Low level ecstacy

I think we've all had enough of Quent's tongue.

We have been home nearly two weeks now and we're slowly getting back to some sense of normality. A sleepy sense of normality. We go to bed early and get up as late as a three year old allows (including sneaking back to bed when he's at nursery). Quent generally has an additional three to four hours' sleep during the day. And I feel I could, given half the chance.

This weekend was the middle weekend of the two week Scout camp - a highlight of Quent's diary. Every eighteen months, the (Sea) Scout Group is inspected by the Royal Navy and it's quite a big thing. This Saturday was the inspection and Quent was very keen to be there. Camping wasn't really an option and all local B&Bs were full, so a friend of ours came to the rescue and we stayed with her parents, on the other side of Poole Harbour. We arrived Friday and left Sunday and were able to go back to our room for afternoon sleeps.

The Scouts gave us all a wonderful welcome. Quent was delighted to be around for the inspection (which they passed with flying colours, of course), Oakley was in his element with so many friends to play with and I enjoyed doing very little. The Commanding Officer was treated to displays on numerous dinghies, catamarans, rescue boats and kayaks (re-enacting the Lime Bay disaster and how to get out of the situation unscathed). They even took a yacht down there and the Cubs visited for the weekend to built a raft. The final display was a climbing and abseiling exercise from a huge tower, constructed from telegraph poles and home-made rope ladders.

(Erecting the main tower and swinging on the Oakley version)

In "A Walk in the Woods, Bill Bryson uses the term "low level ecstacy". I think it used to be called simple pleasures. For Bryson, (following the Appalachian Trail) it was taking a shower after days without - or eating something other than noodles. For Quent, (following Christie's) it's dinner in the garden, playing lego with Oakley - or sneaking off with a few Scouts and a chain saw to chop logs for the campfire.

Holiday snaps

We thought we'd share with you some of the pics from our Manchester minibreaks:

Anyone for a snog? My wife's stopped kissing me.


My neck is peeling...
...in fact, all of me is peeling - even my eyelids
Not a good moment. Oxygen reservoir and ECG wires.
Much more fun. With my IL-2 friend, Philip and the Prof

I am blurred and the equipment is in focus. It's called a rigor.

The latter is better illustrated on a video clip. See http://www.youtube.com/watch?v=SsWrJnYeYH0

Back home and things are continuing to heel nicely (groan!).

I hope that lot hasn't put you off your lunch. One of the Doctors is going to use some of the above in a presentation, so I thought I might as well share it with all of you as well.

Sleeping and snowing

We've been home several days now and sleep is definitely the order of the day. Quent sleeps for very large chunks of the morning, afternoon, evening and night and I join him whenever I can.

When Quent is awake, he walks around the house, snowing gently. A thin layer of dead skin covers almost every surface. It's quite amazing (would it be disloyal to say disgusting?). Quent is scrubbing as much as possible off in the bath and we continue to slap on the acqueous cream, but all to no avail. Three minutes later and the body dandruff starts again.

If beauty is only skin deep, Quent's got a problem!

Home sweet home

We're home! What a great feeling.

We said goodbye to everyone at Nathan House just after midday. They have given us the very best care possible - from the amazing medical treatment through to the kindness and company. What a great team. They have had a tough week with several IL-2 patients in (never their favourite) and the sad death of Tony Wilson on the ward, on Friday. But they remained professional, caring and cheerful throughout.

We'll be back mid October, which gives us two months to fill with rest and recuperation (ie. sleep and treats).

Thanks for all your support over the last three weeks.

And so, to bed.

Texts from the babysitters

From Vanessa and Jim yesterday :

Oh my god! o and m are now giggling and licking tongues. officially their first proper snog!

From my mother this morning:

r and o have gone visiting to the 2 little girls up the lane. o was not wanting to see the cows first just the girls. he gets more like q by the minute

;o)

To sleep, perchance to dream

We both slept well last night. I had vivid dreams - is there such a thing as passive pethidine? I was in a motorbike rally and everyone was getting cross I was so slow. Frankly, I have enough on my plate without joining the Hell's Angels. Quent had had four doses of pethidine, so goodness knows how exotic his dreams were. By morning he was together enough to explain to me about the throttle.

The lower dose had no effect on the rigours. Quent had three doses of pethidine straight away and the fourth an hour later when he had a second bout of the wriggles. However, we were spared the nerve racking SATS drama of the previous few doses, which was great news. This morning he has had dose 8 and needed four lots of pethidine all at once to calm it. That's the maximum they can give so I hope he doesn't get second wind. We are waiting to see if his SATS fall.

Quent wanted you all to know how swollen he is. I told you he had put on 10 kg - this results in his hands looking like blown up Marigold gloves. Should there be a Misery II, he may beat Kathy Bates for the starring role. His skin is also very very dry and flaky and we regularly do an all over acqueous cream rub. It's not as sensual as it sounds. I am not great at judging amounts and he usually ends up looking as if he is about to swim the Channel.

Sylv is right that I thought this would be the last dose. It still will be if he fails the weigh in. If this were the Grand National of hospital checks, I guess he would go on the scales with his blood pressure cuff, oxygen mask and sick bowl. I might suggest it to the nurses because with that lot he'd definitely be barred from more doses. If he passes the weigh in, the Prof is keen to go again this evening. It seems there's a 3 for 2 offer on reduced doses.

Whatever happens, at midnight tonight, it's "Drips down, stop treating, please". We can't wait.

Oh, what a night.

Quent had dose 6 at 7.40pm and rigoured two hours later, as usual. Even allowing for the now routine SATS drop, around 4 hours after the interleukin 2 goes in, all was looking good for a reasonable night's sleep - and a "lie in" thanks to the new 12 hourly doses.

The SATS drop was not exactly routine, however. It started at 11.30pm. Exhausted, I did eventually get some sleep at 3.30pm. By that time the room was so full of doctors and equipment, my bed wouldn't fit, so they gave me a side room down the corridor. Not that I slept well, of course, as my mind was still with Quent... (although they were by then declaring him "comfortable").

To cut a long story short, Quent's SATS and blood pressure seemed to be quite low for a long time. The problem is this (in broad layman's - and undoubtedly medically inaccurate -terms ). When your SATS drop, your body focuses on the key organs and "shuts down" other bits - such as the extremities to which the probes are attached. This makes it hard to get reliable readings. In the end, they got round this by doing "blood gases", taken directly from an artery. It's a nasty procedure and one you can't be doing all the time. The results revealed Quent's SATS to be low (90%) but not as bad as some of the measurements had indicated.

By then the Registrar had been called in and the Critical Care anaesthetist had come up. Both felt that the alarming readings could not be reliable or Quent would be looking much worse / bluer. (They would not be compatible with life, was how Frances, my sister-doctor, put it this morning). The doctors manually checked his chest, heartrate, breathing etc. and seemed happy to leave him where he was. If anyone is looking for a business idea, I reckon there's a market for a reliable probe - you could sell it to the fretting relatives, even if the hospitals don't go for it.

Another way to check how the patient is? Ask the patient. Unfortunately, in Quent's case, this is even less reliable than the probe. Quent always says "great", "fine" or, in extreme cases "a bit tired". This morning he could remember very little of last night's episodes and visitors and admits he was away with the fairies.

So where do we stand now?

Quent is due to have another dose around 2pm, although it will be a lower dose on the advice of Prof NOS. (Quent's response, "low doses are for pussies" was thankfully rejected). Some results to do with his kidneys are quite high and there's something not quite right with his bloods. He couldn't pass urine for about 18 hours, although he then delivered a magnificent 820 ml (too much detail, I know, but we're amongst friends). He looks exhausted, old and very swollen - he has put on 10kg since Thursday afternoon - but so, so much better than in the middle of the night. It's amazing how quickly things change, yet how long it seems to last when they're bad.

Quent will probably only get, at most, 2 more doses due to the weight gain. They only let you put on 15% of your body mass (in 5 days) and Quent only has 2 kg more of his allowance to go. He has done extremely well, so I can't say I am disappointed. Our friend Philip-the-success-story, who is with us again, had 10 doses on his first visit and 6 on his second. He's cured and, although you can't draw conclusions on dose vs response, it's still a reassuring benchmark.

Send three 'n fourpence

(This was written yesterday evening, but there was no internet access, so I couldn't post it)

I was pleased to see that while I had been lining up my reinforcements, the nurses had been doing the same, in the form of Kirsty, the nurse from Critical Care Outreach. She was present when Quent's SATS and blood pressure fell again and it was great to have her and Lorna around. I don't think Lorna felt I had been crying wolf.

Kirsty said they'd have to discuss with the Prof whether to start the next doses on the Critical Care Unit. Predictably, Prof NOS (Nerves of Steel) dismissed this idea as totally unnecessary, but even he was concerned enough to change Quent's doses from every 8 hours (min) to every 12 hours (min).

We'll not be going to the dance, but instead will be taking a very amusing Walk in the Woods with Bill Bryson - via an audio book.

It's a knockout.

I had been playing my joker on the sleeping game. Dose 4 finally went in at 10.30pm, with rigours at 00.20. By 1am, the pethidine had kicked in and I reckoned on five hours' fairly uninterrupted sleep before they even threatened the next lot.

Quent had other ideas. Around 3am his SATS (oxygen levels) dropped and his temperature soared. He recovered reasonably well (albeit on maximum oxygen for the rest of the night). By 4am I should have been able to sleep again, if only I had been able to drop off. Every time the machine beeped, I lept up to read it.

I couldn't believe it when, at 6.30am, they did his observations and seemed set to go. They check oxygen levels, pulse, blood pressure, urine and temperature. Usually he fails on at least one and we have to wait a while. This time he failed (by a mile) on bravery of wife, but sadly that's not on the list. Quent was keen to go again, in spite of feeling dizzy and "beaten up", with pains in his left arm. (The blood pressure cuff had been on that arm all night and it's also the one the drip goes into.) They gave him (me!) a bit of grace and dose 5 went in at 7.25am.

Lorna and Phil had planned to come today so I rang and asked them to rush over to hold my hand in time for the rigours. Phil has other commitments this morning, but Lorna has lept in the car and is on her way over. I hope my nerves are unfounded and that, later on, she's cursing me for panicking.

Ding Ding. Round two.

Joanna arrived at 6.50am to babysit Oakley before breakfast. For a lady with no kids, this was quite some favour. And, sadly, it turned out to have been totally unnecessary as we sat around for hours when we got here before anything happened. They had a very busy day with other patients having crises, so we sat and waited - and watched Ocean's 12 on DVD.

I like to think I might have lost a pound or two due to extreme nerves. When we arrived, they told us we were in the room right by the nurses' desk so they could keep an eye on Quent - "because he was so ill last time". I made the mistake of asking what the concern had been over dose 10 and they replied "cardiac arrest". To reassure me, they told us that the Critical Care unit knows Quent is coming back and that he's not just an IL-2 patient, he's Quentin Webb IL-2 patient, with everyone alerted. He's getting himself a reputation.

I feel calmer now because:

1. I have persuaded myself that if his SATS (oxygen saturation) fell to 40% and he didn't have a heart attack, that shows his heart must be very strong. This might be rubbish, but I have learned my lesson not to ask for the real reasons and to stick instead to my own cosier version of the facts.

2. Prof Hawkins seemed very unconcerned. He said the SATS aren't always accurate when the patients are rigouring because of the jiggling about. Apparently it's the measurement he is least concerned about. He also politely suggested I went home just after I showed my nervy wife side, so I think I'd better keep my mouth shut.

3. Quent has now had two doses and they went pretty well. He rigoured a full four hours after the first - and not strongly, even then. It's six hours since the second dose and no signs of rigours yet (My sister, Frances, is by his bedside while I update you in case he's just very late). He has been pretty sick and is on constant oxygen as the nurses don't seem to share entirely the Prof's phlegmatic nature.

Please keep the prayers and positive thoughts coming. They really do help us all - as do your blog comments, texts and emails.

Oakley

So, what has Oakley been up to over the last 10 days? We dropped him off in Guildford, home of the gorgeous Martha and brother Jack. Highlights included a midnight feast, going to school with Martha, a day out to a fun farm and "Vanessa" (M&J's mother) who was, according to Oakley, the best thing about the trip.

Then it was back to Chiswick for a weekend of lego, river walks, playgrounds and ice creams with Helen Randle, before going to Granny's to meet up with Lorna, Quent's sister. Lorna's grand-children are not much younger than Oakley. Rory, Ewan and he (photo attached) had three days of fun and treats, including going to soft play and a park with rides and animals - including two tigers. By now Oakley's ice-cream capacity was up to 1.5 Magnums (magna?) at one sitting!




Apparently he was very well behaved throughout and everyone has enthusiastically offered to have him again.

He was pleased to see us and has been sunny and funny ever since. He's been very affectionate but not clingy and hasn't played up as I thought he might. When I told him I had missed him masses, he told me he'd missed me too, but "only a tiny bit". He then named the exact minute he'd missed me, to prove his point.

He's also taken the opportunity to change the house rules a little. Apparently Oakley's house is very big and there's always a party, with room for everyone in the whole world. You never have to say please and there are no phones. Since our trip to Tesco's, it also has a different type of rice crispies which, I am told, "they have in Guildford".

Next week, he's going for a sleepover with James Wiley (one of his best friends from nursery), then back, by popular demand, to Jack and Martha's for the weekend. And finally, Nana and Grandad will come and look after him until we return. I explained all this to Oakley today and each part was met with a big grin and approving squeal of excitement.

Home sweet home

We escaped on Wednesday morning and arrived home late evening, having stopped for lunch and sleeps at Quent's sister, Lorna's house. Quent still felt pretty ropey Thursday and yesterday - and so did I. We spent as much time asleep as possible and in between times I tried to give Oakley the attention he deserved. Hence no blogging and few phone calls.

This morning Quent is looking much better and has been up and about with Oakley, having breakfast. He is now back in bed, but talking about going to Maplin later (no way!) so he must be on the road to recovery.

Joanna has just called to say that the blog silence had her worried. Apologies for the lack of communication. With one charge dropping from a team of nurses to a tired, old wife and the other charge demanding quite a bit of attention, it's been a bit of a juggling act. And juggling is not easy when all you want to do is sleep.