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
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