Well, at last he's home. It was so nice to think this morning that it was going to be my last Oxford routine. The thought didn't last too long as on the way, Michael called to say he already needed to be back for bloods tomorrow and then again on Friday. Guess I can't complain - don't have to go back on Thursday!!
When I arrived, the lady from the company who supplies the pump for Michael's feed was there giving detailed information about the equipment and how to use it. I had a quick catch up session. We did query a few bits of information - we had been told (not mentioning any names - but you know who you are!!!) that if the tube became clogged, putting coca cola down it often cleared any problems. We were told that soda water was better as coke tended to corrode the tube!! Lucky we asked - although coke has now been advised by two other people. Anyway compared to tpn, it's all fairly simple. Same idea, has the feed overnight but if he needs to go out, there's a little backpack for the feed to go in (a streamlined version of the large tpn bag). All sorted, and left with loads of supplies.
Next was a scope. He actually hadn't had one about 3 weeks. Guess that's good that they didn't feel the need. Anyway, a biopsy was taken and we'll wait for the results. Maybe they'll have them by the time we return on Friday? Once they've scoped, a new stoma bag has to be put on - Michael's doing amazingly and coping really well with this now. Seems to have overcome his 'problem' with the whole thing. When changing the bag there's a 'base plate' that goes on first. Michael has a template which was cut a while back to fit perfectly. This template is used each time a new base plate is needed. After his scope, I cut the base plate using the template but stupidly didn't put the template away immediately. We had to laugh when one of the newer nurses picked it up, and tore it apart. He had absolutely no idea that we needed it. Normally I wouldn't mention such a faux par in the blog, but as soon as he did it I did tell him I couldn't resist blogging that one (sorry!). Thankfully no harm done - and at least Michael feels confident enough with the whole thing that he could laugh as well. He does now have a new template.
They then asked us to just hang around for an hour - apparently they like you to 'rest' after this procedure. By the time we'd checked we had everything, loaded the car up and said our goodbyes, the hour was already gone. As ecstatic as we were to leave (although I'm sure Michael was much more nervous than me), it was very sad to say goodbye to such a wonderful team. I felt quite emotional because we really had been on a long journey together - from the moment we had the call and arrived at the hospital in the middle of the night, we felt that we were part of a very special caring team and all of sudden it was that bold step of leaving. On the other hand, we will be back tomorrow!!
Michael has to return tomorrow for more bloods. Basically his tac levels (tacromilus - anti rejection) are still too high - this means he has the shakes (not fantastic now that he's back to self medicating his own intravenous drugs again :)) and it also means his kidney function is not perfect. Therefore this needs to be closely monitored. It would obviously have been easier for him to stay another night but he'd already prepared himself to come home today and I don't think there was anyway I could console the kids if they came back from school to find Daddy not at home. So back we go tomorrow. They did ask if we could get there fore 8.30am - I did explain this was impossible as it would mean we'd have to leave home about 6am because of the traffic at that time. We'll aim to leave at 9am and hopefully won't have to wait too long - now he's not an inpatient we have to 'slum it' like everyone else in the clinic and just wait our turn. Then it's back again on Friday for more bloods. I know he has his weekly appointment next Thursday but I'm not sure if we'll have to return before then for any more bloods - assuming that will depend on Friday's results.
Because of the kidney function, I have been subtly giving him drinks the whole time. I know if I didn't do that he'd never pick up a glass at all. We did all sit down together for dinner tonight - he did manage two fish goujon. Whilst writing I've just realised I didn't 'offer' him the remainder of the trifle that he started when we got home this afternoon. I'm just going to have to get into the routine of constantly (and gently) reminding him of food. Funny how I when I walk into the kitchen I'm always drawn to the fridge and feel it's somehow rude not to eat something. Michael on the other hand doesn't have that weakness - think we need to trade eating habits!!
So my lovely large bed doesn't seem so large now that Michael's back home. He's just fallen asleep - which is great because I think he was worried he wouldn't be able to get comfortable. In hospital he was using our V shaped cushion which propped him up quite high as he said he felt more comfortable. When we got home I put the cushion outside for an airing - trouble is I forgot about it and now it's also had a wash. So he had to do without that and just has two pillows - is lying fairly flat and has managed to nod off. Just hoping for his sake that he does manage to sleep through the night. The great thing about this feed that he's now attached to is that it doesn't make you pee the whole time. That was a major problem with tpn - as tired as he could be, he'd always have to get up to go to the loo. It's been a long time since Michael's slept a full night sleep - so I do hope tonight will be the start.
It's been lovely having Michael back, although from the moment we arrived home, the time we spent together was different. When we were at the hospital together we had no distractions but once your home, everything changes. Before the kids came home, we tried to sort out where all the supplies should be stored. I really was against all the wheelie drawers, which I'd put in the garage some weeks ago, coming back into the bedroom as they took up so much room. Once that was sorted, kids were home, after school activities, schlepping and all too soon it was bedtime and we hadn't really spoken. Guess that's life. Have to say did feel quite rejected when the boys came home. They rang the doorbell and were fighting to get in first to see Daddy. Me? I was completely ignored.
Can't say I'm looking forward to the drive back again tomorrow. Just hoping we won't have to be there too long.
Thank you for all your lovely messages of support for Michael's 'homecoming'.
Night xx
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