nav. Actually it wasn't too bad and we didn't get lost. Just a slightly longer journey and no sitting in traffic.
Michael was happy to see the children and they were really excited to see their Daddy. The amount of times they've been to different hospitals to visit him, they also find it quite exciting to see what his room is like (whether there's any nosh available). UCH was a ward, so they loved Oxford - a nice private room. It was a real effort for Michael - he was sitting in the chair when we arrived, pretty much covered up. I'm not sure if they could really see all the tubes being drained from different directions as they were strategically placed under the blanket. They did ask about the main line in Michael's neck as I guess that's in plain sight, but didn't really question anything else. I did give the wifely glare to Michael at one point, for him to make a little bit of an effort for the kids - it may sound harsh but I had said to him yesterday that he had to be 100% sure that he was up to seeing them. It was his decision and therefore he had to try and speak to them a little bit. I know he was very uncomfortable as the pain hasn't really subsided too much, and he's also now got an infection (apparently nothing serious - nothing unusual) for which he's now on antibiotics but suffering from being extremely hot. Maybe I was more conscious that I didn't want the kids to be too upset that Daddy wasn't in good form. Don' get me wrong, I didn't expect him to be laughing and joking and walking around but I wanted him to at least speak to the kids. Selfishly, I was going to be the one who had to deal with them being upset. Anyway, it turned out just fine - kids more than happy. They've had their 'Daddy fix' and I hope it cheered Michael up.
The drive home was the quickest. 45 mins. Think I may start to record my best times!
Tomorrow I'm back without the kids. They'll be having fun with their friends. I'll catch up in detail with what's happening with Michael - although I was there today, I didn't feel I could ask too much with the kids there. As I said when I wasn't there on Sunday, always feel like I have missed an awful lot just being absent for a day.
Night xx
Monday Evening
Well I managed my first day of commuting. Worked out ok, and it was lovely to have a meal waiting as I was somewhat knackered. Yet again, our amazing friends and family have come up trumps - and a meal rota has been set up (thank you to those concerned!) so the kids and I don't starve. It's just one less thing to have to worry about, when the list of worries seems to be getting longer.
Left Michael sleeping at around 4pm. He's quite fussy in how he likes everything laid out - all in it's correct place. He had his three drinks lined up (no one makes Ribena like me), TV control a hand's distance away, pain control button in one hand and nurse call button in the other.
At one point this afternoon, Michael was going for another walk with the physio. She moved all his cables/drip lines etc, Michael sat on the edge of the bed, raring to go (not!) and then his pain relief buzzed that it had run out. He really needs that, particularly when exerting himself, so a nurse was called to change the pump. His regular nurse was at lunch and while we waiting for another nurse, Michael became too uncomfortable to sit there any longer and laid back down. The physio then decided to come back a bit later. By the time the pump was changed, the physio was long gone and Michael decided the moment had passed and he just wanted to rest. Whether the physio returned after I left, who knows?
I am hoping to take the kids up tomorrow but I have agreed with Michael that I will call and speak to his nurse first thing and he has to be absolutely positive that he is up to it. Would be good for both the kids and Michael but it's pointless if Michael's not up to it. We'll see what the morning brings.
The kids and I spent the evening catching up on Dr Who. Michael never watches anything sci-fi. Just doesn't get it, so while he's away we can get up to date. Well, I have to say how extremely disappointing - for any of you who do watch it, did you also not really care if he died? We were hoping he would die and regenerate into David Tennant. 'Bring back David Tennant' and stop making such stupid incomprehensible story lines. I can't believe I'm so glad the series is over. Sorry - not sure why I'm ranting about a TV programme.
Hoping tomorrow the motorways will be better. As beautiful as the scenic route was, just so much easier following the motorway.
Left Michael sleeping at around 4pm. He's quite fussy in how he likes everything laid out - all in it's correct place. He had his three drinks lined up (no one makes Ribena like me), TV control a hand's distance away, pain control button in one hand and nurse call button in the other.
At one point this afternoon, Michael was going for another walk with the physio. She moved all his cables/drip lines etc, Michael sat on the edge of the bed, raring to go (not!) and then his pain relief buzzed that it had run out. He really needs that, particularly when exerting himself, so a nurse was called to change the pump. His regular nurse was at lunch and while we waiting for another nurse, Michael became too uncomfortable to sit there any longer and laid back down. The physio then decided to come back a bit later. By the time the pump was changed, the physio was long gone and Michael decided the moment had passed and he just wanted to rest. Whether the physio returned after I left, who knows?
I am hoping to take the kids up tomorrow but I have agreed with Michael that I will call and speak to his nurse first thing and he has to be absolutely positive that he is up to it. Would be good for both the kids and Michael but it's pointless if Michael's not up to it. We'll see what the morning brings.
The kids and I spent the evening catching up on Dr Who. Michael never watches anything sci-fi. Just doesn't get it, so while he's away we can get up to date. Well, I have to say how extremely disappointing - for any of you who do watch it, did you also not really care if he died? We were hoping he would die and regenerate into David Tennant. 'Bring back David Tennant' and stop making such stupid incomprehensible story lines. I can't believe I'm so glad the series is over. Sorry - not sure why I'm ranting about a TV programme.
Hoping tomorrow the motorways will be better. As beautiful as the scenic route was, just so much easier following the motorway.
17 October 2011
Really hope u can see this message!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Monday lunchtime
Surgeon has just paid Michael a visit. The surgery yesterday was essential - a collection of blood had formed into an abscess and that was what leaking. Everything else looked really good (well as good as internal organs can look). He's now been stitched up rather than stapled as before. This is to ensure that no other leakage can seep through the skin opening. Now the wound is tightly sealed. The drain tube is placed just under the skin in order to stop anything that may leak and cause the wound to redden (this is what happened before - on Saturday his wound started to get quite red from the leakage).
Not sure that all makes sense. Sat there intently, taking all the information in and then the moment he walks out, its a bit of a blur!
The plan of action is now to get down on the opiates; get rid of the catheter (tomorrow) and keep walking (obviously not constantly!!); no more drip fluids. May go back on the tube feed tomorrow, and hopefully if that works better now, increase it and reduce tpn. Nurse has just come in and just told Michael that he's also now to start some of his meds orally. Michael not thrilled at the prospect but realises it's another step forward. The aim is also to get rid of the neck line that's presently used for bloods, etc, by the end of the week, so really important to start doing things orally.
Can u believe that as yuck as Michael feels, he still believes I'm stupid. Obviously when the nurse is in the room, I wouldn't be able to use my initiative and move out of her way. Thankfully Michael is there to constantly remind.
I have to say that it's so refreshing that the Team are so proactive and keep everything moving and progressing. Unfortunately we've had a lot of experience in the past of 'let's just wait and see' and a week goes by with nothing happening. Feel a bit happier than I did this morning.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Not sure that all makes sense. Sat there intently, taking all the information in and then the moment he walks out, its a bit of a blur!
The plan of action is now to get down on the opiates; get rid of the catheter (tomorrow) and keep walking (obviously not constantly!!); no more drip fluids. May go back on the tube feed tomorrow, and hopefully if that works better now, increase it and reduce tpn. Nurse has just come in and just told Michael that he's also now to start some of his meds orally. Michael not thrilled at the prospect but realises it's another step forward. The aim is also to get rid of the neck line that's presently used for bloods, etc, by the end of the week, so really important to start doing things orally.
Can u believe that as yuck as Michael feels, he still believes I'm stupid. Obviously when the nurse is in the room, I wouldn't be able to use my initiative and move out of her way. Thankfully Michael is there to constantly remind.
I have to say that it's so refreshing that the Team are so proactive and keep everything moving and progressing. Unfortunately we've had a lot of experience in the past of 'let's just wait and see' and a week goes by with nothing happening. Feel a bit happier than I did this morning.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Monday morning
Not the best start to the day. Woke up to the traffic report telling me major traffic on the M25 and M40 - brilliant! Looked on line which said M40 traffic not likely to clear til midday - even better news!!
Downloaded route avoiding motorways as our stupid sat nav refuses to avoid motorways. Had a lovely scenic drive - actually quite beautiful - and it only took about 15 mins longer than usual. I'd like to say it was a real struggle without Michael figuring out where I was going but to be honest, Michael's sense of direction has never been up to much.
Before I arrived, Michael had already been for a walk up the corridor and had seen various medical staff, and was naturally exhausted.
So now I've got to remember what's ther latest..... One day off and so much changes. All the gunk was washed out, but they had to make the incision up his body slightly higher. He's now got a different drain in his wound which somehow suctions out rather than the free flow that he had before. Still got the drain on his tube that goes in his stomach and he's back with a catheter. Pretty frustrating as his body had just got over the last op and anaesthesic and now his back there again. His pain relief has also now changed - fentanyl patches have been removed and his gone back onto diazapan (much lower dosage than last time) and he's still got his pump, which has also got a steady flow of pain relief going through.
I stupidly thought that cause he wasn't going to be under for too long yesterday that he'd actually be a little better today. Not that he's bad but I sort of expected more. Somehow I thought that 'the surprise' on Saturday would mean things would move along quicker now - but that's just naïve:(
Michael's quite restful now although does keep waking as his tummy feels so sore - couldn't tell u where as he's now got so many tubes and plasters, couldn't possibly know where it hurts.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Downloaded route avoiding motorways as our stupid sat nav refuses to avoid motorways. Had a lovely scenic drive - actually quite beautiful - and it only took about 15 mins longer than usual. I'd like to say it was a real struggle without Michael figuring out where I was going but to be honest, Michael's sense of direction has never been up to much.
Before I arrived, Michael had already been for a walk up the corridor and had seen various medical staff, and was naturally exhausted.
So now I've got to remember what's ther latest..... One day off and so much changes. All the gunk was washed out, but they had to make the incision up his body slightly higher. He's now got a different drain in his wound which somehow suctions out rather than the free flow that he had before. Still got the drain on his tube that goes in his stomach and he's back with a catheter. Pretty frustrating as his body had just got over the last op and anaesthesic and now his back there again. His pain relief has also now changed - fentanyl patches have been removed and his gone back onto diazapan (much lower dosage than last time) and he's still got his pump, which has also got a steady flow of pain relief going through.
I stupidly thought that cause he wasn't going to be under for too long yesterday that he'd actually be a little better today. Not that he's bad but I sort of expected more. Somehow I thought that 'the surprise' on Saturday would mean things would move along quicker now - but that's just naïve:(
Michael's quite restful now although does keep waking as his tummy feels so sore - couldn't tell u where as he's now got so many tubes and plasters, couldn't possibly know where it hurts.
Justine
read my blog:www.the-transplant-wife.blogspot.com
16 October 2011
Sunday : 9.42 pm
Just spoken to Michael's nurse, although not really any the wiser. When his parents left him this afternoon he was still in pain and still very sleepy from the op. When I spoke to the nurse, he was still sleeping and in pain. I asked if the pain was from the today's op but not sure she knew what I was asking, so I no nothing. It's so frustrating not knowing exactly what's going on. Hopefully Michael will be up to using his mobile soon and then I can be in constant contact when I'm not around. I know he completely understands that I had to spend some time with the children, and he wanted me too but it doesn't make it any easier not being there.
It was lovely being with the kids today. When I came home on Wednesday it was just too rushed and I felt like I was pushing them out of the house on Thursday morning so I could go to Oxford. In reality, if they hadn't got up so late on Thursday, maybe it wouldn't have felt so rushed but that's teenagers for you.
Back to Oxford tomorrow for the day. The kids are all sorted, and then I'll be back for supper tomorrow. At least I'll spend the evening with them, although I'm guessing that once they've been home for a few nights, the homesickness will be long forgotten and they'll be ready for more sleepovers! Really hope that Michael's up for a visit from them soon - they don't entirely understand why others (only his parents and sister) have been and they can't. They'd find it more difficult to go all that way and see him for only a couple of minutes, before he fell asleep. That's if he was awake in the first place, as his parents discovered today. If he's back on track tomorrow, I'm hoping Tuesday will be good.
I may not always text back or return calls (did have all good intentions today but I guess I was too wrapped up in doing nothing much!) but I really value all the messages - your cointnued support has been overwhelming. THANK YOU xx
It was lovely being with the kids today. When I came home on Wednesday it was just too rushed and I felt like I was pushing them out of the house on Thursday morning so I could go to Oxford. In reality, if they hadn't got up so late on Thursday, maybe it wouldn't have felt so rushed but that's teenagers for you.
Back to Oxford tomorrow for the day. The kids are all sorted, and then I'll be back for supper tomorrow. At least I'll spend the evening with them, although I'm guessing that once they've been home for a few nights, the homesickness will be long forgotten and they'll be ready for more sleepovers! Really hope that Michael's up for a visit from them soon - they don't entirely understand why others (only his parents and sister) have been and they can't. They'd find it more difficult to go all that way and see him for only a couple of minutes, before he fell asleep. That's if he was awake in the first place, as his parents discovered today. If he's back on track tomorrow, I'm hoping Tuesday will be good.
I may not always text back or return calls (did have all good intentions today but I guess I was too wrapped up in doing nothing much!) but I really value all the messages - your cointnued support has been overwhelming. THANK YOU xx
Sunday : 3.10pm
Sitting in the cinema with the kids waiting for the film to start. Its been a pretty relaxing morning. Took Lauren to her Les Mis rehearsal in Hemel Hemspstead (contact Boxmoor Playhouse for tickets!) And then just spent morning tidying house up. Not quite sure that's classified as quality time with kids but sure made me feel better. Actually removed the drip stand and Michael's med table and tpn rucksack to the garage. Hoping they won't have to return. All that needs to go now is his drawer of drugs - hopefully in time that will also go but meanwhile looks a bit more like our old bedroom!!
Nathan also gave his room a mass clear out. A lot of his horse pictures came off the wall - think it's his way of telling me how desperate he is for his room to be decorated and he wants something more grown up. He'll have to wait a bit longer for that. Maybe in a few months it'll be another therapeutic task for me!
Michael's back from theatre now, being 'nursed' by his parents. As well as having a bit of 'wash out' he also had a new line put in his neck. It's not good to have it in longer than a week because of risk of infection. Apparently he's in a bit of pain - and I'm not there :(
Spoke to the Surgeon yesterday who explained the mystery. Michael's bowel is all connected up to work properly and the stoma is for easy access for them to check that everything is healthy and doing as it should. And then hopefully in a year, the stoma will be closed up.
Ooooh - Three Muskateers about to start. Will I get thru it without falling asleep?
Justine
read my blog:www.the-transplant-wife.blogspot.com
Nathan also gave his room a mass clear out. A lot of his horse pictures came off the wall - think it's his way of telling me how desperate he is for his room to be decorated and he wants something more grown up. He'll have to wait a bit longer for that. Maybe in a few months it'll be another therapeutic task for me!
Michael's back from theatre now, being 'nursed' by his parents. As well as having a bit of 'wash out' he also had a new line put in his neck. It's not good to have it in longer than a week because of risk of infection. Apparently he's in a bit of pain - and I'm not there :(
Spoke to the Surgeon yesterday who explained the mystery. Michael's bowel is all connected up to work properly and the stoma is for easy access for them to check that everything is healthy and doing as it should. And then hopefully in a year, the stoma will be closed up.
Ooooh - Three Muskateers about to start. Will I get thru it without falling asleep?
Justine
read my blog:www.the-transplant-wife.blogspot.com
15 October 2011
Day 7 : 6.30pm
Just walking to car - so nice to get some fresh air. Going home to be with kids - really miss them. Feel bad about going as the surgeon came in about 1 hour ago and has decided to do a quick unzipping tomorrow to clear out gunk that's around his bowel and weeping out his wound. He's told us its nothing to worry about - it will be very quick and hopefully help Michael to start feeling better.
I'd already told boys coming home and my first thought was 'how do I tell them I'm not' but then realised it was silly to stay - I can't do anything whilst he's in theatre anyway. Hopefully by the afternoon he'll be feeling better, although unfortunately still not good enough to see the kids.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 7 : 4.45 pm
Great news - Michael's bowels have opened. First time in 18 months!!! (Apologies I know this is a bit toooo much information).
It's such a wow moment but also we're both a bit confused. What's the stoma for? No one around to ask at the moment.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 7 : 2.40pm
Full of blog today but a lot seems to happening and this is as much for Michael (when he's up to it) so he's got a diary as well as for my sanity.
Michael's more or less sorted - cables all in their correct place since returning from his scan. His lovely nurse had to dash out to help someone out, at which point someone's panic button went off and a commotion started - people running and calling out various (medical things). Very 'Holby City'. I closed the door and we both tried to ignore what was going on.
No idea what's happened but meanwhile all seems to have calmed down. Meanwhile, Michael was having another anxious moment, and can't get comfortable. Now his wound has started to leak so all I can do it put layers of tissue on top of the dressing; his tpn has got air into the lead and the alarm keeps sounding and various other beeps as he's not fully hooked back to things.
Nurse now back and sorting him out. This is not a good day - think I need something stronger than tea :(
Justine
read my blog:www.the-transplant-wife.blogspot.com
Michael's more or less sorted - cables all in their correct place since returning from his scan. His lovely nurse had to dash out to help someone out, at which point someone's panic button went off and a commotion started - people running and calling out various (medical things). Very 'Holby City'. I closed the door and we both tried to ignore what was going on.
No idea what's happened but meanwhile all seems to have calmed down. Meanwhile, Michael was having another anxious moment, and can't get comfortable. Now his wound has started to leak so all I can do it put layers of tissue on top of the dressing; his tpn has got air into the lead and the alarm keeps sounding and various other beeps as he's not fully hooked back to things.
Nurse now back and sorting him out. This is not a good day - think I need something stronger than tea :(
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 7 : 2.10 pm
Message from Michael - 'hardest battle ever'.
Just back in room. Had scan - contrast all gone - having another anti sickness. Hope that will help him sleep for a bit!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Ahhh tea!
Feel a bit better now, although I was a bit perturbed in the cafe (more like a school kanteen) when one of the staff told me I wasn't allowed to sit where I'd chosen. Being a weekend, it's very quiet (or maybe that's just cause of the food they serve!) So they've left a lot of chairs on tables and used some as barriers to stop u sitting in certain places. Sunny day and needed some fresh air so I chose the seat nearest the garden, where the door was open. The chair wasn't on the table and no make shift barrier. Thought I was safe but alas no "you can't sit there". I just cannot believe some people's mentality. Talk about jobsworth. If I had the energy I should have played the old 'my husband's had a bowel transplant' card and maybe I could have had the seat of my choice!!! Maybe I'll move when they're not watching.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 7 : 1.00 pm
(I started this blog at 10.10 but it's taken ages to write). Michael's just having a wash, while I sit here and (I'm too slow at typing as he's already back in bed).
It's now 10.40 and thankfully he's now calm. Feeling so very bloated. And doesn't know what to do with himself. Keeps getting himself into a bit of a state. Was a little bit sick but having had his anti sickness, now sleeping. He says he didn't sleep during the night and when I got here he was in the chair as that was a little more comfortable.
It's 12.20 and the morning has been a bit of a blur. Michael's only slept for short bursts and in between has been moaning in pain. I have never seen anyone move around so much in the bed. I've been doing my duties as instructed by the patient - 'bed up; bed down; ribena; lemon squash; fan on; fan off; sheet on; sheet off; sick bowel; want to sit on side of bed; want to go back to bed; And so it goes on. Just haven't had time to blog!!
The surgeon has been in and is very happy with how Michael is progressing. Obviously Michael is very polite - no groaning whatsoever. He does obviously tell him how awful he's feeling but his behaviour is impeccable!
Whilst I'm writing Michael is extremely anxious. He is about to have a scan and has to have dye (1000ml) put through his stomach tube. Half has gone in and he's feeling the sickness. He has asked for an anti sickness injection which is coming - and has been coming for around 10 mins. So he is extremely anxious. This contrast is meant to have all been put in now and no ones around, he's more fretful and I feel like running away.
Nurse now back and giving anti sickness and I guess about to put more contrast in. Michael just asked me if they could put him to sleep for a week :( Not happy now she's putting more contrast in.
Something to make u laugh. With all dignity long gone - Michael keeps going from hot to cold so the fans on and off. Now he's suffering with a very hot bottom (I guess from always sitting on it). So in one of his moments of madness, he jumps out of bed, with his fashionable gown open at the back, bottom facing door for all to see - and tells me to put the fan on to cool his bottom. Job done - and back on the bed and thankfully no one walked past.
Now he's stressed and feeling sick and I'm.... more stressed just without the sickness. Porters are here to take him to have the scan and now it's time to sort all the leads - it's all so time consuming and I know Michael just wants the scan so all the contrast can be aspirated out. Honestly, you can't imagine the tension in the room - stressed patient and wife, over stretched nurse and one calm porter.
Really need a sweet cup of tea.
Justine
read my blog:www.the-transplant-wife.blogspot.com
14 October 2011
5.25 pm
Feel completely useless. Poor Michael is getting so distressed with his bloated tummy - very very uncomfortable for him and there is no pain relief that will help. Keeps waking up from his fitful sleep, asking if it's time for his pain relief or anti-sickness. I have to keep reminding him that his pain relief is constant and there's nothing more the nurses can give. And he doesn't actually feel sick at the moment - he just feels he needs/wants something. And so he tries to sleep :( The nurse is going to try and aspirate (drain) his tummy tube in a short while to c if that helps. Just done - quite a bit if bile came out - Michael's now feeling more comfortable and has now gone back to a more restful sleep. They believe this is all down to the opiates. His old bowel was used to them - obviously his new one isn't. So its really important to wean him off.
Meanwhile, I'm sitting here feeling quite useless. I know he likes me to sit with him, and be there when he wakes up but it's awful not actually being able to make him feel better.
I have though added some more experience to my nursing skills. Watched his stoma being cleaned and changed today. Actually quite easy - not disimilar from when I clean his hickman line (where his tpn goes in). In fact, looks easier as it doesn't seem to be an aseptic (sterile) technique. Have to admit, did feel a bit light headed (true to form as always) but then I did when shown the hickman line so I'm sure we'll both eventually get used to it.
He now looks very relaxed - arm bent under head, legs splayed in different directions. Not sure it's a good position to be in - but he's happy.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Meanwhile, I'm sitting here feeling quite useless. I know he likes me to sit with him, and be there when he wakes up but it's awful not actually being able to make him feel better.
I have though added some more experience to my nursing skills. Watched his stoma being cleaned and changed today. Actually quite easy - not disimilar from when I clean his hickman line (where his tpn goes in). In fact, looks easier as it doesn't seem to be an aseptic (sterile) technique. Have to admit, did feel a bit light headed (true to form as always) but then I did when shown the hickman line so I'm sure we'll both eventually get used to it.
He now looks very relaxed - arm bent under head, legs splayed in different directions. Not sure it's a good position to be in - but he's happy.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 6 : 4.10 pm
Michael's asleep having had a small walk along the corridor. Again, he has slept a lot during the day and really had to push himself to do the walk. Now I had asked his permission to blog the next bit and he has consented......
So we're (Michael, nurse and I) half way up the corridor and he gets a little way up and needs to sit down and rest. So I get him a chair and then he needs the loo. So I run back to the room to get a bottle. Michael then sits on the chair, doing what he needs to do, while the nurse and I try and stand in front of him to keep his dignity (although I think by telling u that, he's now lost it). Thankfully there was no one else around. To be honest, with a bowel condition, Michael lost his dignity a long time ago and I guess you've just got to see the funny side.
He made it back to the room, exhausted. Another 10 mins of re-sorting all his lines, and back to sleep......
Justine
read my blog:www.the-transplant-wife.blogspot.com
Typo!
Last blog was from me - not Michael. His name is there as I sent it from his phone! Hoping he'll soon be up to blogging himself!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 6 : 10.40 am
Really can't believe it's nearly been a week.
Michael is now sleeping peacefully, even though it was me that was woken 6 times last night by Whitney Houston & Mariah Carey gently singing in my ear. My daughter's ring tone!!!! Just to tell me she couldn't sleep. The title was apt 'Miracles' because it truly was a miracle that I didn't lose my temper. I think the firm (but loving) 'go to sleep and I won't be answering the phone again' worked. I know there's a lot going through her mind at the moment and I know it was unsettling for her to have one night at home and then off again, and I do feel guilty but I need my sleep.
Michael's had a wash and shave this morning, and sat in the chair. Physio is coming back later so he can go for a walk round the ward. There's always about 10 mins preparation for him to get out of bed as he's attached to so many monitors, drips, etc. If he's not careful he could either pull something out or strangle himself!!
Michael's pain relief is due to be reduced today. He's on fentanyl patches and those r going down to 100 mg from150 mg. He'll still have his pump that he can press when needed. It's getting a balance of him being comfortable and not having too many opiates which do slow down bowel function. As yet bowel hasn't started to work. He's therefore feeling very bloated (feel like we've been here before - seems to be a repeat of all Michael's surgeries) and there's not any pain relief which would help with that feeling. He is doing so well though - and his progress in one week has been amazing. As always with Michael, he's pushing himself (even though he's just turned to physio away) and a little progress each day is the way to go.
Michael Seres
Michael is now sleeping peacefully, even though it was me that was woken 6 times last night by Whitney Houston & Mariah Carey gently singing in my ear. My daughter's ring tone!!!! Just to tell me she couldn't sleep. The title was apt 'Miracles' because it truly was a miracle that I didn't lose my temper. I think the firm (but loving) 'go to sleep and I won't be answering the phone again' worked. I know there's a lot going through her mind at the moment and I know it was unsettling for her to have one night at home and then off again, and I do feel guilty but I need my sleep.
Michael's had a wash and shave this morning, and sat in the chair. Physio is coming back later so he can go for a walk round the ward. There's always about 10 mins preparation for him to get out of bed as he's attached to so many monitors, drips, etc. If he's not careful he could either pull something out or strangle himself!!
Michael's pain relief is due to be reduced today. He's on fentanyl patches and those r going down to 100 mg from150 mg. He'll still have his pump that he can press when needed. It's getting a balance of him being comfortable and not having too many opiates which do slow down bowel function. As yet bowel hasn't started to work. He's therefore feeling very bloated (feel like we've been here before - seems to be a repeat of all Michael's surgeries) and there's not any pain relief which would help with that feeling. He is doing so well though - and his progress in one week has been amazing. As always with Michael, he's pushing himself (even though he's just turned to physio away) and a little progress each day is the way to go.
Michael Seres
13 October 2011
Day 5 : 9.15 pm
The end of a another day and it feels like progress has been made. Michael worked really hard today and, his reward...... sleep.
Got himself worked up about 40 mins ago. Wanted his meds and started to become very aggitated. Also stressing about going to the loo (can't believe I'm discussing his toilet regime!). Apparently after you have a catheter removed, it's quite painful, and he's suffering. I didn't realise but the reason they took it out was because he was getting bladder spasms, which was made worse from the catheter balloon (that's what stops the catheter from falling out). Thankfully this means the pain has stopped. Unfortunately everything has a downside. Anyway, he's now had his bed tidied up and he's all calm and restful.
Michael has had the most wonderful nurse. No names mentioned, but you know who you are. Makes a real difference to have a male nurse when they're having to deal with such personal needs, and Michael really was in capable hands. Shame is, he's now off for a week or so. I have to say though that so far all the staff have been amazing so sure all will be good tomorrow. I just always remember in UCH, Michael just getting used to one nurse and then the shifts would all change :(
Had a really interesting talk today with another transplant recipient. She was one of the first to have a bowel transplant in the UK, approx 2 years ago. Fascinating listening, and being able to ask all those questions that really nobody but someone who's been through it could answer. She looked really well and her life is normal (whatever normal is). Wow - someone who's been through it all and come out the other side. Just so exciting to see - gave me a really boost that our life can also be normal one day. Feels like a long time ago we ever had a regular life. I know its a long way off but seeing someone who really has got a new life was so very comforting, inspiring.... just so wonderful.
You'll all laugh but my next task is to ensure the flat is more welcoming when Michael does eventually get there. Before I make any comments, I apologise in advance if anyone who is reading this actually looks after the flat. Maybe I'm a bit fussy, but the more time I spend there (and it really is for short periods), I notice more. Not sure when the toilet walls were washed; loo hasn't had a thorough clean in a while (well, it has now); I could go on but I guess that's quite sad!! It's just not a bright and airy space that anyone could spend too much time in without feeling depressed. So I'm thinking of getting in contact with 60 Minute Makeover. No seriously, I think I'll have to attack with a bucket of bleach, lots of air freshener, some brighter light bulbs, funky duvet., posters on the walls. Somehow got to give it a new lease of life.
Well it's now time to go back to the flat. Feel awful now that I've been so rude about it. It's so helpful being able to use it - I so appreciate being 5 mins away......
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 5 : 4.10 pm
Not sure if this is cruel to be posting, but made me laugh. Now that Michael's catheter has been removed he's obviously got to pee in the conventional way. The shame is, his tpn feed has always made him go a lot and at the moment he can't get out of bed the whole time. So meanwhile he's lying on his bed, hand constantly clutched to his cardboard bottle - just in case. He's now having an xray - just to check all is ok in his bowel - and he's lying there, still with the bottle tightly in his grip. I look forward to the time when he can keep racing to the bathroom!!
Justine
read my blog:www.the-transplant-wife.blogspot.com
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 5 : 3.15 pm
1 hour in Radlett, the next in Oxford. Was really lovely seeing the kids but it was hard then having to 'dump' them again. They've been amazing, and I've been as open with them as I can about Daddy but I know they're desperate to see him. Hopefully he'll be up to it this weekend. I felt like I should have be spoiling them while I was home, but the truth was I was knackered and there really wasn't that much time. Guess vegging together is just as good!
One thing's for sure, it's just so lovely to sleep in your own bed. Had a fabulous night's sleep - as I couldn't bring the bed with to Oxford brought second best - the pillow :)
A lot has moved on since I last saw Michael. I hadn't phoned the hospital - I knew if there was anything major I'd be contacted and I wanted to concentrate on the kids for the short time I was with them. He's had an amazing day. Been out of bed, for a walk along the corridor; sat in a chair; catheter is out; nose tube is out and now he's just started to be fed through his stomach tube. Can't remember if I've already said, but he went back on his tpn feed on Monday as obviously he needs 'food'. Today's feed is very slow - 100 ml of what looks like split pea soup (completely blended - no lumps!!). It's a big step and we'll c how he copes.
For now he's fast asleep. Must feel like he's run a marathon today.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
One thing's for sure, it's just so lovely to sleep in your own bed. Had a fabulous night's sleep - as I couldn't bring the bed with to Oxford brought second best - the pillow :)
A lot has moved on since I last saw Michael. I hadn't phoned the hospital - I knew if there was anything major I'd be contacted and I wanted to concentrate on the kids for the short time I was with them. He's had an amazing day. Been out of bed, for a walk along the corridor; sat in a chair; catheter is out; nose tube is out and now he's just started to be fed through his stomach tube. Can't remember if I've already said, but he went back on his tpn feed on Monday as obviously he needs 'food'. Today's feed is very slow - 100 ml of what looks like split pea soup (completely blended - no lumps!!). It's a big step and we'll c how he copes.
For now he's fast asleep. Must feel like he's run a marathon today.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
12 October 2011
Day 4 : 10.40 pm
Just a quick entry tonight. Home - and can't wait to fall asleep in my lovely comfy bed that I haven't seen for so long.
It's been so lovely to see the kids but has made me realise how hard the next months r going to be. We really did nothing very much but I was just happy to be with them and, although they knew it was only for a short time, they loved being home. Nothing like your own bed.
I really would have loved to jump into bed at 8 but dragged myself along until now. I realised that it was so much easier just having to worry about Michael, and just have the short walk back to my room. But that can't carry on indefinitely as the kids need some sort of stability. So from next week I'll be 'commuting' so the kids can stay at home. There may be some nights where I'll stay over, but generally I'll come back to my comfy bed.
Really hope Michael's doing ok. Hate not being there.
Sleep is calling. Night xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
It's been so lovely to see the kids but has made me realise how hard the next months r going to be. We really did nothing very much but I was just happy to be with them and, although they knew it was only for a short time, they loved being home. Nothing like your own bed.
I really would have loved to jump into bed at 8 but dragged myself along until now. I realised that it was so much easier just having to worry about Michael, and just have the short walk back to my room. But that can't carry on indefinitely as the kids need some sort of stability. So from next week I'll be 'commuting' so the kids can stay at home. There may be some nights where I'll stay over, but generally I'll come back to my comfy bed.
Really hope Michael's doing ok. Hate not being there.
Sleep is calling. Night xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 4 : 1.10 pm
Thankfully Michael's now resting again. Had a stressy period. Enteral feed nurse came round (that's the feed that goes through a tube in the tummy directly into the stomach). His tube, which he had put in a year ago for drainage, was looking a bt clogged up so it was decided to syringe some water through it to clear it out. All very easy but then Michael, who had been sleeping, felt terribly nausias and got himself into a bit of a state. As the anti-sickness was given there was a sigh of relief (from me) and Michael went back into his dream world.
No more than 10 mins later, he again felt extremely sick, becoming more aggitated and really not knowing what to do with himself. Horrible to see someone in such a state and not really being able to do anything other than giving comforting (but useless) words. The next anti-sickness did the trick and again he's calm and resting. Not sure if the whole episode was due to the water going into the tube.
The plan of action is now to get him off the diazapan so he is more alert and can then get moving. Bit of a vicious circle - needs the pain relief, that makes him drowsy, isn't able to move, which stops gut moving, which makes him feel sick........... And so it goes on.
I'm about to leave and drive home - feeling terrible guilty. Come to the realisation though that whenever I come home, I'll feel guilty!!
Hoping I'll find him much improved on my return.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
No more than 10 mins later, he again felt extremely sick, becoming more aggitated and really not knowing what to do with himself. Horrible to see someone in such a state and not really being able to do anything other than giving comforting (but useless) words. The next anti-sickness did the trick and again he's calm and resting. Not sure if the whole episode was due to the water going into the tube.
The plan of action is now to get him off the diazapan so he is more alert and can then get moving. Bit of a vicious circle - needs the pain relief, that makes him drowsy, isn't able to move, which stops gut moving, which makes him feel sick........... And so it goes on.
I'm about to leave and drive home - feeling terrible guilty. Come to the realisation though that whenever I come home, I'll feel guilty!!
Hoping I'll find him much improved on my return.
xx
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 4 : 9.35 am
After another bad night sleep, having been woken by the dustmen, I'm now back with Michael. He said he didn't sleep that well but looking at him now I'm not sure he'd have known what was going on. The diazapan is completely knocking him out - fabulous for the pain but not going to help him get mobile.
The doctors have now spoken about perhaps giving it to him orally as it doesn't have such a severe effect. I didn't realise that yesterday when I nipped off for lunch, and he was still very sleepy, he'd had another shot of diazapan - no wonder he was such a terrible host for the rest of the day. Today they're just going to monitor how he is b4 decided to give him another dose.
My aim is to leave Oxford around lunchtime today and be with the kids. He's not up to seeing them yet so I may come back on my own tomorrow sometime and then maybe he'll be up for them to visit over the weekend. Who knows - it really is one day - actually more like 1 hour - at a time.
Justine
read my blog:www.the-transplant-wife.blogspot.com
The doctors have now spoken about perhaps giving it to him orally as it doesn't have such a severe effect. I didn't realise that yesterday when I nipped off for lunch, and he was still very sleepy, he'd had another shot of diazapan - no wonder he was such a terrible host for the rest of the day. Today they're just going to monitor how he is b4 decided to give him another dose.
My aim is to leave Oxford around lunchtime today and be with the kids. He's not up to seeing them yet so I may come back on my own tomorrow sometime and then maybe he'll be up for them to visit over the weekend. Who knows - it really is one day - actually more like 1 hour - at a time.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Blackberry!!!
Really doesn't help that Blackberry is not working. Have no idea if blogs r being posted. Apologies if some have been posted more than once - the emails keep saying they've been sent and 10 mins later say they haven't!! Is it time for an iphone?!?
Justine
read my blog:www.the-transplant-wife.blogspot.com
11 October 2011
Day 3 : 8.30 pm
Feel like a may be coming down with a cold. Hope its just sniffles from the hospital environment and the fan constantly being on (Michael's constantly hot). That's all I need!
Just waiting for them to move Michael onto a blow up mattress - softer on his bottom!! Been talking about it for hours and now they're doing it. Mattress blown up, staff vanished as they're looking for helpers. Michael has promised the surgeon he'll sit on the side of the bed when he's moved. Not sure that's going to happen as Michael's 'passed out' on the bed. I also promised I'd ensure he did it. I'll let u know.
Nurses here now - and Michael's not happy.......
Justine
read my blog:www.the-transplant-wife.blogspot.com
Day 3 : 5.40 pm
Surgeon came to check on Michael. Happy with how things are going but wants Michael to break the mobility/pain barrier. He obviously knows Michael's in pain but explained that if Michael's more mobile, it's easier to cope with the pain and then less opiutes (that spelling looks wrong!) r needed which helps gets the bowel moving. Michael will always push himself but today has just been a bad one. The surgeon has no idea what Michael's like and most probably thinks he's not trying hard enough. He's already agreed to try sitting on the edge of the bed and maybe just stand up later on.
Meanwhile, the surgeon looked and checked the stoma. I was sitting on the other side of the bed and could not really see what he was doing - his fingers looked like he was cleaning out the top of a milk bottle. The nurse told me after that was how he checks all is ok. Michael didn't attempt to look and shut his eyes, trying to ignore what was going on.
I was speaking with the transplant coordinator today and we were discussing the stoma. I said I'd surprised myself in being able to look and that it wasn't as bad as I'd anticipated but that Michael still hadn't peeked. She was saying how some people don't see their spouse/partner in the same way when they have a stoma. To be honest, over the last few years there's been so many tubes and things attached to Michael that I can't believe anything would shock me. I hope it doesn't take Michael too long to accept it. In time the stoma nurse will come and give us complete details on how he/we deal/cope with it.
Justine
read my blog:www.the-transplant-wife.blogspot.com
Meanwhile, the surgeon looked and checked the stoma. I was sitting on the other side of the bed and could not really see what he was doing - his fingers looked like he was cleaning out the top of a milk bottle. The nurse told me after that was how he checks all is ok. Michael didn't attempt to look and shut his eyes, trying to ignore what was going on.
I was speaking with the transplant coordinator today and we were discussing the stoma. I said I'd surprised myself in being able to look and that it wasn't as bad as I'd anticipated but that Michael still hadn't peeked. She was saying how some people don't see their spouse/partner in the same way when they have a stoma. To be honest, over the last few years there's been so many tubes and things attached to Michael that I can't believe anything would shock me. I hope it doesn't take Michael too long to accept it. In time the stoma nurse will come and give us complete details on how he/we deal/cope with it.
Justine
read my blog:www.the-transplant-wife.blogspot.com
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