After good omens

Good omens is the post I started writing about the blood-taking and I few things I noticed around it. It might get published some time, but for now --

We got Arthur's test results back over the phone at the end of last week. ALT and AST half their previous values (this is good). Platelets and clotting holding steady. Function (eg albumin, protein synthesis) normal. Bilirubin at 28, so steady on last June's value of 25 but a higher level of steady that prior to that.

There is not much to say about today. A hospital quiet in hot sunshine, a long wait, two tired looking Doctors with an inaccessible computer system (so no copies of results apart from ours, scribbled on the back on an envelope along with phone numbers and play centre opening times).

The itching was noted and discussed a bit, they decided not to treat it unless it worsens significantly (= disturbing sleep, damaging skin, upsetting him socially). We are in full agreement with this. Physical exam similar to before: spleen palpable to 5cm, liver's left lobe larger than the right, all unpleasantly hard to the touch. Palmar erythema (and you should see his feet, veins like mangrove roots branching down to his soles, but at least the haemorrhoid has receeded).

Hospital cafe lunch on the top floor, ride the lifts and the escalators, and escape back to the normal world, back to making a point of not watching him too closely while watching, at some level, constantly. This evening at bedtime I asked if he preferred it if Sylvan came to the hospital with us, and he looked relieved and agreed, so next time little brother can come, too, like he did for the bloods.

Not good omens, not bad omens, just the tick tock of time and the faintly alarming frequency with which appointments roll around - he is already nearly half way to his next endoscopy.

Tomorrow

Bloods tomorrow, both boys in tow as Mike is in Wales working on his father Stan's yacht, which he promised Stan he would help to maintain.

I am quietly confident that all will go well as I have made it very clear that good behaviour* at the hospital = candy floss at the fair. Also, from tonight, no bottle of milk in the night (I know, I know! They're far too old, but I had a dummy until I was 8 so am overly empathetic on the subject. Anyway, it helps keep them hydrated, doesn't it?) = 1 fairground ride. As there are 3 nights between here and the fair on Saturday this should be enough to a) wean them and b) bankrupt me.

* Good behaviour does not mean not crying. If he wants to cry he then he can cry, and I will comfort him. Good behaviour applies to the rest of the trip, par example not running off and getting their little feet trapped in the lift door whilst simultaneously howling for jelly beans and announcing that I am no longer their friend, or similar.

More staff, please

The NHS does not need managers. It needs more medical staff (from lab techs up to consultants), secretaries and support workers. For the cost of one manager often several of the former can be employed, and there's no point having a manager to tell people what to do if their workload is simply unmanagable - all the managers in the world couldn't fix that. Aargh!

Next outpatient appointment on the 20th April, bloods required pre-this so that they can be discussed during said appointment. So, I spent 20 minutes on hold* to the appointments dept, who gave me a number for phlebotomy. Called phlebotomy multiple times, phone never answered. Instead tried main switchboard who put me through to children's outpatients, which rang out then disconnected twice. Tried again later, and managed to make an appointment over the background sound of distraught screaming. Return from work the following day to message that appointment cancelled due to staff shortages that day. Call back on number given to change appointment but it's eternally engaged. Weekend arrives and so abandon all hope until Monday. All this, just for routine bloods.

* at 4p/min. Can I offset this against tax? do they claim gift aid?

What do you want to be when you grow up?

"I want to be a woman!" says Sylvan. We'll see, son.

Arthur wants to be a doctor, and help people get better. Which people? Little children, he says. We will get him a doctor's kit for his 5th birthday, as he's been yearning after one for ages. When they had one out at school he would stay inside to play with it. Who with? I asked -- Nobody. Or whoever wants to play with it. His friend's mum is a paediatric consultant with a spare at-home stethoscope who drives a black Audi; Arthur is in eternal awe. I am in eternal awe because she does palliative care, and just typing that makes me cry.

In the meantime, Arthur would like to go to Boy Classes. Boy Classes? Boy Classes! Where you spin around really quickly and do pirouettes. And Anna B goes there. Ah - ballet classes. So I take a deep breath and explain that he might have to wear pink and there might not be any other boys, but he is undeterred - his pirouettes are so good that the teacher might say he is the winner! Ballet isn't about winning, I explain, it's about trying hard and doing well. Shrugs Arthur acceptingly: the teacher might say he has done very well! Will I get to dance like this? he asks, and tippy toes across our oversized bed, big enough to sleep up to four of a night.

Heavens. We'll go for a look and see if he liks it on Saturday. I had been thinking more along the lines of Capoeira, and his schoolmates do kickboxing and boxing and swimming, but...

Miscellany

It was a no on the dog-love front. Oh well - we'll try her again and differently in August, and perhaps end up with a Christmas full of puppies. The quest for pups has had another rather different outcome, too. One of the mothers familiar to me from the school commented some time ago on how her family all loved Maisie (who is sometimes tied up outside if we are on our way elsewhere), and expressed interest in a puppy. A few days later I heard her talking in the reception to another mother, about one of her children. I wasn't intentionally listening in but certain words and phrases penetrated through the story I was reading to Sylvan: inpatient, IV-antibiotics, upper right quadrant pain, King's College Hospital... I asked her about it at a later date and it turns out it was indeed a cholangitis scare. Not BA, but another condition requiring a similar surgery, and performed by the same surgeon as Arthur's kasai. We have yet to discuss it further but I am sure we will. Have yet to tell her no puppy though :-(

Arthur's happy at school still, which is good. He divulges so little of what goes on to me that it is hard to confidently write an update that sounds like I actually know what the hell goes on there. However, he did recently recount a story that they read, reassuring me that environmental extremism is alive and kicking in the national curriculum:

It was a story about a rainforest, and a man came with machines to cut down all the trees! And all the animals might have died, but then it rained a lot and the rain washed away the man in his tractor. The animals were alright because they walked away from the rain and the man in the tractor couldn't cut down the trees anymore. I think he's dead.

Sylvan has been offered a morning place starting in September, too. When this begins I will be boy-less for 2.5hrs a day - what on earth shall I do with myself? (if you've seen our house you will know the answer!)

Last weekend we went and stayed with our friends Nick and Linzi in Reigate. Reigate, little boys' heaven - the North Downs with their steep slopes and rabbit holes, far reaching views over grand houses and horses in the warm warm sunshine, more aeroplanes than you can shake a stick at thanks to the proximity of Gatwick. And if that wasn't enough a level crossing in the middle of town right by the station and with cars and trucks and a squad of motorbikes and not one train but two and a footbridge to view it all from while drinking strawberry milkshake. Arthur has already expressed an interest in moving there but it's just a touch over budget at present. Thank you for a lovely weekend :-)

Arthur's next outpatient appointment has been moved back to the 20th April, so we will take him for bloods in a few weeks' time. He is definitely more itchy, and although it seems to be mild it is bothering him a bit. When I asked what it felt like he said "like hundreds of little mosquitoes all over my body", and not long ago he broke down and wept, howled that he didn't want to be itchy in school in case the other children called him Mr Itchy. Do they call you Mr Itchy now? No, no, but they might, they might see and they might think of it (at which point I nearly howled, too). He's brought this up again since, but not with the same degree of anxiety.

Phew, that's enough for tonight. I'll finish with a few photos and the excellent news that dearest Hannah, Arthur's godmother, is coming to visit us at the end of this month - can't wait!

The dog won't Do It

Little Maisie is now three years old, and after much consideration we have decided to let her have a litter of puppies. I'm in two minds about this dog breeding business - enough dogs out there already needing homes, and probably enough dogs in the world already full stop. A bit like children, how many dogs should one have? Of course there is no easy answer to this. However, I'm not having any more kids (for now?) but really quite fancy babies around again, so puppies seem like a good option. ('And anyway!' screams my self-justifying inner voice, 'And anyway! you don't fly! you compost your waste! and have an allotment! and transport your kids by trike when the weather's okay!' etc., all of which is all well and good but has little to do with dogs and so is rather beside the point. I've recently noticed my inner voice is very keen on exclamation marks, whereas my rational self dislikes them).

Letting Maisie have a litter of puppies is not as straightforward as it sounds. For starters, dog-seasons are complicated things with a fairly precise but unpredictable window of opportunity. For seconds, she didn't much fancy the man that I chose for her - put her tail between her legs, sat on my foot and told him in no uncertain terms where he could go. After three introductions we gave up, and it soon became clear that she thought his father a far better catch as they played happily in the garden together. Still no, y'know, though. Pip, that's his name, is coming over to our house for a change this afternoon in the hope that she'll feel more, um, obliging in familiar surroundings. So please cross your fingers (or perhaps uncross?) that things go according to plan, 'cause I reckon she'd be a fantastic mummy, and anyway, I want puppies!

Welcome to 2009

I've been taking a break from blogging. Dear reader, it may have been just as long as I usually leave between posts, but it was in fact a proper break. This was partially prompted by Arthur's last clinic letter, which stated in no uncertain terms that "Arthur is doing very well, but his mother needs to control her vaguely obsessive paranoia and worry". Of course it was put much more nicely than that, but I heard what the Dr. was saying. Hang on... I've just dug it out and read it again. Perhaps they weren't saying that. Either way I knew it was time to have a rest from all things liver, and anyway there was Christmas and all that shebang on the way to worry about instead.

Arthur's doing well. He had the option of starting full time at school from January but Mike and I decided against this. He found just a morning session pretty tiring anyway, and he's going to spend years and years in school - no need to extend it unnecessarily. Also, I wanted to still have the time to do stuff together - walks, swimming, baking, outings - that just can't be shoehorned in between the end of school at 3.15 and dinner on the table for half five. Instead he stays for lunch, until 12.45, which suits us all well. The whole school upset business settled down with no further trouble, and he has fallen in love with a dear little boy in his class. When he returned from the Christmas holidays he went straight to sit next to him and squished up as close as he could, holding hands.

Healthwise, generally, he's great, but on the smaller scale I am not so sure. He often complains of being tired and I have noticed him itching here and there, though not badly. In some places and lights his skin has a slightly yellow pallor and his eye whites are sometimes grubby looking, but when I look at and assess him every day it's hard to discern what it is I'm actually seeing. As ever only time and bloods will tell; his next appointment is in April.

Sylvan... Sylvan. Feisty little thing that he is, determined to do everything his brother can do without assistance, and also the things his brother can't. We put him in to nursery two mornings a week and he hated it. I had thought he'd love it - so strong and outgoing, and it was based in the same building as Arthur goes to school in so very familiar - but he didn't. He cried and stopped speaking, latched desperately on to one member of staff (a beautiful vivacious young Polish woman, he has good taste) and would become rigid with stress when we talked at home about him going there. We battered on through 4 or 5 weeks then took him out, it was too much like seeing a bright bold little daisy being flattened by the big muck coated wheel of an ox cart. He is fine, of course, but still occasionally wary of playgroups, and fond of checking that he is not going to return to that place.


Other news of note: we got 5 new chickens. The boys adore them and they are called Mike, Elly, Arthur, Sylvan, Benny and Jack (yes, I know, I can count too. And no I don't know which is which, apart from Arthur, who's quite blond). Arthur boy will spend up to and hour in their run, stroking them and picking them up, digging for worms, checking for eggs and imploring them to lay more.



I'll be interested to see what the coming year brings. Mike and I have been talking about some fairly big changes to our set-up but have yet to come to any conclusions. In the very short term it is my birthday next weekend (in to my latest of late twenties, 29) and was Mike's last weekend, and to celebrate we're having a night in a swanky country hotel in the New Forest. This is the first night we'll spend alone together since Arthur was born, and only the second night I'll ever have spent away from both the boys. I'm really really looking forward to it :-)

To finish - some good news. A little girl we know called Bethany received a donated liver yesterday and had a transplant that should save her life. Please join me in wishing Bethany a swift, uncomplicated recovery from the surgery and in thinking of the family who made the decision to say yes to organ donation. Love all round xxx