Zone Doubt, a.k.a. 'Surreal Я Us'...
Joules, trusted by... dozens... to make a drama out of your crisis...
:: JAT :: WaveWrights :: Publications :: Joules... on writing ::
I live to write. It's not wise to get in my way.
August 2011: the earlier posts in this blog are a mess, the result of me changing the format some time ago. I'm working to edit the entire blog from the beginning, but with over 4K posts and sodall time for such luxuries it's going to take a while... [30/04/14 - Now reached 24/1/2004 - p 41 in the list]
If you come across any words you don't recognise in this blog, take a look at the Taylorspeke Glossary in the left-hand infopane, you'll usually find a definition there.
Sunday, September 21, 2014
Sunday. Gave Kai his morning meds/washed the towels/got the crickets into their tank/watered Feather and Rosa/prepared and froze the homegrown pears/got breakfast for K&K/did the shopping/made lunch/sewed Kai's wardrobe curtains and pelmets/made the first of the new organza inner curtains for our room/ordered tomorrow's taxi/made dinner/collapsed...
I need a 60 hour day.
Or a holiday, that would be nice too...
Kai is very happy with his new room, although he hasn't found a desk he likes so is managing with the two old ones - he has much more room now. All told, it was a great idea. He's still feeling awful, of course, and has lost almost all his hair (but not quite, and it looks like the sparse strands he has left are going to stay. Planning to trim them close to his head tomorrow, at the moment it all looks a little odd) but is more alert and himself than he's been for a while. Fingers crossed his counts are still improving tomorrow.
Friday, September 19, 2014
Kai's home. He feels pretty awful, is desperately tired, and his hair is coming out in handfuls - literally, he sat with the bin and pulled it out (well, if he doesn't we're only going to have to clear it from his pillow/bed/bedroom floor for the next few days...) But his counts were back up today, the drs says he's "platelet independent" now (must ask what that means on Monday, as I didn't think his platelet count was high enough) and they're happy for him to be here.
Now have nine new meds to learn to dispense, oh joy!
Oh, one minor blot: his immune system is really now gone - he'll need all his childhood vaccinations again, and his system will have to reacquire his resistance to all the usual cold bugs etc - so for at least three months we can't have anyone come into the house (and it would be sensible for us to shower and change if we go out in company before being near him again). We've managed this before, when Wendy and Sue and GoodTwin have visited, but this is just a heads-up for any potential autumn visits.
Heh, that wasn't very eloquent. But I'm knackered, so please excuse me.
Thursday, September 18, 2014
Quick check in:
I forgot to say Kai was moved down to TYA on Sunday (I think it was) - back to the really nice room with the picture window and dedicated desk, so the last few days have been much more comfortable for him. His counts today were a little down on yesterday, except for platelets, which were up to 48, but stopping the G-CSF most likely accounts for that. WBC is still way up, which is great.
Still hoping to be discharged tomorrow if all goes well. His room here is basically ready - I still have the wardrobe curtains and the pelmets to make, and everything needs to be tidied up and put away, but Kai will need to do that himself.
Oh, and he's started losing his hair... He's not bothered, but I've started looking for a hat for him. Fox related if I can find one. Will check out Etsy and Redbubble at the weekend.
Wednesday, September 17, 2014
Update time while I take a break from painting/organising Kai's new room.
We were told that the usual time to see changes was Day 14 after the transplant: that would be Sept 16th. For us, things started happening on Day 13 (my lucky number...)
Have some numbers! (Sorry about the formatting, tables have been deprecated and I don't have the energy to hunt down the correct coding... WBC = white blood cells, RBC = red blood cells.)
Normal Range Sept 12 Sept 13 Sept 15 Sept 16 Sept 17
WBC: 4.00 - 10.00 0.02 0.03 0.36 3.22 7.95
RBC: 4.50 - 5.50 2.47 2.50 3.24 3.32 3.59
Platelets: 150 - 400 11 6 22 28 38
Neutrophils: 1.50 - 7.50 0.20 2.50 6.04
In short, this means the transplant has engrafted and Kai's bone marrow is making white blood cells and neutrophils again. And very quickly too (but then, I always did work at speed!) It's being helped by the injections of G-CSF, but that isn't what's causing the increasing counts, that's all him.
This is the first hurdle over - there are still plenty of things that can go wrong. The next potential problem is GvHD (graft versus host disease) which can be very nasty. However, the team is so pleased with how things are going that as long as nothing negative happens in the next couple of days, Kai can come home on Friday.
For the next few months we'll be at the day unit at least twice a week for check ups and reviews of meds - and he'll have to take penicillin for the rest of his life as his spleen won't be working properly (I didn't quite catch why, will try to find out) and certainly for the next year he'll be on a variety of different drugs. However, so far it's all good. Please keep the positive vibes/'fluences/wishes going, it's all helping!
... not sure now whether to go sit on the bench at the top of the garden and cry a year's worth of held-back tears or run around the house screaming... Ah, actually, I don't have time for either, need to carry on upstairs. I've now got five days less time than I was expecting to get the room ready and everything scrubbed and sterilised again...
Sunday, September 14, 2014
Room 12's shower drain was blocked: they improvised and built a towel fort around it so he could shower, but all the same... and today when I arrived he was sitting in rm 4 while they had an engineer in to sort out the plumbing as the loo was playing up too. [sigh] It's the building's infrastructure: the day unit is all new and everything in the BHOC has been upgraded, but the plumbing systems are older and they aren't fully up to the job of coping with the current use, and it's not the sort of thing that can be quickly fixed.
He's back in rm 12 now, hopefully with the problems solved and the room deep cleaned. He's aching (prob the result of the G-CSF they're giving him) and generally feeling awful, and on Wednesday (I think it was, the days are just running together now) he had his first reaction to a blood transfusion - swollen lips and eyes and a rash. Not as bad as the platelets reaction but still frightening. It may just have been that one unit: he's been OK since but they are giving piriton and a half dose of hydro-cortisone before blood as well as before platelets now. If it happens again they'll move him onto washed blood (I had no idea that could be a thing but Kai tells me if it contains protein, it can be washed). That procedure takes as long as washing platelets though - min four hours - so we're keeping fingers crossed it was jut a one off.
Overall, however, the whole thing could have been much worse. They've told us this week is the absolute earliest we could expect to see any improvement, so will report back as and when.
The view from rm 12's window.
At home I've finished the painting in the small room and we're moved in (the bed is the other way around from the large room and I didn't sleep at all well last night, kept feeling like I was falling out!) and the large room is slowly taking shape. All Kai's stuff is in there, and tomorrow I start painting the teal wall pale blue, so it's all light and airy in there. I still have to sew the wardrobe curtains, oh joy... He's going to treat himself to a new and decent desk - possibly a corner one, he likes those - once I've measured up the available space. So that project is coming together nicely.
Flowering lithops ('living stones'). Cute little succulents.
Tired and hoping for an earlyish night...
Tuesday, September 09, 2014
Checking in briefly - please assume that if I don't post, everything is just trundling on and we're still waiting to see what happens...
After I left today Kai's en suite plumbing went up the creek again and he's now in room 12. Hopefully to stay. That room has a lovely view out to Dundry and better wi-fi!
Saturday, September 06, 2014
All Kai wants to do right now is get through this couple of days of cyclophosphamide: he can't eat (is having build up drinks instead) and feels thoroughly miserable. It finishes tonight, I think, then he's onto tacrolimus, which - fingers tightly crossed - won't affect him so badly. He's been prescribed codeine now for the pain in his neck at the incision site: it really hurts to move...
After finding a (licked clean) KFC box in the garden a few days ago, this in the honeysuckle plantpot by the front door, and one of Qyun's old balls moved from the meadow to the rockery, we've decided that the foxes aren't bringing us presents: they're leaving their toys strewn around their safespace!
Friday, September 05, 2014
This is the three lumen central line. It's inserted through an incision over the jugular (it'll be about a week before the stitches come out). See why it terrifies me?
Afterwards Kai was feeling fine. Then they put the next lot of chemo through and fine was replaced by awful again...
Thursday, September 04, 2014
It's been a hell of a day.
Had to pick up more pale blue paint before heading into the BHOC, so it was with a heavy rucksack I got out of the lift and was nearly bowled over by the smell. The end of the ward, where Kai is, had a severe plumbing problem - and by severe I mean Kai couldn't use his en suite as there was raw sewage coming up out of the shower drainage hole...
Everyone was running round panicking, getting services in to sort it out and shifting patients into clean safe rooms. I helped Kai's nurse move him up to room 16 (colder, but larger and with a nicer view): we shifted the furniture first then she took him up in a wheelchair (he was white as the proverbial sheet and shaking like the proverbial leaf, right in the middle of a cytokine attack) and got him dosed up with parrots and an anti-bio going through. It took half an hour but he finally stopped shaking and started feeling a bit better, and says on skype now that he's feeling better again, for now at any rate.
He slept a lot of the afternoon - didn't get much last night - which helped, I think. Tomorrow he's being fitted with a central line, and they want him to have platelets first - only he can't take hydro-cortisone for another four or five days. I think they're keeping epinephrine on hand in case of a reaction, but I plan to be there early so I can keep an eye on him.
Wednesday, September 03, 2014
Quick update, very tired.
Kai woke up about 2 am feeling like he had flu - yep, cytokine storm, though more of a shower than a storm, so far anyway. He's achey and miserable, but his temperature and BP are normal (though his pulse was very fast: they took an ecg to check there was no underlying problem). It's worse than he was hoping but a lot better than it could be, so far. He's taking parrots and has had anti-bios, and is spending a lot of time asleep or dozing, which is probably the best way to cope, sleep through it. His appetite is OK so far.
Back in tomorrow - will report back later.
Tuesday, September 02, 2014
20.45: Later edit: down here.
Well, today's the day - we hope. Last night Kai had a temperature and was getting intravenous anti-bios - again - followed by something for his low blood pressure (!!) and then the normal platelets. Platelets were nearly through when I had to get offline...
Chemo. Yes, there are four different things on the go here - hydration, MESNA (which is a thing that protects the bladder, we're told) and two different sorts of toxins...
Catchup. As I've said, I was told about the usual side-effects of the injections, overall aching (though no-one said anything about the intensity or the fact it could be anywhere, including for me my jaw, cheekbones and up around my ears) but no-one mentioned the other side effects - constant nausea and complete loss of appetite (though since they cancelled each other out I suppose that was more or less OK) and generally feeling bloody awful. And come Sunday the side effects of the chemo finally hit Kai too, so we were pretty miserable together...
In contrast, the actual apheresis yesterday was a doddle. Yes, it was uncomfortable - big needle in the crook of my left arm to remove blood, small one in my right wrist to return it, and sitting tilted so my weight was on my lower back (ow) for the three and a half hours it took was no fun, but the only side effect was a general tingling, which was, apparently, calcium deficiency corrected by chewable calcium tablets and a small intravenous unit of calcium phosphate (I think it was phosphate...) Which, as is pretty much the norm for us, took them three bags and two machines to administer, and even then they had to push it through manually. (What is it with me and machines?) Anyway, the actual harvesting was noisy but painless, and it was fascinating to watch the bags fill, greenish-gold plasma and pink-tinged cream-coloured stem cells (I assume it was just the stem cells...)
Almost as soon as they started the procedure I started feeling better, and apart from being completely exhausted last night I was fine. And to my relief they harvested 'more than enough' cells to provide the transplant material, so I don't have to have it repeated today.
Just hope the right stuff is in there...
Afterwards I went down to radiotherapy with Kai for him to have his TBI, which was relatively quick and painless, then back to his room. I couldn't stay much longer, I kept nearly falling asleep, so headed home.
And today I feel fine - a little achey, but I'd expect that. Kai is now on skype (9.45) and feeling a bit better than yesterday - his temperature has dropped too, so please keep fingers crossed. No news yet when the transplant will be - I assume as soon as the lab have prepared the cells - but I'm hoping to be there. Heading off in after I've got the shopping.
Sue, card arrived, thank you. Will take it in.
Lin, forwarded that lovely trawling, but unfortunately it looks like Kai can't receive emails (the connection is a bit glitchy on that side of the building: they think it's the lead in the structure of the old radiotherapy rooms). Will skype everything individually.
Possibly more later after I've visited...
Arrived back from shopping at 11.35 to find a skype from Kai at 11.09 saying, "OK, cells 'any time' so will get time in a minute". Cue mad scramble to get to BHOC in time, and I arrived as they were just being delivered...
The atmosphere was so positive, it almost felt like a holiday. Everyone was so cheerful and upbeat, we couldn't not feel the same.
In the scramble I forgot my camera - these are from my phone camera, which isn't so bad. This one has the donor/recipient details (if you can read them).
At the beginning...
... and at the end, an hour later. The bag on the left is saline flush, which they used to flush out the last of the stem cells in the bag. 'Precious', they said. 'We're not letting any to go to waste!'
It was very strange. And oddly anti-climactic. It looks like raspberry slushie... If Kai is going to get a reaction, it's usually within the first 30 seconds, so we both sat and watched, and everything was fine, and he looked at me and said exactly what I was thinking: 'I don't know if I should sit and watch this, or just go on with what I was doing...'
It's not every day you get to watch your mum's cells (your cells) being transfused to potentially save your (son's) life.
Eventually we did a little of both. And it all went just fine, with no reaction (well, at the end his temperature had dropped to perfectly normal) and him feeling fine too.
This is great, of course, but it's just the first stage. The next possible event is the cytokine storm - and before you check that accurate but quite frightening link, please understand that this is so normal with transplants that we were told what to expect when - not if - it hits. The BHOC have everything immediately to hand to deal with anything that happens, and Kai will be monitored closely for the next however long it takes.
Then again, when have we ever done the expected...
I'm back in again tomorrow, will report back later. So far so good, but there's a very long way to go.
Friday, August 29, 2014
Edit: and then I forgot to say! Asked to have my BP taken, and to my joy and relief it was a perfectly normal (for me) 140/93, on a normal day when I wasn't overly stressed nor overly relaxed. It's been around that now for a month: I won't be able to get it down any further without losing more weight - which is planned, but not before Monday! Anyway, point is there now no reason for any hesitation over me donating. This is very good.
Wednesday update... I was sitting with Kai when head nurse Nick popped down from the day unit with a puzzled look on his face, asking if I was in for anything. I said yes, to visit Kai, but I'd see him tomorrow at 4 for the first of my injections....
[sigh] Long story short because I'm tired, my injection schedule had somehow not reached the day unit (where the actual injections are supposed to be done). [headdesk] These are pretty bloody vital for the whole procedure to go ahead. So after a bit of panicking it was decided I should get to the day unit at 11 on Thursday morning and they'd administer the first dose - and take it from there.
At least the pharmacy sent the right stuff. Injection was no bother (well, there were two and the second one pranged a nerve, so that was a bit ouchie, but overall it was a couple seconds of discomfort and back to Kai, whose room is at the other end of the corridor.) I was warned it could cause aching, so I was anticipating it (I have constant aches anyway), and last night it was distinctly uncomfortable. The second one this morning has left me even more so, even with taking parrots (can't take anything else on the BP meds) so I am not anticipating a good night. But it's finite. And the chemo is now making Kai feel pretty poorly, so I can hardly complain...
Oh, if anyone would like to send him a card, his address is:
Foxes and funnies (especially science related ones) would be most appreciated!
Wednesday, August 27, 2014
So, after sodall sleep on Monday night, yesterday we headed off in to the BHOC at 9 for the appointment at the Brachytheatre at 9.30, for Kai to be measured for his TBI (total body irradiation). Estimated time was half an hour, but it only took five mins, then we headed up to the day unit for review and admission (that was scheduled for 10.45, so Kai had a book ready...)
We arrive at 9.45, to have Hilary (one of the senior nurses in charge of the day unit) usher us into one of the consultation rooms, saying, "I've just tried to ring you - the anaesthetist was here at 8 am looking for you...")
Turns out we should have been told that Kai was due to have his PICC line put in early in the morning. (Except he has to have platelets before anything like that and yet again the platelets weren't ready, the lab claiming again that they hadn't got the bloody standing order for them that the BHOC doctors keep ordering, and they wouldn't be ready until midday at the earliest and more likely later. I can see I'm going to have to make another official complaint. Like I need the hassle.)
I pointed out we'd had nothing from the transplant team to let us know the schedule. Nothing at all. We should have had a letter - or at least an email - with all the details.
Turns out the transplant team coordinator's father was suddenly taken ill and he apparently just up and left and flew back to India without fucking handing over to anyone. Which, as the consultant in charge of Kai's case said, was completely unacceptable.
Damn right it is!
So, all in all a great bloody start.
At least his room was ready and is quite pleasant, with a nice view (even better one from the vestibule, out over the city and out to Dundry and Kingsdown). So we got him settled, he finally got his platelets at 4 pm, then went straight down to have the PICC inserted (I went with him, it was quicker and easier than the first time, but then we knew what to expect), then it was back up to his room and dinner (sausage hotpot with chips and green beans - nice big portion, smelt great and Kai said it was very tasty, so at least I know he had a decent meal last night).
They hooked him up to a hydration fluid all last night (eight hours) which meant he didn't sleep very well, and apparently the lab are several hours late with his first batch of chemo this morning. That's less urgent, as there's some leeway now he's actually been admitted. Still annoying though.
However, we now have the schedule, and it is, as one of the doctor's called it, pretty brutal. But we feel fairly positive about it all, and Kai said he's just going to fight all the way. But he wants me there as much as I can be, so my time here will be a bit hit and miss for a while. I'll report back when I can.
The actual transplant will be on the 2nd. Your positive thoughts and 'fluences are still most welcome: quantum entanglement is random but things do get through...
Saturday, August 23, 2014
So that's the new Doctor. I like. I like very much. And that ep had the ambience of some of the really creepy first series episodes too. Unfortunately next week is the bloody pepper pots again [sigh] but we'll see.
We really need to prune the apple tree this autumn, the fruit is so abundant it's dragging the branches down to the ground...
Things we've watched recently... Noah (on Filmflex. Weird. Tries to be all things to all people and doesn't really succeed at any of them), Divergent (disappointing), Captain America: the Winter Soldier (basically bought as we're collecting that entire 'verse of films. It's OK, well done, enjoyable, but Cap was never one of my favourites.)
Other news - not much. Packing away the extraneous stuff in our room continues apace, and I had my hair cut today.
Thursday, August 21, 2014
Decided, now I have the new computer, I'd try to get the speakers working again - to drown out the almost-nightly shouting and swearing from next door, if nothing else: last night I could still hear it in the bedroom (though admittedly not well enough to hear every word, unlike downstairs).
Three months after I bought the previous computer, the speaker software packed up, and I've only had music through the headphones since - which is highly inconvenient with wet hair. I packed away the transformer and cables, and forgot about them until recently. Ken said they were in the big box of cables up in his cupboard, so he looked it out for me yesterday...
Kai and I spent an hour and a half digging through it (I'm pretty sure half the cables can be ditched!) but couldn't find them. The old Netgear transformer worked - but the only cables we had were too short. I'd pretty much resigned myself to buying new when Kai said, "I'm sure there was another box..."
So I scrabbled through the cupboard and found a box with the old phone cables and Ken's soldering iron.
... and a box labelled 'Joules' speaker cables and transformer'.
Five minutes later I have sound! Oh, this is nice. Doesn't have to be very loud to make everything else unhearable, either (although adjusting the three different volume controls all to max will shake the windows. If I ever feel like it. [g])
After the transplant it's going to be a while before Kai can go out, once he's home again, so on Tuesday we went to Severn Beach.
As usual the train was pretty much deserted, and the weather sunny, cool, breezy with scattered showers - actually perfect as far as we're concerned.
We walked out as far as The Pipes, further than last time and Kai had a lot more energy, striding along like he used to. We sat and had lunch on the headland - and then noticed that the rain in Wales was getting closer...
(I still get a kick out of standing in England and being able to see another country across the water!)
... We - mostly me - were distinctly wet by the time we got back to the station. But it was a fantastic afternoon, and Kai really enjoyed it, and he wasn't too tired the next day, so that was all good.
Yesterday I had to get into the BHOC to collect Kai's aciclovir (forgot to do it on Monday) so took advantage to pop into Primark to pick up some new trousers for me (the sweat pant sort I usually wear because they're so damn comfortable) since my current ones now won't stay up. To my delight I've actually dropped two sizes! Going to pick up a couple more while I'm in town next week Ken could do with a new pair and Kai goes through his like no-one's business...)
Today it's more general tidying and blanching/freezing the mange tout and beans I managed to grow.
Oh, and we've decided that we're swapping rooms: Kai uses his as his office and really doesn't have enough room for his desk, table and computer along with bed, chest of drawers and all the other paraphernalia in his bedroom, while all we have is the bed, two bedside cabinets and a small bookcase, and all we do in ours is sleep, so it makes sense for him to have the larger room. It's a bit of a logistical nightmare, as I'll need to paint his purple wall pale blue and the feature wall teal, and paint our teal wall pale blue, and swap over the curtains and pelmets and make long curtains to cover the 'wardrobe' spaces on either side of the chimney breast. One of those will be Kai's wardrobe and the other one will house all his (five) guitars (YAY! They'll be tucked out of the way and gathering less dust at last...) In the meantime, in order to fit our clothes into Kai's fitted wardrobe I've had to reduce my clothing by half (several large bags went to charity, all stuff that I've gone off, will never wear again, or is too big): Ken still has to do his. That'll be fun. Not. (The overflow will go into the large cupboard in Ken's office - mainly coats and jackets.)
But the end result will be worth it. And we know we're fine with the smaller room: it was our bedroom for a couple of years when we first bought the house.
Monday, August 18, 2014
Just platelets today - RBC was at 92 (actually quite high) and neutrophils at .50. And my BP was 139/92 - not too bad at all. There'll be a letter confirming the schedule, but we've been told Kai will be admitted to the ward on the 26th ready for the final 'conditioning' - basically the radiotherapy to kill off the rest of his immune system. Which is an absolutely terrifying thing to type...
Friday, August 15, 2014
Work-ups went OK. Of course, I was so stressed and worried that they'd say my BP was too high that it was through the roof when they took it. Just as well I had Dr Reading's letter with me. After some deliberation the transplant team have OKed me to donate, with an average BP of 146/90 (rather better than the 197/120 that I started off with in May. I can also confirm I have lost two stone in that time...)
So - barring catastrophes - we're all set.
Wednesday, August 13, 2014
Well, we're back home, and Kai's had his echocardiogram. Tomorrow is the respiratory tests and TBI (total body irradiation) meeting: since he had a chest x-ray when he went in last Sunday looks like he doesn't need another. He'll be admitted to the ward five days (I think) before the transplant for his 'conditioning', which includes the radiotherapy. I get my full work up tomorrow, and I now have my schedule: four days of injections of granulocyte colony stimulating factor (G-CSF), and since this is from Thursday to Sunday (28th to 31st Aug) I think I'll just go into the BRI. I'll be able to ask any questions I've thought of in the meantime then. Then 8.30 am Monday 1st and Tuesday 2nd September it's the related donor peripheral blood stem cell collection (PBSC - my bit) and, I believe, as soon as that's done and prepared, they give Kai the transplant (either on the 2nd or the 3rd - it has to be done quickly I believe). For him, it'll be like a normal platelet transfusion.
And then we wait.
And cross fingers, fast, will, pray, sell soul to the devil, "... make a deal with god, and get him to swap our places...", whatever works...
It'll be a minimum of a week before we know anything, and more than likely a lot longer.
I think Kai is relieved it's finally going to happen, and seems optimistic (at any rate, he was wondering whether it would be OK for him to go to conventions and concerts 'once I'm sorted'. We'll get advice about that but I can't see any reason why not).
Oh, yes... although my blood pressure still isn't quite as low as the transfusion team want, Dr Reading has decided it's now at a level that's normal for me (when stressed! 148/96 this morning) and is perfectly OK with me donating. She pointed out it does vary, and did reach very close to the 140/80 they requested a couple of months ago. She's given me all the readings she's taken (and is extremely pleased I've done so well - so am I, and two stone gone now) to give to the transplant team tomorrow. If the Day Unit can wait an hour or so to take my BP it'll be lower, as it's less stressful away from home at the moment. We'll see, but we're kind of committed now...
Tuesday, August 12, 2014
Things are stable. I'm not going to say anything more in case I jinx it...
He finished the anti-bios and his temperature was down to normal, but they decided to keep him in overnight to be on the safe side.
And now he has a temperature again.
They've had to remove the cannula in his hand (we think the needle was too big, it was unbearable) and put a new one in the opposite elbow, and are giving IV paracetamol to tackle the temperature. He's really not having a good day.
Quickie before I make fajitas and head in...
They took the PICC out yesterday - a very quick and completely painless affair. Now they have to schedule putting in another, either on the other arm or a central line. (I'm hoping not a central line: they scare me.) In the meantime he has a cannula in his left wrist (where they found the best vein to use temporarily) which makes it difficult for him to use that hand...
If everything goes well and they're happy, there were mutterings about discharging him today. However, we have to go back in tomorrow. Remember all those checks we both had to go through a month or so ago? We have to go through it all again to make sure the info is completely up to date. It's Kai's respiratory test tomorrow. On Thursday, along with the normal appointment, he has his ecg and chest x-ray, while I get my ecg, full bloods, weight and BP done. Not sure if I have to have another x-ray or not. They've also booked Kai in for another complete dental check up: going to ask if that's really necessary as nothing has changed there. It probably will be though...
Monday, August 11, 2014
Kai woke up yesterday feeling worse than normal: watched a couple of films and we kept an eye on his temperature. Come 4 pm it was 38.4°: I rang the hospital and they said to get him in. So he's back in Area 61 under observation and being pumped full of anti-bios again.
At least his room has a wonderful, huge window with a splendid view of the sky...
Saturday, August 09, 2014
Pretty sunset last night...
Thursday, August 07, 2014
Quick appointment as Kai had blood at the weekend and platelets on Tuesday. We saw Prof Marks, who says my apheresis is to go ahead on the 1st and 2nd of September, so I guess Kai's transplant will be on the 2nd. The blunt facts are haploid-identical transplants have a 50 - 80% success rate: they've put Kai's chances at 65%. There are a lot of things that can go wrong, at least one of which can be fatal, but the Prof is cautiously optimistic, as Kai is young and fit apart from the AA. If it doesn't work and nothing else goes wrong, he should be in the same state as now. I did ask what would happen then but he said to take it one step at a time...
I'm not going to talk about this again until after the event.
Tuesday, August 05, 2014
Kai's home - was discharged 9.15 pm after platelets. He's looking and feeling much better, and has 5 days' worth of other anti-bios to take before going back to a (reduced) dose of ciprofloxacin.
Tyjer couldn't get enough of pettins from him! Cat missed him as much as we did I think (and not because of bed, he's not allowed in Kai's room!)
More tomorrow - I'm knackered.
Monday, August 04, 2014
Quickie because it's been a couple of days. Kai is slowly improving, his 'infection markers' are considerably reduced, and there's mutters about selecting a day he can come home, which is very reassuring. No news yet as to whether they need to remove the PICC, but I'm hoping that means they're happy to leave it in.
More as it happens. Sue, will get back to you when I can but probably not for a few days - I'm knackered again and have got to try to get more sleep.
Saturday, August 02, 2014
Back from the hospital. His temp is still at 37 - not gone up so that's good - and while I was there the doctor arrived with the culture results. It's a staphylococcal infection, which possibly entered via his PICC (apparently it particularly likes plastic). He's on additional anti-bios, but there's still a risk the PICC may have to be removed, which is going to increase the risk of infection every time he has a canula instead - plus it's painful. Keeping fingers crossed the new anti-bio knocks it on the head and he can keep the line...
One of the nurses on Area 61 is a young lass called Kai (though maybe not spelt that way) and another is called Kaiya. They were joking he wouldn't forget their names.
I also keep forgetting to say: the lumens on the end of the PICC line are red and purple, Autobot and Decepticon colours respectively!
Friday, August 01, 2014
Nurse took his temperature while I was there, and it had come down to 37, which is definitely heading in the right direction. He was feeling a bit better too (though only a bit), but very dozy: he'd been given anti-sickness meds that worked but made him sleep. In fact, he slept most of the two and a half hours I sat with him, but he had perked up a little by the time I had to leave - even managed a small smile. We're not there yet, though, so please keep fingers crossed and 'fluences flowing.
Kai was on skype this morning. His temperature was at 39.9 last night, but had come down to fluctuating between 38.2 and 39. He was still on intravenous paracetamol and anti-biotics, but warned me he was probably not going to be on skype much. I've done all today's jobs and even managed a small bowl of salad, and will be heading in very shortly. More when I get back, hopefully.
Thursday, July 31, 2014
Kai's blood review was surprising this morning, platelets at 10 and RBC at 92 - surprising but good. Dr decided he didn't need anything (which was just as well as yet again the platelets weren't ready, lab said they didn't get the order which made the dr very angry as he'd ordered them Tuesday and then rang yesterday to check they'd be ready...) so we went home early.
Mid afternoon Kai says he was freezing and felt like he had a cold. His temp was 38, so we waited half an hour, by which time it was 38.4, and I rang for a taxi to rush him in. Got there about 4.30, they decided to keep him in. They got him a bed down on Area 61 (the Young Person's oncology ward) and started him on intravenous antibiotics. I came home, grabbed his bag, clothes, wash stuff and meds and went back: arrived 8.30, by which time he was in his room (very nice too, desk with wifi of course, a chaise longue style window-seat that can double as a bed for a family member to stay overnight, TV with dvd player, room itself cool, calm and quiet with a spacious en suite) and still feeling rough after the first anti-bios dose. I left at 9.15 to get the 9.30 bus, got in at 9.56, booted up to check in with him on skype, only to find he was offline. Thought he may have closed down for the second round of anti-bios, so went for a shower. He was still offline when I got back, so I tried ringing his mobile. It was off. So I rang the number for Ward 61, only to be told (after ten minutes of confab I could just about hear in the background) that he was over on the young person side and I had to ring a different number.
Rang the number, apologised for bothering them, and explained I couldn't get hold of Kai and was he OK?
He's in bed with a raging temperature being drip fed paracetamol, replied the young nurse brightly.
Jesus fucking Christ!! What sort of nurse says that to a worried mother??
I can't go back in, I'm exhausted. I'm averaging four hours sleep a night at the moment, and I have an appointment with the nurse up at the surgery in the morning for a blood test to check my kidney function (on the new meds). Afterwards Kim's picking me up to get out to Almondsbury to get crickets and rats for Rosa and Feather, and I can't put that off as we're out of both and I can't let them starve, regardless of what else is happening. I shall get in to the BHOC as soon as I can afterwards, but the planned meeting with Ken and his workmates after work for a drink is completely out the window.
... can we rewind a couple of years and have everything work out properly, please?
Labels: medical matters
Monday, July 28, 2014
So - finally managed to get to see Transformers: Age of Extinction and actually rather enjoyed it. It still had far too many explosions and car chases and horrible Bay trademarks, and I could definitely have lived with the bots being less 'human' in attitude (and what the hell? That was Kup, not Hound!!), but the plot was decent, and the film was internally consistent and logical, and followed on well from the abomination that was Dark of the Moon. I think we can probably blame Steven Spielberg for the improvement! The ending sets everything up well for the sequel too. It's definite 'buy as soon as you can rather than wait for the price to fall' fare. I need to see it again, to pick up on the bits I missed the first time.
And our little darlings have been digging in the garden again - in the strawberry bed this time.
We've been having intermittent connectivity problems here - there may be an engineer coming to look at things tomorrow. Or not if they find the problem is at their end. But we were off for an hour earlier, so not sure... Wish us luck.
Friday, July 25, 2014
... heh... assuming having an extra day would mean more time to update the blog was obviously a tad over-optimistic...
What have I been up to? A lot of weeding, hoeing and shopping, of course. Kai's computer components have been arriving bit by bit, and he's had an interesting time building the new machine - tentatively named FenFen. His right-angled cables arrived this morning, so he's now pretty much ready to install the new power unit (he was going to use the one from the old machine, but he's not sure if that was what was causing the problem, so we've bought a new one), move his old hard drive over in the hope that it survived the crash (it has all his fox videos on it), boot it up, and install the OS (Windows 8). I think I'd rather be elsewhere for that so may take myself off to Wells tomorrow, see if I can get some more plants...
The first three Rescue Bots dvds were on special offer on amazon us, so I ordered them for Yule for me, but Ken said we had to check they were all OK so we've been watching them. They're as much fun as I remember, and full of subtle homages to other shows (and although I can't confirm it I suspect that the attack of the lawnmowers in The Return of the Dinobot is a nod to the 'attack of the zombie lawnmowers' in Starscream's horrorscope in the old comics.)
Other than that? There's not so much to do in the garden this year since our neighbour spray-painted his fence - and my greenhouse, the patio doors and all my veg seedlings, and yes it was deliberate, but more on that after I've got legal advice. I'm now having to buy the veg that I would normally be picking from the garden, and I also won't be able to fill my freezer with veg for the winter. I have managed to get my sweetcorn in, and a few mange tout and dwarf beans, but that's it. At least none got into the greenhouse, so my tomatoes and peppers were safe.
Blood pressure was 136 (which is brilliant) over 92 (which isn't so good) at my appointment on Wednesday, so dr has prescribed me Tensaid to supplement the Ramipril. It's a diuretic - oh joy, like I don't need the loo enough as it is! - but the accompanying leaflet says it doesn't produce too much extra urine. Heh. We'll see...
Kai's Thursday appt was a bit of a washout: the lab had got it wrong and ordered his platelets for today (Friday) instead... But they took blood for the cross match, so I'm hoping today will be shorter than usual. There's twenty minutes left on the platelets, then at least one unit of blood over an hour and a half (it's 12.20 here).
But we're actually all too tired for a film, so just going to chill tonight and get client stuff done tomorrow. And next!Poppy (page and a half written today...)
Sunday, July 20, 2014
The Poppy Tales, New World 2, ch 19 - Reconnecting - now posted: link above.