Wednesday

A relatively calm day today - nothing much happening. Well, at least for Michael anyway! As the kids were off school today, I made the most of it and had a lie in to catch up on some much needed sleep.

I sneaked out of the house just at the little angels were waking to do some shopping. Naturally, the first call came in - child in panic over something completely unimportant. Dealt with that and then the next call from eldest and most responsible child was, I thought, to tell me that first child was still stropping. Oh no - nothing as simple. Nathan had managed to break his bed. Not quite sure what they thought I could do whilst do the shopping (maybe just purchase a new bed?!). Anyway, on the drive home, decided it must just been the slats that had broken on his wooden bed frame. How wrong could I have been? The whole bed had collapsed and there was no way it could be mended. Forget unpacking the shopping - I then completely dismantled the bed, putting as much as possible in the bins and the remainder will get to the Dump (together with the lovely pink exercise bike which has just died**) eventually. Nathan believed this was another reason to get his room decorated. I decided it was a good reason for him to actually give his room a good clean and hoover. We compromised and the room got a quick duster tickling and a hoover.

**Yes - Michael's lovely pink exercise bike which he started his training on for his New York bike ride, has now given up. I was happily cycling last week when the pedals lost all their resistance. I have tried to pull the thing apart and mend it but I don't think there's much hope that it will ever work again. Guess it's done a fair few miles - I have gone back to using the wii fit but the only problem with that is I can't catch up with crummy tv at the same time :(

All now sorted and Nathan has a very comfortable alternative to a bed - a comfortable mattress on the floor. He's always moaning he wants and bigger room - and now, without the bed, it does look somewhat bigger!!

Time to wash to the sheets, and time for the house to fuse again..... and again..... and again. I have now narrowed it down to which circuit has the fault and I will eventually get round to calling the Electrician. Eventually the washing did get done.

What should have been a fairly relaxing day just seemed to turn into a rushed day. Why does nothing ever goes as planned? If only Michael realised what excitement he's coming home to next week.

Michael's day was pretty much the same (not as mine, but as every other day in hospital) - except obviously no coffee shop visits. His parents kept him company so at least he wasn't on his own. He spoke with the Surgeon today - again the topic of fluids came up and the Surgeon confirmed that no bowel transplant patient could possible drink enough fluids and therefore Michael will have to put fluids into his tube (going into the intestine) over about a four hour period a day. It wasn't until the Surgeon left that Michael realised if this is on top of the 15 hours a day of feed, he's going to be connected for the majority of the day. So, another thing to query when the Surgeon comes back tomorrow. I want to say to Michael that he then needs to start eating more so that he doesn't need to be connected to the feed for so long, or at all, but I know that's just unnecessary pressure on him. If only it was as easy as me just having to eat extra for him and him gaining the weight :)

They are also taking him off his Antiemetics (anti sickness) drugs which go through his picc line. I thought they were just making him go 'cold turkey' but no - they will now go directly into his intestine via the tube. They are very concerned about infection via the picc line. When Michael had one before (as well as the hickman line) we were very careful in keeping it extremely clean and ensuring when using drugs (obviously the permitted kind!) that it was always done in an aseptic way (sterile). Thankfully he never got any infections but they just don't want to risk this as infections after transplant can be very serious. They'll be trying this new way over the next few days to check whether Michael is still getting the same benefits from the drugs. Can't wait for him to not have to use them at all.

Michael also discussed 'socialising' because of the risk of infection and catching all those horrible bugs that are always around. Basically, no crowds - any place where there are large groups of people (although what does he constitute as large?). Outside is absolutely fine - there can be thousands of people but generally germs are dispelled outside. It's inside that's the problem. Still not really sure what we can and cannot do. He's happy for us to go out and about at the moment, and obviously when we're in one of the many coffee shops around Oxford, there are other people there. How many people constitute a crowd? Obviously at lot of it is common sense and if people are unwell, sorry - we just don't want to see you. This 'antisocial' behaviour will be for about 1 year, so would be good to know a bit more about does and don'ts.

Night x

Tuesday

We met with the Nutritionist today to go through everything needed for discharge. There's a whole list of things to sort but we're aiming for next Tuesday - yippee!!!

Before that happens, certain things have to be done:

1. Organise the feed and equipment delivery
2. Teach us how to connect/disconnect the feed and clean the tube which goes into the intestine.
3. Organise all the drugs.
4. Get Michael to drink more.

No. 4 is the hardest of all to organise - but apparently this is quite usual for all patients. The most he's had in a day is about one glass. He really needs to have 1 litre of fluid a day. As the Nutritionist explained - most people don't drink enough but it doesn't really matter. With the tacrolimus (anti-rejection) it's imperative to drink plenty as it can affect the kidneys. So this is the task ahead for the next few days. He can put the fluids through the tube into the stomach but it would obviously be easier just to drink.

At the moment, the feed is attached for 22 hours a day - still at 80ml an hour. As of today it went up to 90ml and tomorrow it goes up to 100m. That means that the feed will only need to be attached for 15 hours a day. Ideally (well for me anyway) would be nice to get down to 12 hours, but not sure Michael has even thought about that.

At home, Michael will have to keep a food diary as well as an in/out fluid chart. The fluid chart is something that will have to be monitored for about 1 year - this indicates any changes that may need attention. The food diary is to monitor the calorie intake - once they can see Michael is eating more, the feed can be reduced and eventually removed. It will definitely be easier getting him to eat more variety when at home. It's ridiculous that the hospital food is so inedible and that there's no facilities to heat your own food up. There's very little nutritious food you can take to the hospital that's cold - apart from a sandwich. Today he did manage two latkes (just about hot using my hot water and plastic bag method) and one cold fishball. Not ideal but at least it was something other than chocolate or sweets. The one great thing about UCH was that there was a microwave. Guess you can't have everything.

We ventured further afield today (about 1 mile more) to a another little parade of shops. Did the usual walk up and down - nothing much to see and then it started to rain. Took refuge in another coffee shop and just chilled. Sure they didn't mind 'a patient' eating a fishball in their shop - he did have one of their fruit juices to go with it. Oh - and that's another thing - no grapefruits or grapefruit juice. Apparently it doesn't mix well with the tacrolimus. Other citrus fruits are all fine - just the grapefruit. If that's the only thing he has to avoid - we'll cope!

Left Michael slightly earlier today as I knew the traffic would be bad because of the weather. I was right - longest journey ever :(

No hospital for me tomorrow - strike means kids are home from school. If all goes well, I'll never have to visit him in Oxford again on a Wednesday.

xx

Monday evening

As someone mentioned to me yesterday, I don't really have much news in my blogs. Think I'll have to start having more of an exciting life - or maybe just invent a few thrilling stories!!

Thankfully, Michael had another good day. Todays' selection of food was Minstrels, cheese and crackers, crisps and deep fried goats cheese. Obviously not all together and definitely not large portions. Still got a taste for latkes, so that's tomorrow's treat.

The Registrars told Michael that he can go home at the end of the week but before you all say - 'that's fantastic', it's so not happening. There's a lot to organise including his feed, drugs and supplies. The Nutritionist needs to sort food and we'll wait for her confirmation as to how long this will take. And as the Surgeon originally said - 'don't listen to anyone but him and the Nutritionist'. Unfortunately, didn't see either today so no idea what their thinking is. Actually now that they've talked about home it would be nice to have a clear conversation as opposed to touching on the subject. Tomorrow will be a week since they gave him two weeks till discharge - does that still stand?

Michael's just told me that his tac levels (that's the meds he has for rejection - I think) are slightly high so dosage just been reduced. This is likely to happen over the next few months. And yes, he is now using his phone. Guess that means he must be feeling better. Texting and bbm is now working - whether he actually responds is another question but at least it means I've got some way of communicating with him when I'm not there. Quite ridiculous that I can tell he's feeling better by the usage of his mobile phone!

I apologise that I have nothing more thrilling to report. I have a feeling the fun will all begin again when Michael comes home. I'll enjoy the relative calm while it lasts.

xx

Saturday Evening

How lucky am I? All the kids are out and it's just me and Waffle for the evening. Cannot remember the last time I was in the house on my own on a Saturday evening. The peace is wonderful and it's lovely not having to argue over the tv remote. We've had our evening walk and now we can settle down to doing nothing - bliss!!

Thankfully the kids were well enough to visit Michael today. He was in good spirits - my sister and brother-in-law were there when we arrived and they couldn't believe how well he looked. We had our 'picnic' lunch and I prepared Michael his mini latkes. How did I heat them you may ask. Well - take a plastic bag, a flask full of hot water, wrap the latke in the bag tightly and leave in the hot water until warm. Job done - and he managed to eat two which was amazing. I have to admit, a microwave would have been easier (but heavier to transport).

I didn't fancy coping with the Christmas shopping traffic so we didn't venture too far. Michael wrapped up warm and the kids took it in turns to push the wheelchair around the hospital grounds. They thoroughly enjoyed themselves - who needs theme parks?!?!

Back at the room Michael managed to eat 3/4 of a trifle and some more cheese & crackers. Still not convinced he's actually enjoying the food as opposed to just eating it. I know the Nutritionist said this is a new start and forget what's happened in the past but I can't help think he's never going to actually enjoy food but rather just eat it cause he has to. I hope I'm proved wrong. Meanwhile, the nurse told him he's not peeing enough and needs to drink more. If he doesn't, they'll have to connect him up to a drip. He says he can't drink that much more and is happy to just accept the drip. My thinking is, why have a drip connected when you can drink. But no, Michael doesn't see it that way and says he just can't drink that much. This is so frustrating - exactly the same as previous ops he's ever had - I could scream. Don't get me wrong - he's doing fantastically but.......

Surgeon popped his head round today. Think it was just a courtesy call as I assume he must have been on his way home to bed, having operated in the early hours and looking the most tired I have ever seen him. Apparently they are changing the antibiotics Michael is on. These are for transplant patients to stop PCP (which I believe is something everybody has and the antibiotics keep it dormant?). The only problem is, it's lowering Michael's white blood count too much. They've taken him off them, and all has been ok but as soon as he's back on, they lower again. So they are going to change this to another antibiotic. This is something he will be on for about 1 year. Only other important issue we had time to discuss was where you could purchase the best chips!!!

All too soon, it was time to leave again.

Well I'm off to watch rubbish tv - all on my own.

xx

Friday

It's so refreshing not to have to blog any major changes on a daily basis. Michael is just doing really well and his strength seems to be slowly building.

I hadn't seen Michael since Tuesday. Lauren's cough and cold got the better of her and she had a 'mummy day' on Wednesday. We just had a lazy day - she must have needed it as has been much happier ever since (and a happy daughter makes a happy mummy!). Thursday I didn't go to the hospital either, so it was lovely to see him this morning, freshly shaved and smiling. I realise he's got a long way to go, but he really is like his old self - happy to talk (whereas a short while ago, he barely listened) and just interested in what's going on in the World, and of course Radlett!!

Before our walk, I had to sample some of the delights sitting there - no will power whatsoever. I was so impressed that he actually wanted to do two laps of the corridor - amazing improvement.

He then mastered cleaning and changing his stoma himself. The Stoma Nurse had last come in on Tuesday and he was hoping that he would come again yesterday. As not, he decided to brave it himself. All managed quite successfully - definitely getting over his struggles with the whole stoma thing. Maybe the nurses don't come that often as a way of encouraging the patients to deal with it themselves (or maybe not!!).

The Surgeon popped in but purely to ensure that we were having our daily trip out. I had googled to see if there was Oxford's version of Brent Cross nearby but the only place I could find was in the City Centre and I didn't fancy struggling to find somewhere to park. So we headed for our usual haunt - Headington. I have never known a parade of shops to have soooo many charity shops. Anyway, we cruised along the pavements - today's wheelchair seemed to veer towards the right and at one point I think Michael thought he was going to land up in the road - thankfully not. As always finished off in Starbucks - they're really not going to make much from us. One coffee for me whilst Michael devoured a slice of Aaron's jam & cream swiss roll (happy that he ate it all but quite disappointed there was nothing for me to finish off!!) and then nibbled on some crisps (sorry Starbucks they weren't purchased in store either).

These trips out are great. Michael does always pull a face when he realises we are going out - and makes out to the nurses that I'm such a bully, but I do believe he actually enjoys being out of the hospital. Today I did make him walk from the room, along the corridor, down the lift and to the car - he managed. I guess I am a bully (a nice one I'd like to think) but now it really is a time for building up his energy for home. There'll be no wheelchair there so the more he can walk, the better.

Also the time we spend now is no doubt more than we will when he does come home. As much as I have managed to keep everything in order whilst he's been in hospital, I know that once he's home, I won't be sitting with him on a daily basis, watching tv together and walking the hallway - I'll be doing 'stuff' and I'll slot back into the usual routine of life. It's just what happens - so I guess we should enjoy our 'quality time' together. Of course, I'll be there to help him - always, but the amount of time we spend sitting, talking or just sitting at the moment just wouldn't happen when he's home. On the other hand perhaps life is somewhat protected for both of us when he's in hospital and I'm visiting - suppose it's secure for both of us knowing there's always Doctors and Nurses around. I can't though think of a time in the last few days when we've actually needed to call the nurse for any sort of query or help but perhaps knowing they are there all the time is comforting in itself. Once Michael's home, we don't know how either of us are going to feel. Michael seems much stronger and improving each day but once we're home maybe having the 'protection' removed will change things a little. Also, at the moment the nurses deal with all his meds and back home, it's all up to us!

Guess I'm rambling on and in time we'll see for ourselves how we cope with it all. Meanwhile, I'm thrilled to have another day when I can tell you 'he's doing really well'.

xx

Tuesday

Oh the joys of children. Last night, just as I was about to flop into bed, discovered Nathan had put one of his most exciting Bar Mitzvah presents in the wash with his jeans. Two tickets to the International Horse Show. OMG you should have seen his face. We managed to pull the wet pile apart and just about had two tickets, but completely unusable. Phoned Olympia this morning and explained my sad tale - all now sorted.

Then today started with a struggle to get all three of them off to school. Without giving away who caused the problem, let's just say through the coughing, spluttering and moaning someone was far from happy about having to go to school. Would have been so easy to put said child back to bed but I knew Michael was expecting me - talk about being pulled in all directions!! Anyway, eventually all left and my usual routine commenced.

Found Michael in good spirits when I arrived. He'd already had two walks up and down the corridor. Today's little food gift was Minstrels - good choice and he started nibbling straight away. That freed up yesterday's Cadburys Buttons for me. Apparently the Reg had been round and they've discussed discharge from hospital in two weeks if everything keeps on going as well as it is. Exciting and quite scary - although definitely more scary for Michael than me. That's why the Surgeon is so keen for us to keep going out - just so Michael can start adjusting to life 'outside'. Michael was not keen to repeat yesterday's trip out and thought that perhaps we'd just visit the roof garden. The Surgeon then popped in and asked if we were going out (and only wanted a 'yes' in response) and that was my chance to jump in and say yes. Guess Michael was resigned to the fact that we were going out again.

We did the same as yesterday and waiting for his anti sickness drugs. They then disconnected him from his feed and also his drip (on fluids today as his anti-rejection levels are a bit too high which affects the kidneys and therefore more fluid is needed. Nothing to be concerned over - the levels are monitored every day and could be higher as bowel starting to absorb more). Change of shops today - Waitrose first. Thought by having a stroll along the aisles may tempt him with something. I was trying to be very subtle but failed miserably - he knew what I was up to. We then strolled (actually he relaxed in the wheelchair and I did my weight lifting practice) along the shops and then stopped for a drink. Shame it's not summer - it's hard to constantly push him so it means spending the time at coffee shops. Meanwhile, it's just nice not to be the patient and visitor for a couple of hours - we talk about the same things but it makes a big difference not being in the hospital room. All too soon it was time to return - Michael even walked from the car all the way back to the room. In a few days I think I'll get him to push me back in the wheelchair.

Fresh air must have made him hungry - managed two small crackers and cheddar cheese. First savoury food he's tried - and he really enjoyed it.

So it's all looking rather positive. Told the kids that Daddy may be home in as little as two weeks and they were so excited. Could my daily drive to Oxford soon come to an end? I really do hope so - things are looking up.

xx

Monday Evening

So we made it to Headington. Michael's face was a picture when the Surgeon came in this morning and thought we were going to Oxford City Centre. Think that was stretching the idea somewhat. The local shops were just fine as a starting point. Once I'd managed to squeeze the wheelchair into Michael's car, we set off. Sure Michael's shivers were more from nerves than cold.

Our adventure started at the Post Office. Definitely the longest queue I have ever experienced at any Post Office. One man had a pile of (I assume) Xmas cards, each one being weighed individually!! Next stop was Boots as our thermostat has just broken, together with some intensive foot cream for 'those feet'.

The whole experience was quite comical. Pushing him along the corridors of the hospital is a doddle. He was much more of a weight on the pavements and all the pavements seemed to slant towards the road and were extremely bumpy. I tried my hardest to give him a smooth ride - but it was not easy. At one point I struggled to get over the shop threshold and we did laugh how funny it would be if he just stood up and walked across and then sat back down again. Bit like that sketch from Little Britain - although Michael was definitely better dressed than the character Andy (apart from his Crocs as I forgot to bring him shoes up!!) and please, no comparisons to Lou thank you very much!!!!!

We then chilled in Starbucks. He even managed half a calorie laden millionaires shortbread (and more to the point, I managed not to finish it!). I was actually surprised at how long we managed to sit and talk without him worrying about returning. We didn't get back till just after 3pm - nearly out for two hours. Had such a nice time (I'm obviously easily pleased) and I think it definitely gave Michael a taster of life 'outside'.

Back at the hospital, the Stoma Nurse came and gave Michael another lesson on cleaning and changing. Michael did amazingly. Don't get me wrong - he's not jumping for joy about it, but he's dealing with it.

Hopefully we'll have another little trip tomorrow - just hoping my coughing, spluttering daughter gets off to school in the morning......

Monday morning

Good journey today - even with the fog!!

Michael's so excited about going out today..... not. When I arrived, he hadn't even washed - all delaying tactics that won't work with me. He's decided to wait for his next lot of anti-sickness and then off we go.

He didn't have too bad a night and says he now gets at least two hours solid sleep. Looks pretty good on so little - I find it hard to cope on 7 hours. Last night was horrendous - we had two power surges which both set the house alarm off and then, naturally, I couldn't get back to sleep. Definitely more caffeine today.

Surgical team and pain team have both been round today. Nothing much to add. His patches r going down tomorrow to 25mg and they are stopping his lunchtime diazapan. Unfortunately no miracle answer about the sickness :(

Now waiting for the next text from Lauren, who now says she's not well. Her hacking cough turned into a bad cold and she spent most of yesterday morning in bed. Thought it was too good to be true when she happily went off the school this morning!


Justine

read my blog:www.the-transplant-wife.blogspot.com

Saturday

Today things really didn't go as planned. Yesterday I had to tell Lauren she was unable to go and see Daddy because of her hacking cough. She was very mature about it and understood that she really didn't want to give him her germs. The question was should I take the boys and arrange for her to be with a friend, or spend the day with Lauren and arrange for someone else to take the boys and spend the day with her. As she was so mature about it all, I arranged for her to go to a good friend.

Just as we were leaving today, Aaron was already in the car, I realised from the revolting sniff that Nathan gave, that he too had germs that he shouldn't be spreading. He was obviously devastated but there was nothing I could do. So thankfully another friend came to the rescue and Nathan was entertained for the afternoon.

Michael was fairly good today. Aaron noticed the remarkable improvement from last week. He wasn't as good as yesterday - still good but just a slightly more uncomfortable day with the sickness. Said he'd just been feeling sick all the day and the antiemetics (anti sickness) were having little effect. We saw the Surgeon who was still very positive about Michael's continued progress and also said that few patients manage to come out of hospital from bowel surgery without antiemetics (that's fine, as long as they are perhaps reduced!!).

We took Michael again to the roof garden - little bit colder than yesterday but still lovely to get some fresh air (obviously more so for Michael as I get some every day). Aaron had great fun pushing him in the wheelchair (amazing what pleases some kids!!) We also went to the cafe where we encouraged him to choose a different flavour packet of crisps. I can't tell you how much I have to fight the urge to keep offering food to him.

Guess we were only out of the room for about 40 mins - but I think it's really important to get away from that room and bed. The Surgeon has said this week we should go out every day and by go out he means out of the hospital grounds. Michael didn't seem too sure but I've said we'll go in the car to Headington and then I can push him around the shops in the wheelchair. I know he feels it's too much but when he comes home we've got an hour car journey, so this will be a doddle. Can see that the Surgeon sees the benefit of getting out of the hospital environment. I'm quite looking forward to it, even though I know Michael's not going to be smiling as much as I am on Monday.

Friday

It's so nice to be able to blog without using big medical words explaining what the day's problems are. He really is making great progress.

When I arrived, the TV was on (which is the first time ever - normally he's just been sitting then staring into space or sleeping) and we had a good old natter and caught up on the last two days. Really is the best he's been - so fantastic to see.

The Pain Relief Team came in. The Dr was thrilled how Michael's reduced his opiates. He came into hospital on such a high dosage and they are really impressed on how he's managed to reduce them. He's now on fentanyl patches (going down to 37mg tomorrow) and a small amount of diazapan. He is written up for oramorph for as and when but has never used it. I just look forward to the time when he can also reduce his sickness meds.

Today, his feed went up to 80ml per hour (Michael was none to pleased) and that is the maximum now that it will go to. Not quite sure why it doesn't go any higher but I haven't seen the Nutritionist so will ask next week. She would like him to eat say a kit kat a day (at least) which is about 200 calories (4 sticks). Today he had some crisps and a bit of strawberry mousse. They reckon he'll be on the feed for about 6 months - I think that's because it's unlikely he'll be able to build up his calorie intake that quickly and this will sustain him (with some food). Michael's always been an appalling eater and I did mention this when I last saw N, wondering whether he'd follow the same unhealthy path. She clearly told me to forget what had happened in the past - this was a new start. Maybe at last he'll also eat brown bread and vegetables. Ever since I've known Michael he has had a very limited, generally unhealthy diet - the more chocolate and sweets, as far as he was concerned, the better. The kids always knew the white bread was for Dad and Dad wasn't allowed to eat vegetables because they irritated his stomach. So now Nathan won't feel alone when I 'encourage' Michael to finish his broccoli!!

It's just so hard at the moment to know what to take him up, that's not nosh, but that he'll be interested in. I just don't want to feel like he's being pressured into anything so will just have to take it step by step. I've got so many queries when I see N next week.

Stoma Nurse came round and is now giving Michael lessons on how to deal with it himself. So far, so good - dealing with it all really well.

Michael wrapped up warm, woolly hat and all, and I wheeled him upstairs to the roof garden. Lovely dry day and it was great to be outside. First time in six weeks for him!!! We then had a quick whiz round the hospital - just for something different to do. So good to be out of that room.

Also squeezed a hairwash in and a corridor walk.

So great to see such progression this week. It's now exactly six weeks since that phone call - talk about ups and downs, and I know there's loads more to come but meanwhile it's fab to see him come out the other side of this horrible virus.

Keeping going Michael.

Night x

Wednesday

When I last saw Michael yesterday, he was pretty comfortable and feeling a little more positive. Today, he's had an ok day - still a little bit of sickness which isn't even related to eating anything but thank goodness still no temperature.

I'm just getting more and more tired, and the early nights just don't seem to happen. Today was a catch up on things day but I was on go slow and it didn't help that when I arrived at Harlequin, I'd forgotten my wallet. None too pleased I can tell you. Only good thing was getting a parking space on the first floor second time round rather than the 4th!!!

The kids are great and seem happy enough with their once a week visit. We've slotted into our routine of kids off to school, me off to hospital, kids come home, me come home, eat, sleep. Obviously they have homework in between and I have the usual house chores. The last few weeks I've also had the joys of a 'teenage' daughter to deal with - a real journey of discovery. Thinking of writing a new blog - 'www.sureiwasnotlikethat@blogspot.com'!!!

For the first time, I'm having two 'days off' in a row. Tomorrow we're looking at another sixth form (how aging is that? Sure I only left school about 10 years ago?!?!?).

Looking forward to another outing with Michael on Friday - if dry, think I'll get him to wrap up warm and we'll get some fresh air. Apparently there's a roof top garden somewhere - we'll go exploring!!

Now off to watch some very cute polar bears.

Night x

Tuesday - 2.10 pm

Michael's just nodded off so I can carry on blogging.

So the crisps was an amazing achievement, and prior to that he even had a nibble of a cheese slice). We spoke to the Nutritionist this morning and it's agreed that the feed is going up to 70ml today and if all goes well, 80ml on Friday. Michael's not thrilled, especially as she'd told him the machine only moves up in 10 ml units and now he's discovered it moves in 1ml units and it's her that has decided to move in 10ml!! She has also given him a two hour break from the feed each day.

Hasn't been sick and I look forward to the day when he may not need anti-sickness drugs. How amazing would that be if he didn't have to inject himself with anything? Tablets is one thing but to be injection free would be amazing. Think I'm getting a bit carried away but nice to even be thinking about progression now.

Apparently Michael spoke with the Coordinator today. They are putting together Michael's exit package (not a wrapped present or anything!) from hospital - obviously not right now but maybe as soon as the end of the month. All of a sudden things seem to be moving quickly and this is all quite encouraging news. We'll be given the dos and don'ts and things to look out for, etc, and it's likely we'll be back here once a week - but one day a week would be an improvement on my journeys now. More I think about it, the more I see no reason for him to go to the flat but we'll just see how things progress. For now, it's nice to think he could be home before the end of the year.

xx

Justine

read my blog:www.the-transplant-wife.blogspot.com

Tuesday

Got my early night - unfortunately didn't get much extra sleep. Lauren has managed to pick up a terrible cough and kept us both up for a good couple of hours. I'll try again tonight!!

Guilty parent this morning as she said she didn't want to go to school but as far as I was concerned, no temperature meant no day off. It wasn't an easy feat sending her on her way and for the first time since she started secondary school, the boys left without her. Although they were excellent spies, letting me know when she eventually made it to the bus stop. So far, no call from school so I'm guessing she's forgotten how 'ill' she felt this morning!!! Do feel awful - if it wasn't for Michael, I may well have let her go back to sleep (but don't tell her that).

Kept thinking on the drive here 'hope he's still doing well' and thankfully he is. We've just come back from a zoom around the hospital. Took a pit stop in WHsmiths, trying to tempt him with some food/nosh. Opted for choc buttons, but while I left him sitting there to draw some money out, obviously being surrounded by all that nosh got his tastebuds goings and he then went for a bar of choc and crisps. Then went to the Cafe to get a coffee. Bit concerned as very busy (it was lunchtime) and worried about all those nasty germs but we found a quiet spot. Great to be out and without even realising it, while we were talking, Michael had eaten half a packet of crisps. Fantastic! Think this will have to be a regular daily trip out - definitely a better way to get him to eat rather than sitting in bed with people trying to tempt him with food.


Justine

read my blog:www.the-transplant-wife.blogspot.com

Monday evening

I have to say the change from Saturday to today was great. When I arrived this morning, Michael looked much (ok a little) more cheerful. He hasn't had a temperature for two days, which really is cause for celebration - although I am a little apprehensive about getting too excited as things seem to change (and not always for the better) so quickly. But, for the moment, things are definitely looking more positive. He's definitely not feeling as sick. He is still counting the hours until his next anti-sickness injection but hasn't vomitted as often. Although no temperature, he is still getting the sweats but that's usually at the time when he's feeling very nauseas.

Surgeon is delighted now that the virus seems to have worked it's way through the system. He is still suffering with achy joints but that hopefully will soon leave his system too. He has lost a little bit of weight although again nothing to worry about as he was higher than his usual weight anyway from being on tpn. They will obviously keep a close eye on this, together with his enteral (stomach/jejunum tube) feed and his magnesium levels which are sort of linked. He's still on 60ml per hour - not sure when they are thinking of increasing this and the optimum rate for Michael would be about 70/80ml - so he's not far off. I believe that at the moment, as he's not getting enough feed that's why his magnesium levels are low. Once this is increased, and hopefully he starts to eat, this will all level out. Again, no pressure whatsoever with food, although he has requested some cheese slices for tomorrow - as always I'll be there to help out if he doesn't want to eat them (and I wonder why he's losing the weight and I'm not!!!).

He is now off the antibiotic which all transplant patients are on post operative and he will continue to be off this for another week. They do believe being off this helped towards his body fighting off the virus. He will have to go back on this antibiotic or something similar but they don't want to rock the boat while things are looking so much better.

The Surgeon today even spoke about going home - obviously not right now, but just to think about it. I did question about going to the flat first and he did say we were only 1 hour away so that wasn't too problematic. I did mention about relocating to Scotland as Michael coming home seems a bit scary. Especially as we'd always assumed he would first move into the flat. He did also say if we wanted the flat it was of course always available. To be honest, why would he really want to be there, in his little room, when he could be in his own home? But that's still a way off so Michael and I said we wouldn't worry about it at all just yet. But it's great that the word 'home' was even mentioned.

Tonight I have promised myself an early night. It was a really busy weekend - which was lovely. Lots of socialising with friends and family, but exhausting. On Saturday evening I actually found myself in bed before the kids and for the first time I went to bed before one of the kids came home. I think it's all just catching up with me - getting out of bed is a nightmare and this morning, once I'd woken the kids I was tempted to climb back into bed but I knew Michael would be none to pleased. I have given myself an extra day off this week though - to catch up on some sleep and also the kids needs various things so it's off to the shops for my favourite past time (not)- shopping. Can't say it fills me with delight but the thought of saying goodbye to the kids and then climbing back into bed sounds so exciting - I'm counting the hours.

Feeling much more positive today though - so nice that Michael was brighter. We managed two walks today - doing a foot (size 8) more each time. It's all progress - just hope it continues!!

Just a quickie also to say thanks for everyone's support. I know I've said it before, but we have amazing friends and family - 'thank you' just doesn't seem to be enough but.......... THANK YOU!!!!

xx

Saturday

Tiredness has hit and I feel I could sleep for hours. I'll try and keep you updated in as quick a time as possible.

I was hoping to find Michael better that I did today but was a little disappointed. He was sleeping when we arrived and it was lovely to see a little grin on his face when he did wake up. He'd had a fairly good night with no temperature spikes. When we were there though he was extremely cold and was swaddled in blankets - a few thin hospital ones and 3 of our own thick ones. At one point he was sick (never seen the kids move out the room so quickly) but nothing much to bring uo startp.

Surgeon said yesterday he's happy for Michael to start sipping a little, suck on sweets and maybe even have an ice cream. The sipping he's happy to do. We did buy him and icecream today - did have a couple of licks but was more worried he would be sick rather than actually feeling sick. Nathan was though happy to finish it for him. The enteral feed is going well - still on 60ml per hour with a couple of hours break every day. Looks like he won't now need tpn at all (I hope!).

We did manage a walk today - I know he also had one this morning. Guess that's the problem if no one is up with him - no one there to encourage him to have a walk. The nurses obviously don't have time to take him on a stroll down the corridor.

Really don't think there's much else of any significance to report. Maybe after a good night's sleep I'll remember lots more info. For now, I've had enough and I need some sleep.

Night x

Friday - 2.10 pm

Surgeon just been round - keeping his distance as he's been unwell. Did say maybe Michael's passed whatever he had on to the Surgeon!?!?

Anyway - he's happy as the temps aren't spiking as much and hoping that will continue over the weekend and then subside. Going to do another scope tomorrow morning.

We mentioned about the stomach and he said there is no question that the stomach will work just a question of time. All the tests they did prior to transplant confirmed that the stomach had not lost its motility and will work. That's made me happier.

Not going to use tamiflu inhaler at the moment - Infectious Disease team have advised against at this time.

Michael's anti-rejection have been reduced a little so his body can fight off the virus (or whatever he has).

Justine

read my blog:www.the-transplant-wife.blogspot.com

Friday morning

Just arrived and Michael's in negotiations with the nurse as to which drugs he can avoid taking. Basically all meds are now being put through his jejunum tube, which is making him extremely bloated. Now making his own choice on which meds he needs!! With all the water flushes (water has to be put through after each med to make sure it goes completely through tube) that he has to have as well, it comes to 70ml. It may not sound much but his feed is now only on 60ml per hour. Anyway, gave some and waiting for Doctors to decide if other meds need to be taken. One of them is meant to help with stomach acids and to stop the nausea - but doesn't seem to help. Meanwhile, the drug he was meant to be taking for the ulcers was also being given through the tube. I asked the nurse on Wednesday how that medicine could possibly work - how could it get into the stomach and coat the ulcers if it was going directly into the intestine. She had no idea but understood my confusion - she checked with pharmacy. It transpires that it couldn't get to the ulcers and so he's now off that drug altogether.

We've managed a walk this morning. Hard work for Michael and I feel cruel pushing him to do it. No smiles today :(

Infectious Disease team have just been in. They're satisfied that Michael has nothing infectious - all tests have been done. They would have thought rejection would be the problem but are aware this has also been ruled out. Michael did ask if he could be taken of the antibiotic that he's on (and has been since surgery) as he thinks it adds to the sickness. They have said no as it is the best one for transplant patients to help fight off infections.

Surgical Team just made their visit. Had a whole discussion on the neurological pathways and the messages the brain sends the stomach and gut. I'd asked various questions about the stomach working and the intestine filling up and feeling bloated. All very interesting but now I think about it, not sure my question has been answered!!! Only concern was he didn't instil confidence in either of us that Michael's stomach will definitely start working again. Both Michael and I picked up on this although didn't actually question him. Think that's a question for the Surgeon as he and the nutritionist have always been confident it will work when ready. Anyway, more of the same - keep going with feed; can take very little sips of fluid; temp spikes aren't as high so hopefully whatever he has is leaving his system; drug Michael didn't want is now going to be given by a melting tablet under the tongue. They realise how frustrating this all is and as a Team they too are frustrated but hopeful things will start moving along. As yet, the flu results have not come through and they reckon by the time they do, Michael will be over it all.

Time for a hairwash - although he's just dozed off!

Justine

read my blog:www.the-transplant-wife.blogspot.com

Thursday Evening

I can't believe it's nearly 5 weeks since major surgery, and one small injection today and he's screaming at the top of his voice. Couldn't even bear having his toe nails cut - in the end they had to call someone in the hold him down (bit drastic I know) and then had to muzzle him. I'm guessing by now you've realised I'm talking about Waffle's check-up appointment at the Vet. Apart from acting like a baby, he's now been signed off by the Vet and his daily walks can now be increased to 20 minutes, adding 5 minutes each week until 12 weeks when he can at last be let off the lead.

Looking forward to Michael's Doctors signing him off (or at least telling him the virus is out of system, sickness stopped and stomach working) and managing a 20 minute walk in the fresh air. From all reports today, was a better day. Still getting temperature spikes but nowhere near as high.

The Surgeon liaised with colleagues in Miami and Indianapolis today who both agreed that it's viral and not rejection. The Team are now trying to track down a type of tamiflu which you inhale - it's not something that's used in the UK. No idea whether they'll be able to get hold of it and what makes it better than the oral tamiflu that he's taking at the moment. That'll be a question for tomorrow.

Previously they were talking of giving Michael a massive boost of steroids (something like 500 mg) at the weekend if they couldn't confirm what Michael was suffering with. Through a process of elimination it would mean that rejection was the problem and therefore the steroids would be needed. So I'm assuming that no steroids now as they are in agreement that no rejection.

I will keep you posted.

xx

Wednesday Evening

Thankfully Nathan is absolutely fine. Forced him to have a walk and get some fresh air and by the end of the afternoon was ravenous and back to his normal self. Back to school tomorrow.

No more results from any of Michael's tests. Wish I had more to report, or at least something positive, but all remains the same as the last few days. Keep hoping when I get to the hospital each day that there'll be some progress (however small) but over the last week..... nothing :(

And please please know that if I haven't blogged for a while, this doesn't mean that anything is wrong. Generally just means I just haven't had time. Often when I'm at the hospital, really don't get a chance - Michael doesn't really sleep during the day and I feel guilty spending more time with my phone than with him. And when I'm at home, catching up on things, again I don't always get an opportunity to blog. So we'll go with the common phrase 'no news is good news' or, the alternative 'no news is..... no news'.

Let's hope tomorrow, I have something different (and hopefully) positive to report.

Night x

Wednesday - 1.00pm

Managed a walk. On route popped back into Michael's old bathroom and retrieved the soft toilet roll that he'd left behind. Can't have Michael using sandpaper.

Returned to his room and got told off by one of the care assistants for taking two extra blankets. When Michael's at his coldest, he needs about 7 blankets to keep him warm. That's together with the fleece blanket I brought him up. Some evenings because there's not enough blankets, they've given him sheets (really keep you warm!) so I thought I'd plan in advance. Apparently there's barely enough blankets to go round the ward. I'll have to take them next time when no ones looking.

Got to dash off home now. Nath not well - my lovely friend picked him up from school for me. I think he needs me more today than Michael.

Justine

read my blog:www.the-transplant-wife.blogspot.com

Wednesday - 12.30 pm

Here we are again. Michael sitting on the bed with blue gloves, filled with ice, on his head, neck, knees and feet and me having a good laugh and taking some funny pictures!

Nothing much to report today. Registrars came round before I got here. Would have seen them if it had not been for the fact that I had to circle for 15 mins to find a parking space. Pretty much the same news as yesterday - think its viral, waiting for flu results to come back.

Michael's temp is still up and down. Still feeling sick (just burbing now to prove a point!!) Although not as much coming up or being drained out of tube.

Forgot to say he moved rooms again yesterday morning. Feel we've moved down a star rating - slightly smaller, bit noisier but has a heart monitor which he needs to be hooked up to when having magnesium and potassium. Only another 19 rooms to sample.

Michael's obviously fed up, although has managed a few smiles. We're now off for our corridor stroll so that his bed can be made.


Justine

read my blog:www.the-transplant-wife.blogspot.com

Tuesday

I did start this blog hours ago, but never had the time to finish.....

Still no answers and still doing further tests. Surgeon believes it's viral as opposed to rejection, what with all the flue symptoms (aches, runny nose, dry cough). He's having a further ct scan today just to check his chest and neck area are clear of anything (lymph nodes are slightly swollen). Just having a venflon put in now as xray have said they need this to insert the dye (rather than the picc). Just found a vein!! Gone in - no it hasn't. Big scream from Michael and the Doctor pulled the needle out (he was a bit concerned!!). Tried again, and let's just say if they were doing that to me, I'd have used 'unnecessary language' and told the Dr where to go! I have to say he gave the impression of being very calm, but I guess they're trained to look 'cool'. After a third attempt on his other arm, it eventually went in but was in an extremely uncomfortable position.

When the Team came round this morning, they seemed to (and that's where I finished typing earlier today and I have absolutely no clue what I was going to say!!!).

Anyway, the Surgeon is still quite confident that it's viral but they are still awaiting further results. Cdiff and CNV both now ruled out.He's already on tamiflu (just in case).

The CT scan showed nothing - again!

Got to have extra potassium and magnesium as both levels low.

The results of yesterday's biopsy were just 'ok' - whatever that means. And the latest is, if nothing else shows up by Friday, it will be a major kick of steriods. I've now got a list of questions to ask the Surgeon. Up until know I felt I understood more less what was going on with everything, but now I feel 'lost'.

Short one tonight - off to compile my list of questions.

Night xx

Monday Evening

Nothing much to report from earlier. We did manage our walk up the corridor having our usual nose in each room as we walked along.

No results at all. Michael is only the 11th patient to undergo this operation at Oxford (two further having taken place since Michael's op) and therefore there's no statistics or history to refer to - Michael seems to be the first to have suffered as he has with these temperature spikes. Typical of my husband - he just can't seem to ever go down the easy route.

Michael is also suffering with very achy joints, especially his back. Gave him a massage in his lower back today - if it wasn't for my hands going numb, I think he would have been quite happy for me to carry on for hours.

He's got terribly dry skin, which he'd started to get when he was on tpn and now it seems to be worse. He's not the best at putting moisturiser on (guess it's quite a girly thing?) and he's feet are particularly bad. Now, as many of you know, I can't stand other people's feet so it really has been a labour of love today - they had a real pamper - me wearing protective latex gloves. First they were exfoliated (not sure that's what my lovely Champney's scrub was made for!), followed by plenty of moisturiser. I have to say, they looked much for presentable and I didn't feel too nauseas looking at them!!

I do hope tomorrow gives some more positive news - I think it's about time now.


xx

More initials...

Just taken more bloods to test the genetics of the graft (the new intestine). When matching an organ to a recipient they do an HLA test (HLA genes have historically been identified as a result of the ability to successfully transplant organs) and now they are going to delve deeper. There is a special laboratory here where this gets tested but results could be a while - doesn't sound like a straight forward test!!

Justine

read my blog:www.the-transplant-wife.blogspot.com

Too many initials!!!

Ok - too many letters and I'm getting confused.

Michael was cmv free before the op, so was the donor and the bloods he received. He is being checked for this but unlikely to have it.

The other infection could be cdiff (which you may have heard off). This is a superbug.

So please ignore the cdf thing (not sure there's any such thing?!?).

Also, other recipients have no ill effects which is very positive news.

xx
Justine

read my blog:www.the-transplant-wife.blogspot.com

Monday

Here we go again - another week. Got up to the hospital slightly later. Had to take Nath to the Orthodontist, drop him back at school and then had to stock up on some lemonade for Michael. He's still rinsing out his mouth as he's not allowed to drink anything and lemonade is the favour of the moment. He was using lucozade which was turning his teeth luminous orange (all natural colouring!!!) and coke - dingy brown colour. His teeth may now not be stained but if he keeps this up, they'll drop out!!

There was no smile to greet me. His temperature reached 40.1 last night - a 'record' as the surgeon hadn't encountered that before. Not quite sure that's the achievement we were after. Michael said the ice he used to cool him, melted on touch. He feels very achy and when he has the temp spikes he says his joints lock - all sounds very flue. They've had no luck in locating the reason behind the temperature and are now starting to eliminate things - he hasn't got malaria; they're now doing a nasal test for flu (obviously not the strain he was vaccinated against); checking for gdf (can't remember what that was and internet taking too long to download on phone to check. Some infection - they take stool sample to check) and various other things. He's come off the antibiotics as they are doing nothing, and he's on various other meds which are slowly being stopped as things are being eliminated.

They are also checking with the other recipients of the donor's liver and kidney to see if they are suffering with any ill effects. This is all so heavy and maybe only now is the reality of 'transplant' hitting me. This not knowing is incredibly draining. I feel like I'm back to when Michael was in the Theatre - my mind's working overtime :(

Michael had his weekly scope today. Surgeon gave him an 8.5/10 whereas last week it was a 9 - another disappointment. Again, nothing to worry about - it's more the biopsy that they're looking at and those results should come back later. Whereas previously the veolar were all floaty and rounded, today some were blunt ended. Sort of new he wasn't as happy as it took him longer to say anything. I obviously asked if this was a problem and how to get back to a 9 to which he said it all related to the biopsy results so again we'll wait. Bet I won't be here when the results return.

Michael's just waiting for his antisickness and then we're going for a walk along the corridor. I'd actually prefer to lock myself in the bathroom and scream but I don't think that'll do either of us any good.

xx

Justine

read my blog:www.the-transplant-wife.blogspot.com

Sunday

My usual early Sunday morning start. Bearing in mind I had such little sleep, I didn't feel too bad when the alarm went off.

So how did I spend my two hours of quiet time without the children this morning? As any girl would - washed my hair, painted by nails, looked through some magazines and generally relaxed. I don't think so!!!!!! Having discovered the patch of chipped paint on the soffits by Aaron's bedroom window, I obviously had to sand it down and paint it. Once that was done, I embarked on cutting the Wisteria back. It really is beautiful, particularly when it flowers, but boy does it take over. Aaron & Nathan's bedroom windows were getting surrounded and the branches were also started to wrap themselves around the drainpipes. In my usual make-shift sort of way, and without a ladder (which I wouldn't have wanted to climb up anyway), I had to stretch out my bedroom window and Aaron's window and cut the branches - a fairly easy task. When it came to Nathan's window, nothing as simple. I had to climb out onto the balcony (the type that's there for show rather than use). The only way I could get out was to lean out and put the step ladder out and then I maneuvered myself out the window and reached the step ladder. There was masses to cut back - I just cannot believe how long the small branches get. Had to yank it from around the drainpipes and typically broke the drainpipe!!! Anyway, sorted that one - another talent I can add to my CV. Whilst standing on the balcony, thinking to myself how dangerous it was and how stupid I was, I did have a moment when I thought what would happen (gd forbid) if I fell. I guess it was quite irresponsible but Michael's used to my mad ways - once I get fixated on doing something, there's no stopping me. Not sure what our neighbours would have thought if they'd seen me up there. Anyway, all sorted and now I can relax in the knowledge that the wisteria is sorted!!

Michael's day didn't seem to be too different from the last few days. High temperature sweats to cold sweats. He had another CT scan - although I'm not quite sure what for. Yesterday they said they were waiting for these test results on Tuesday and now he has another scan - guess I'll find out tomorrow. His temperature went as high as 40 today and he's been having to use a lot of ice to keep him cool. Not sure if anyone used my latex gloves and ice trick! I'm sitting here not really sure what to even tell you - that's about the extent of the information I have - and it's so frustrating.

Just having one of those low moments and just can't express how or why I feel like I do (I know I have plenty of reason to be low, but no specifics!!). Think it's time for me to sign off before I start rambling on about lonely I am sitting here (2 in bed and 1 out) and how it feels like forever ago that Michael and I had any quality time together............... Ok, I'm rambling so I'll say goodnight.

xx

An ode to a bowel!!! Enjoy........

Saturday Evening

I'm back!!! Longest time I've gone for a long while without blogging - was getting a bit shaky....

Yesterday I had a day to myself. Just needed some time to get myself together - do the unimportant things in life like a bit of cleaning, bill paying, etc. Managed to squeeze in a quick coffee with some friends which was very refreshing - felt a bit normal for a change.

Michael's day yesterday seemed to be the usual - Thursday night/Friday morning hot/cold sweats and temperature and a bit of sickness. The nurses are wonderful - when I phone up they always have time to explain what's going on, even going into Michael's room and asking if he has any messages for me. Quite bizarre sending our love to each other via the nurses but in the same way you lose any dignity in hospital, you also don't really care what message you pass on via the nurses. I know I've said it before but I just cannot praise the staff enough. I can only compare to what we've seen at other hospitals that Michael's been in recently but whatever is needed, by whomever, is always done so swiftly. He has got the most amazing care at the Churchill.

I have to say I did feel fairly refreshed yesterday - so nice not to have to spend so much time in the car. We spent the evening at my parents - and I must just say a well done to my Dad (and of course Mum who's done all the hard work!) whom himself has had a really tough year health wise. He really has pulled through and last night, even the kids commented that Grandpa was back to his old self. He looked brilliant - long may that continue. Meanwhile, we got home and the good old electrics kept fusing again. In the end, I stood by the fuse box (standing on the downstairs toilet so I could reach it) for a good 10 minutes as I'd already run up and down the stairs 4 times having switched it back on and then everything fusing again. As usual, eventually stayed on and so far no problems. As an electrician already explained when he came round when we originally had the problem - very hard to locate when you can't figure out what's causing the problem!!

It's funny when you're trying to remember your day, so you can write it down, how unimportant things which you wouldn't normally talk about and tell anyone becoming 'news'. This morning for instance I was reading in bed when this slight banging noise came from what I thought was Aaron's bedroom (next to our room). I couldn't imagine what he could possibly be up to. Then I thought it was more Lauren's room, so I went into the hallway to see if I could hear more clearly - definitely not from her room. Then I realised it sounded as though it was coming from above - yuck, rats I thought. But then would rats make such a noise - surely that would be a scratching noise? Birds maybe? In the end I thumped back on the ceiling but the banging just continued. Couldn't stand the noise anymore so went downstairs to look from the garden at back of the house to see if I could spot anything. Me in my pjs, glamorous pair of crocs on my feet in the drizzle - stunning view and I'm sure I must have scared off anything that was there anyway!!! Could it perhaps have been a woodpecker on the sofitts? Weird but outside Aaron's window, the black painted sofitts have all been chipped away or maybe it's just the paint peeling. We'll see if the sound's back tomorrow.

Kids were very excited to be seeing Dad today. Lauren made a beautiful poster saying how brave her Daddy was (that's now taken pride of place on his noticeboard). Quick enough journey and as always for a weekend the car parks were fairly empty at the hospital. I get free parking which is brilliant, although I must say the car parking fees are much less than in our local hospitals. Michael looked ok when we arrived - obviously happy to see the children but again, very hard for him and had to put a lot of energy into their visit. They're older and it's not like they need attention from him, or either of us to keep them occupied but it really is like visiting a patient in hospital who happens to be their Daddy as opposed to visiting Daddy in hospital (not sure that makes sense but I know what I mean!!!). I guess visiting him in hospital is nothing new for our children but visiting Daddy when he's obviously unwell is all new. Maybe they don't even notice - kids are so resiliant.

Shortly after we arrived, Michael felt extremely nauseas, grabbed one of his bowls (just proof reading before I post and realised I'd typed bowel instead of bowls - thought that was quite funny. Could imagine your faces when you read that he'd grabbed one of his bowels) - at which point Lauren and Aaron decided it was time to leave the room. It's not nice to see anyone be sick but do children really want to see their Dad go through this. Well - Nathan had no problems! He didn't actually bring up much - and the Nurse aspirated and it was actually air that came out.

Lauren was highly embarrassed when the Surgeon came in. She was just coming out of the bathroom and happened to open the door as the Surgeon came into the room, and more or less hit the door into him. Nobody hurt - but she couldn't bring herself to then come out of the bathroom and hid in shame. Surgeon was happy with stoma output and how Michael's tummy felt. Michael said he felt a bit bloated and the Surgeon told him that was quite normal from the feed - because as that was going into the intestine, the bacteria (the 'good' bacteria) is working away, which in turn produces gases which obviously causes slight bloatedness. With regard to the infection, some new additional antibiotics were given yesterday for a boost and nothing has grown from the blood cultures so they are still unsure why Michael is getting the temperature spikes. Some further results will be coming back on Tuesday which will confirm (or not) whether it is a virus. If it is, the antibiotics that he is already on are the correct ones but will just be higher doses. If not, could a variety of things. One option is that although the organ is not rejecting, the organ could be 'fighting' against Michael's body or, Michael's body could be fighting against the new organ. The surgeon seemed to thing this was unlikely as there would be other effects - skin rash; colon (more output) and liver (can't remember what effect). Michael is having his weekly scope tomorrow and that should also show if there's any 'fighting' going on. Could also be bacteria - if this is the case they would have to reduce his immunosuppressants (anti rejections drugs) so that his body could fight it off. They have also started to check Michael's stoma output four hourly as well as draining his stomach tube four hourly - all to make sure his outputs of fluids is normal (this fluid output is something that also gauges whether all is ok).

Again he reiterated that all is going well but I know Michael is finding this hard to believe. How could anyone possibly convince someone who is constantly feeling so drained, that this is 'good'. I'll keep my positive face on though - someone has to!

We entertained ourselves with good old fashioned games today - eye spy (until Michael got bored) and the one where you go shopping and have to keep naming all the items everyone buys. Bit of a reversal of roles - when the kids were younger thought it was a good memory game to play. Now, believed it was a good game for Michael's memory. No walking today - he just wasn't in the mood. I'd brought his coat and hat up in the hope that we could have taken him for a wheelchair ride and get some fresh air, but it wasn't to be. I wouldn't force him at this stage - if he was someone that gave up easily, of course I would push him but I know he's a fighter and if he doesn't want to, he really doesn't feel up to it.

Didn't realise he'd been watching every day the DVDs of the kids I'd taken up. He wanted to watch them with the kids - we all had a good laugh, while Michael sat there and cried. Can anyone run out of tears? Have insisted he watch something else and if I find he keeps watching them, I'll have to take them back home.

We stayed for about 3 and a half hours, by which time he was wilting so we left him to have a rest and trekked back home.

For a change, we actually went out this evening. Really thought it would do us good to be with friends rather than have the usual vegging in front of the tv. Firework display followed by supper. To be honest, didn't really matter what we did, it was lovely to be with friends. Obviously with good friends, it really doesn't matter that I'm on my own but it does feel like a long long time since I had Michael with me, without him either feeling very tired, very sick, generally lousy or dragging that tpn rucksack around with him. I do so look forward to having a normal life one day.

And now, having caught up on my blog, I realise I have to be up in 6 and a half hours - how positively depressing. Nathan also went to bed late and was moaning about having to get up for horseriding. I did tell him that he'd be absolutely fine when he woke up - now I've just got to convince myself.

Night xx

Thursday

At last, a chance to sit down and blog.

Poor Michael - looked so forlorn when I arrived this morning. I knew from when I'd spoken to the nurse before I left home that his temperature had spiked again during the night. He'd also just been sick so was feeling rather yuck. Apparently the night time nurse had been a pushover and Michael had convinced her (sure he smiled and apologised!!) around 1am to put his stomach tube on freeflow. When the day nurse came back on duty, it was closed. I could never ever put myself in Michael's position and know how he feels but sometimes he makes me laugh (not funny though) because he knows too much about what's going on and is happy to nurse himself.

His sister had been keeping him company but it didn't look like he was interested in too much conversation. The two of us had a good catch up though.

His enteral feed had been stopped and replaced with water instead as he was so dehydrated. Another venflon had stopped working and a new one was just being put in. Then one lot of antibiotics was injected through, paracetomol and then more antibiotics on a drip.

He was having hot flushes again and the fan went on - I also stuffed ice in the latex gloves and put them on the soles of his feet to cool him down.

Eventually the nurse came to insert the picc line. It was about a half hour procedure, with about the same time to set up. The nurse who does it literally inserts picc and hickman lines all day. I did watch the whole procedure but ensured I didn't have 100% visison so as not to pass out. Fascinating - they do an ultrasound so they can see which is a good vein to go into. Unfortunately, Michael doesn't have many good veins left but she did find one. Couldn't really explain exactly what she did next but there seemed to be lots of blood, extremely long needles and a bit of wincing from Michael (only from the local anaesthetic). Two lumens (tubes that go into the vein) - one for bloods, injections, etc and the other for tpn (which they are still hopeful won't have to be used). Can't imagine how long it will take for the bruises on Michael's arms to now clear up. He was waiting for an xray before the picc can be used just to check all was in the correct place.

Just before I left, the water going into Michael's enteral feed was about to finish and the food was to restart. He feels quite comfortable now with this - which is excellent news and the more feed he can tolerate this way, the more unlikely he is to need tpn. The other positive news is that his citrolene levels have gone up from 25 (last week) to 45. This is the levels which show how much his bowel is absorbing - so the higher the number, the better.

So now that he's got his picc line, its another two weeks of antibiotics. The Surgeon spoke to Michael today and he feels all the little 'floating bugs' are in his joints, which is why Michael feels flu-like, with very achy joints.

By about 2.30pm, Michael started to feel a little (miniscule) bit better. I coaxed him out the room for a walk down the corridor. Would have quite liked to have wrapped him up warm and taken him for a 'ride' in the wheelchair but as he was waiting for the xray we couldn't wander off. While he was on a roll, we went back to the room, I washed his hair, he shaved and washed. And then, my Michael was back in the room (well more my Michael than when I'd arrived!!). Think it also made him feel a little bit more like himself and he even sat in the armchair rather than climb back into bed.

In no time at all, it was time to set off back home. Left him with the nurse aspirating his stomach tube (which is now always firmly closed!!).

Really is a rollercoaster ride - was never keen on theme parks!!!!

Night xx

Wednesday Evening

Left Michael sitting in the chair, trying to finish swallowing a 10ml syringe of pink sickly fluid - the one that's meant to coat the ulcers. The nurse was being lovely and patient - as he was heaving, she was telling him to relax and getting him to rinse his mouth with lucozade (well he's not allowed to drink it now). Hope he just kept it down.

Before I left there was some discussion about his stomach tube. Michael understood it that it had to be closed for 4 hours and then could be on free drainage. I thought the Surgeon said no more free drainage and if necessary after four hours of being closed, he could have it aspirated (drained out). He was not too happy with that but how will the stomach ever learn what to do if it keeps be drained? And there was me hoping I could cheer him up.

All calm at home tonight, except the electrics again. Had about 10 mins of the house continually fusing - thought it was the washing machine again, and had to go through all the fuses on the circuit breaker to see if I could locate the one that was fusing everything. Absolutely no idea whatsoever but everything is now working again - washing machine just finished and Michael will now get clean pjs tomorrow!

Night x

Wednesday - 2pm

Scan was clear. Just another 'lonesome bug' says the Surgeon so back on the antibiotics. Should also help now that hiss bowel's getting some nutrition and having to work as that's more protection from the bugs getting in. Hope they start the antibiotics soon - he's having a terrible day (although apparently not even prescribed yet - and more than likely won't start still tomorrow as that's when he's picc line goes in).
Surgeon has also insisted 'nil by mouth' to give the ulcers time to heal. Michael has been drinking and now it's back to swilling - not happy :( While I write this he's gearing himself up to taking 3 tablets (only thing allowed orally). But the other thing the surgeon insisted was to close the stomach tube - because he's been feeling so sick, he's left it on free flow again but that's just confusing the stomach by draining away everything. Tablets just gone down the hatch!! Tube got to be closed for at least 4 hours - and then if Michael's feeling really awful (and its got to be really awful!!!), clamp can be opened and drained. So as well as counting the hours until his next anti-sickness, also counting until tube can be opened!

Scan also showed lung back to normal. In fact never knew it was anything but normal!! Apparently its usual after ops for it to be a little collapsed - but now its back to fine.

Picc line going in tomorrow - under light sedation, in the room. Maybe another technique for me to learn? Michael had one of these when he first went on tpn - its less restrictive than a hickman, and is placed in the lower part of the upper arm. He's having two lumins (they're the bits you inject through), just in case the tpn has to go back up. You can't have injections and tpn going through the same line. Hopefully tpn will not be needed but if it is, just saves him from having another procedure. The picc can't come soon enough as another venflon is about to collapse. Michael's poor arms are black and blue.

This most probably all sounds like things aren't progressing and at the moment that's how I feel. I was so positive yesterday that it was going to be the start of moving forward and then the bug returns. The Team have stressed that this is not a step back at all - it's just the process it takes and he's doing just fine. Guess I have to keep on being the strong one and motivate Michael - although I don't think there's much I can say that will motivate him today.

Justine

read my blog:www.the-transplant-wife.blogspot.com

Wednesday midday

How guilty do I now feel for taking my time to get here? Just as I arrived in the room, Michael was being whisked downstairs for a CT scan. His temperature spiked again yesterday, around 5pm, and hasn't gone down since. So yet again they're looking for an infection - assume they're looking for collections of fluid. How many times?? Everytime I hope things could move forward, we seem to take a further step backwards.

Sitting outside the scan room - takes about 10 mins and then we'll go back to the room and wait for the results. Poor Michael looks so hot, sweaty and exhausted.

Feed did go on last night - I think with all his energies taken up with the temperature, and the continuing sickness, he seemed to cope ok.

Will keep u posted x

Justine

read my blog:www.the-transplant-wife.blogspot.com

Wednesday morning

OMG am I tired this morning. Went to bad last night with a stack load of stuff on my mind and couldn't fall asleep. Then at 3am I heard the dog whining - went downstairs to see what the problem was and there he was contentedly sitting in his basket - guess he must have had a doggy nightmare. Then at 3.50 he starting whining again, which is very unusual for Waffle. Looked at the phone in my room and realised that someone was calling - the phone was actually off but I could see the light flashing. Should have remembered that Waffle hates the ansaphone and that's why he was whimpering. By the time my brain and registered all of this, the person had hung up and the last number was 'witheld'. Well, as you can imagine, my brain then kicked started into overtime and I thought the hospital had been trying to reach me. I dashed downstairs - and really did trip over the toy in the hallway (Nathan had been clearing out his cupboards and some old toys had been sitting there waiting to find a new home!) and came downstairs to check the ansaphone. First message (the one from 3am) was an automated (very irritating) voice and then the most recent was a keyholder call for Michael's parents' flat. Thank goodness for that - as I'd run down the stairs, all manner of things had shot through my mind. It's quite amazing in such a short period of time what games your mind can play with you. Sigh of relief and then the worry of why the alarm Company couldn't get hold of Michael's parents at 3.50 am - surely they should have been tucked up in bed or maybe like me, they turned the phone off. Anyone, I called and all was fine - they'd just had a power cut. Meanwhile, still doesn't answer the question as to why the alarm Company's first call wasn't to the occupiers!!! But then I couldn't get back to sleep. All the things that had been worrying me when I'd been trying to fall asleep last night, were back to haunt me - as much as I tried to tell myself that things always seem worse at night (that's what I always tell the children when they can't sleep, in the hope that they'll then nod off!!), it didn't work, and when I finally fell asleep, it felt like the alarm immediately woke me up again :(

I have to say, now I really am on go slow and can't kick myself started this morning. Michael's parents are going to the hospital so I've decided not to rush up but now I've been pottering at home, it would be quite nice to stay here. I'm fine when I'm in the car, but I so can't be bothered today. Want to be with Michael but two hours in the car is soooo hard and I'm not sure whether it's the car or just the amount of driving but I seem to always have a neck ache. Each time I get in the car, I adjust the seat to see if it's more comfortable and still my neck aches. With petrol as expensive as it is though (although I have now found a petrol station under 130 per litre), it just makes sense to use the little car!!

Well perhaps a shower and then a dog walk will give me some energy. Do feel at the moment that I count the hours until bedtime!

Tuesday Evening

I had to leave a bit earlier today as I had to pick up Lauren from school as she was playing in the football team. The score couldn't possibly be worse than their last game (7-0) - and yes, she found her football boots.

When I left, Michael's feed had not yet been put up.  He had discussed it with the Nutritionist and it was agreed (under sufferance) that it would start at 20 ml per hour and hopefully, depending on how things go, increase by 10ml per day.  The Nutritionist has always said it's all got to be with Michael's agreement but if he had his own way, he'd start at 1ml and increase by a further 1ml a day.  We both tried to encourage Michael by showing him how much 10ml actually is - about a small gulp of lucozade (which he happily takes).  It's obviously a real fear for Michael as he is so worried about being sick - and she is fully aware of this and that's why they'll take things slowly.  This really is nothing unusual.  As I've said before - his citrolene levels are really good which means his intestine is ready to start absorbing things.  I'm hoping when I get there tomorrow that he'll be coping well (really really hope).

Sometimes I ramble on expecting everyone to clearly understand everything.  A friend asked me which part of Michael's intestine he actually had transplanted and what original parts he's got.  Basically, he's never had any of his large intestine removed, it's always been the small intestine and after last year's ops he was only left with 70cm (the average length usually being 6.9m).  In the transplant op, the hardest thing was to remove the small intestine which was a hard mass which was never ever ever going to start working again (so much for being told after last October's op to 'go home, carry on your life and maybe things will start to work again!).  They then had to remove a small part of the large intestine so the new organ would fit in.  Please feel free to ask anything else I haven't clearly explained :)

We did manage another walk before I left.  I was pleased to leave the warmth of his bedroom - felt lovely to be in the cool corridor.  Michael though was freezing.  As we walked along the corridor, you can't help but look into the other patients rooms and just see how everyone is progressing. There are some funny sights and I guess when people walk past Michael's room they've seen him do some odd things (remember the fan on his backside a few weeks ago?') - obviously I wouldn't dream of sharing any of these funny sights - you know, patient confidentiality!!! Although here's a teaser for you - a sign on someone's door 'sips only by door' - any ideas what that one could mean?

Michael's been hounding me for the last couple of weeks to see if I could bring him a dvd up of Nathan's Thursday morning Bar Mitzvah call-up.   I'd put it onto the computer ages ago, with some music - have to say I was most impressed with my handiwork.  Putting it onto dvd was another thing.  I've tried it in the past, downloaded various things from the internet that promise to easily transfer movies to dvd - but these things are never as easy as they seem.  Anyway, at last I managed to do it, tested it on our dvd and it worked - fantastic. While I was in the flow, I also put a dvd together of the kids singing at Aaron's Bar Mitzvah.   Well I'm not so sure it was the best idea but Michael had been hounding me.  The tears welled up as soon as it starting playing and I knew it certainly wasn't because he was amazed at my talents.  Michael's generally a very emotional person and  that's just exacerbated at the mo.   I think it was tears of happiness to watch it all again and definitely tears of frustration that he's where he is now.  Up until then I think he was in a brighter mood.  Tomorrow I think I'll encourage him to watch his favourite West Wing instead.

I really am hopefully that this whole feed going into the intestine will be a positive step forward - and now that they've found these ulcers and are starting to treat them - that things will start moving in the right direction which in turn will make Michael a little more comfortable and more importantly confident that things are progressing.

We'll see what tomorrow brings.

xx

Tuesday

What I would give to be able to walk to the station and sit on a train to the hospital. I seem to know every inch of that motorway and as quick as the journey generally is, the thought of cruising along it again does not fill me with joy.

And how is it kids makes such a mess when they clean their teeth? Has taken all my strength to ignore the toothpaste over the sink, taps & mirror and hand towel on floor. As much as I wanted to clean it before I left, I knew Michael was clock watching as yesterday he'd noticed I arrived a bit later. So I ignored the mess but have decided the kids can now clean it themselves (thank goodness I have the other bathroom).

Naturally all was not as expected yesterday. Apart from the delay in getting it all done, they also discovered 3 ulcers in his stomach. One is a large one (acute trauma ulcer) and then two smaller ones. This will definitely be a cause of the sickness Michael has been suffering. The stomach now needs as little stimulation as possible to stop the acids and alleviate some of the sickness. Michael will also be given another liquid to swallow (something like pepto bismol - pink liquid) which will coat the ulcers and start to heal them. Could take around 15 days for them to clear up.

So meanwhile, they are due to start the Enteral feed today - haven't discussed yet the amounts. His tube into his stomach has just been 'closed' as it has been on freeflow since yesterday. Michael's also not allowed to eat and drink anything - can suck on a sweet if he gets dry, again to stop stimulation of the stomach (so who's going to eat the crisps and sweets on his table???).

Can't believe that one of the nurses came into the room to help the surgeon with something, and then knocked a bowl full of ..... that Michael had just emptied from his stoma bag. Think he thought he'd got away with it and that no one had noticed but I was there to snitch on him to Michael's nurse who in turn made sure he cleaned it all up!!



Justine

read my blog:www.the-transplant-wife.blogspot.com