Wednesday, 31 March 2010

The bells, the bells

You know you're tired when you drive past one of these sets of zig zagsand you find yourself thinking "Oh, that's a good trace"
and then you realise the noise isn't an alarm; it's your engine, and you remember you are driving.

So then, you get a new monitor, a new flashy fancy monitor with a clever little setting which means it doesn't alarm every time SATs drop, only when they either drop dramatically, or they dip but stay dipped. It's very very cool. And it didn't alarm for four whole hours last night. Which meant I had to get up at 1AM just to check it hadn't been switched off.

Unfortunately it then went off at approximately hourly intervals throughout the rest of the night, until it got so that every time I lay down again, I could hear the beep BEEP BEEEEEEEEEP beep beep even when it wasn't actually doing anything at all. And then after about 5 it was going so constantly I gave up on trying to sleep and went and had a nice little chat with Trina. So thankful for different time zones. And intrigued by descriptions of her own home made jaw support she fashioned a few years ago out of a bicycle helmet and some tape when her son was having similar problems.

Somewhat annoyingly, it didn't alarm at all after that and Mog had a beautiful couple of hours of peaceful sleep.

And then in the morning, I made the discovery that walking isn't terribly safe either - these pedestrian crossing lights
start to look disconcertingly like our new monitor
and I found myself reaching out to grab Little Fish's jaw, much to her confusion.

We're getting a night carer. Can't come soon enough!

Tuesday, 30 March 2010

Farmer Gow's

Mog's class had a field trip today. To actual fields; Farmer Gow's fields in fact. Just the right size for the class; hay bales to climb on for those in the mood, toy tractors for those who weren't, a big covered barn full of toys and books, and a nice cafe (selling Goat Burgers) for those of us with more fragile children who couldn't possibly have coped splashing around in the muddy puddles all day.

Oh, and animals of course.

Two week old chicks.Mog wasn't sure at first.

But then
she thought they might be alright after all!

Hungry baby goats
And a very cuddly lamb
Some ridiculously loud sheep and pigs and some very smelly ferrets. Eggs to gather for the busier children, and more coffee and cakes in the cafe for we quieter ones.

A good trip. Would have been perfect if only I'd remembered to switch Mog's feed back on again once she was back in her wheelchair instead of leaving it until 6PM. But that's ok, because I didn't really need sleep anyway.

Monday, 29 March 2010


Happy Birthday. Little Fish!

The rest of us are celebrating even if the felines are resisting.

Big thanks to Grandad for helping to assemble the most complicated flatpack in the world. And to any locals reading, feel free to spot your own Birthday gift in and around the new Kitchen!

To Dream, perchance, of sleep

Sadly Friday night was not repeated. I thought I'd had three hours straight Saturday night but but it was 2 hours plus an automatic loss of hour due to British Summer Time. Side note: how can it now be BST when they're still predicting snow later this week? Ridiculous.

And last night? Last night Dad and I spent four hours assembling the flattest of flat packs (you know it's not going to be a simple job when there are 20 different kinds of screws, and the flat bits are labelled not just A-Z but then move to AA, AB, AC, etc right the way through to AM), creating something rather fabulous for Little Fish, but not finishing until nearly midnight. Photos to follow when she's had time to see it for herself.

Meanwhile Mog decided to keep life interesting, alarming and needing repositioning at 9.30, 11.30, 1.20, 2.30, 3.20, 4.00, 4.20, 4.30-5.12 (oops slept through that one), 6.10, and 6.50. And Little Fish decided to reflux somewhere around 4AM, obviously keen to ensure she wasn't ignored overnight. One sheet with nice neat coffee grounds on it, one stomach full of air; deflated, she then slept through til 8. Now why couldn't she have done the sleeping late bit over the weekend?

Photos for Tina - sorry I didn't get them to you before bedtime but there were one or two things grabbing my attention!and with the chin strapFull Face mask photos not here yet as still waiting for replacement full face mask - come on, Mr Postman.

It's not as if I'm not used to being awake at nights. Goldie used to have a monthly sleep cycle - awake all day and night at the top of the cycle, and asleep for a week at the bottom. Somewhere in the middle a happy medium. But even on her most awakiest of nights she didn't actually need me. She'd lie in bed, fizzing over with the joy of being alive, waving her hands in front of her face and ScrEeEEEEeeeeEEEEEeeeeeeEEEEEEEEEching, and rocking the bed so that we had to move it into the middle of the room. And, barring the odd occasion when she'd call for me*, most of the time she'd just entertain herself. So I'd shut every door between her and me, stick a pillow over my head, and be thankful that she was happy. And try hard not to care about how noisy happy was. This is less fun.

And now excuse me, bed is calling.

*My favourite night time memory; being summonsed in our old house, which meant staggering down a flight of wooden steps from my room to hers, not pleasant in the depths of winter and never fun at 4AM. I walked into her room and asked her what she wanted. It's possible I was not terribly polite. And she grabbed my hands from her bed, and lifted her head up to call "you put your left hand in, your left hand out, OOOOooohhhhh the Hokey Cokey!" Hard to be cross about that really.

Saturday, 27 March 2010

That mattress

It really did come as quickly as promised. The postman brought this little parcel to the door,
and we opened it, revealing this little blue tubeOpening the tube, we found a very thin, tightly rolled, blue plastic sheet.
Here's the clever bit, the tube becomes the pump to inflate it (note to self: don't lose the tube)
And two minutes later we had this.

I think it's safe to say she likes it
and it has definitely meant no more tears when sleeping on her side. In fact, last night I was brave, rolled her onto her side at midnight, and we both slept through til 4. Bliss. I feel human again. New mattress? That or the combined prayers of just about everyone we know. Yesterday morning, as I was scaling Mount Everest trudging back from school concentrating on remembering to lift one foot up and put it down again before picking the next one up, I was overtaken by our Vicar, who commented that I looked tired. Do a Vicar's prayers count for more than the common people's perhaps?

Whatever the cause, I'll take it. Four hours straight plus catnaps either side; I feel human again. Thanks be to God.

Friday, 26 March 2010

Dear Me,

Wake up, sit up, don glasses, place feet on the floor, stand up, then walk out of the bedroom. Incorrect order will result in tangled bedsheets and misplaced glasses, and will not achieve leaving the room.

When dressing, it is wise to put underwear on before the outerwear. You are not Superman.

The monitor won't stop beeping if you only dream you've repositioned Mog.

If you can't remember the name of your friend's son, you probably shouldn't get in a car and drive to meet them. You do not get bonus points for working out the boy cannot be called Josephine.


Thursday, 25 March 2010

Disney Delights

Helen House Hospice is something really special. 90% of the annual £4.5 million running costs come through voluntary donations. From large scale corporate sponsorship down to the 50p profit on a second hand t-shirt bought at one of the Hospice Shops, it all goes towards fairly important stuff, like the chance for me to get a decent night's sleep seven nights a year. I'm a fan.

It's not all money though. There are the crafters who donate quilts to be given to the children, a stitched up cuddle to comfort in difficult times. These ones came through our community nurses, but Project Linus and other groups give to the hospice too. And then there are the companies who donate goods. The girls hit it lucky this time; a Disney delivery mid-way through their stay. Boxes and boxes, dressing up clothes, craft stuff, DVDs, toys and games and generally all things Disney. As the care staff took the cardboard Tinkerbells and Frogs to refresh the walls in the sitting room, the girls were allowed to make their own selection from the boxes of delight.

Mog took her own time to decide between a new DVD and a snuggly blanket. She did eventually choose the blanket, which has been worn so constantly it's now waiting by the washing machine, muddy tramlines running across it from where she successfully kicked it off mid-walk yesterday.

And Little Fish? Little Fish's life was completed with the discovery of High School Musical things.
A note book, a drinks cup with a super whirly whizzy straw, just long enough to make it impossible for her to slurp more than the tiniest sip at a time (which is all she's supposed to have); commercial value probably not very much. But value to Little Fish,
fairly extreme!

It's a great place, Helen House. But it's also a bit of a scary idea for Little Fish. This is somewhere where Mummy isn't necessarily on hand every two hours to meet all her personal care needs. It's somewhere where new people come and entertain her, and where she has to trust new people again to adjust her mask and do her tube feeds.

But now, it's also a place where people give her the world's best presents. It's a place where a team of staff are on hand to keep her entertained, where there's a messy room just waiting for her to cover it and herself with paint. And if that sounds like bribery, well, perhaps it is. But it's a place where she is beginning to feel safe, somewhere she is beginning to recognise as special for her as well as just special for Mummy. And if it takes bribery by Disney to get that, I'll take it!


Tuesday, 23 March 2010

Thinking through treacle - ROSY to the rescue!

Tiredness takes its toll - my thought process is somewhat slower than usual. Indvidual thinks make a good start for themselves, but seem to take the long route through minor unused mental lanes, resting in laybys before finally landing at their destination. Usually substantially later than expected, occasionally permanently lost in transit.

So, it's taken around a fortnight for the initial thought "Mog's breathing is less obstructed when she sleeps propped on her side", coupled with "but side sleeping is really painful for her as the pins and plates in her hips dig in", to meet up with their natural third thought - "I wonder if a pressure relieving mattress would be more comfortable for her to sleep on?"

Having successfully connected the three thoughts, it's taken another week or so to move the thought out of the layby and into action "ROSY have some inflatable mattresses available for families to borrow; I wonder if we could try one out?"

I emailed ROSY's George last night. This morning, there was a response waiting for me. "The mattress is ordered and paid for and will be with you tomorrow." No "Oo, are you sure she needs it?" No "Let's just get the rep out in six week's time to talk about it", no "you've just missed the funding panel, we'll try again next month", no forms to fill out or phone calls to make. One simple "do you have one we could try?" email, and a response explaining that for hygiene reasons they don't lend them but will buy us one no problem.

So whilst my own thoughts might be on a go slow, it's good to know that ROSY's are working superfast.

Thanks, George!

Monday, 22 March 2010

Sleep is for the weak

Mog is tired. Mog wants to sleep. But every time Mog slips into a deep sleep, Mog relaxes. And every time Mog relaxes, her airway collapses. Mog falls into a deep sleep every sixty to ninety minutes throughout the night. And I have to wake her up. Mog is tired. So am I. Which is possibly why this reads like a Peter and Jane book.

In the meantime my tired mind is running on random thoughts.

How is it that yesterday, despite the fact that the carer we were expecting did not turn up or let us know she wouldn't be turning up, we managed to be all three dressed and actually early for church? And yet today, with Little Fish getting up an hour earlier than planned, and Mog's carer turning up despite me not expecting her, we were running late for school?

I wouldn't say we were especially presentable for church yesterday - having scoured the house for cleanish clothes for the girls, I threw my own on at the last minute before walking out of the door into the beautiful Spring sunshine. A gentle breeze blowing the cobwebs away as we walked to church, enough of a chill to give the girls rosy cheeks but enough warmth to dispense with coats and make do in my case with a nice long cardigan I hadn't worn for a month or so.

Still, hair brushed (and then whipped out of shape by the wind), clean faces, fresh teeth, happy girls. We walked into church and stood by a radiator for a while waiting for Godzone to be ready for us. The radiator smelled a bit stale, a bit like something rather unpleasant had been spilled inside it.

But, doors opened, the girls wheeled in, and I went to sit down in church. The stale radiator smell followed me through and I wondered if all the heating had been somehow polluted. Something in the air perhaps? Friends arrived and sat next to us, and assumed there was an unfortunate incident with an incontinence pad. And then I realised the smell was following me around. And that lovingly cherished cardigan which had been out of sight under Little Fish's bed stowed away for the last month was actually covered in stale cat piss. "They'd make a good rug, wouldn't they?" said my neighbour as we stood to sing the opening hymn. People gave us a wide berth as we waited for coffee; I'm not entirely sure why...

And on a totally unrelated note, I'd like to know the answer to this:

Why is it that if a group of businessmen and women decide to adjourn to a restaurant it's called a working lunch, but when a group of stay at home mothers meet up for lunch or coffee, bringing their children and therefore their work with them, we are called "ladies of leisure" ?


Saturday, 20 March 2010

Free Rice

Coming home from the hospice, everything comes crowding in again. Nothing's really sorted, nothing's really resolved, some people are trying to do some things to help, others are agreeing to humour us, but the biggest issues are still all too present.

So, I'm escaping. Join me.

Improve your vocabulary, while away too many hours, and collect smug points for feeding starving people if you get the answers right.


Friday, 19 March 2010

Hospice is

A happy place.
A restful place

A place with time and space to have discussions about the big things
Without forgetting to take time to enjoy the little things
Somewhere to turn those mental engines off for a while

And let others share the load.
Hospice is a place to remember

A place to reflect on the changes and troubles and stresses and worries

And a place where those troubles and worries can be faced, and acknowledged, and can therefore be put into their rightful place rather than becoming huge and overwhelming.

Hospice is a place where people aren't afraid to talk about the unthinkable
And where death can be seen as a part of life. Where decisions can be taken about medical treatment, looking at the whole of a child's life rather than its component parts, looking at overall quality of life now and in the future. Having the freedom to explore the fact that certain measures to prolong life may not actually be in the child's best interests, and trying to work out where attempts to sustain life may actually end up merely prolonging the dying.

Whether there are two children sleeping peacefully or eight children playing drums, hospice somehow remains a peaceful place

Where, no matter how busy the staff may be, someone is always available for a chat.

And despite the intensity of the conversations, the seriousness of the problems, the complexities of the child, hospice is a happy place.Tia

Wednesday, 17 March 2010

Lazy Days

Feline fluidity, I love it.

A peaceful day today, lots of sitting down with my girls around me, people bringing food and drink to me, and time and space to talk about the bigger things with doctors and nurses who understand them. I think we might be in the right place, with people who can see Mog as a whole person and as a part of her family, rather than as a collection of isolated issues and diagnoses. I wonder though why it takes a palliative care team to manage this, surely it shouldn't take thinking about the end of life to look at the whole of life?


Tuesday, 16 March 2010


Mmmm hospital breakfasts. Although this coffee cup was somewhat disconcerting.
It claims to be made from at least 10% "post consumer fibre." Maybe it's just living with constant code browns, but I don't want to be that close to any kind of fibre claiming to be "post consumer." The coffee inside was alright though.

Lots going on at the moment; Mog's monitor demonstrating just how rubbish her sleep really is, Little Fish demonstrating the same thing warranting unpleasant nights for her for the future, and both girls' sleep needs meaning my own sleep not happening very much.

Tonight Little Fish is at the hospice and Mog and I are at home. This is the first time I've ever left Little Fish at the hospice without me; I would not have chosen to leave her there without Mog as a familiar face. But we'll be back before she's dressed in the morning, and sometimes these things are unavoidable.

Meanwhile not only is she facing a night at the hospice without us, I am facing a night at home without her for the very first time. We've been apart before, but never when I've been at home and she hasn't. Odd.


Monday, 15 March 2010


Sometimes I think I make life difficult for myself. Why else would I be even bothering to argue with Little Fish, who remains adamant this is a model chicken.

Back on the ward again tonight, same place, different child. Tonight I get to watch LF's numbers go up and down as she has her annual sleep study. This one to check the adjustment we made after her home one have been effective. I can't find reference for most of the figures, so I have no idea and won't until morning. This is probably a good thing; no point in staring and wondering, I may as well sleep and know the many alarms aren't Mog's and there for are not my responsability. A three bedded bay and three children having sleep studies. LF the only one with a Nippy, we are not popular with the quieter sleepers. Then again, she was in bed at 6 and had to put up with overenthusiastically loud toddler on one side and grumpy spiderman pyjama clad boy on the other with a parent who clearly knows every member of staff on the ward and has to share her newest news with all of them. So maybe this is her revenge. And maybe not.

Mad day tomorrow; hope the wardround is early and then dash to Helen House to pick up Mog before they kick her out at 11. Head home to check post and see if we have a date for Mog's CT scan, feed and placate the cats, then back to the hospice to drop off Little Fish. We will all finally manage a couple of nights proper respite on Wednesday. It begins in 42 hours. Not that I'm counting or anything...


Sunday, 14 March 2010


Sometimes, you just have to put aside everything else that's happening, and celebrate. A huge party last year, the unspoken thought in most people's minds that this would be our friend's last Birthday Party. One year on, and we're celebrating his sixth Birthday. He's an amazing lad. And it was lovely to see him really wide awake and enjoying what was going on around him. And for future reference, I'll be bearing in mind the fact that blowing the smoke from seventy-umpteen candles into a child's face is an effective way of ensuring a good nasal and sinus clearout!

A big giant bouncy castle outside for more active children, coffee and cakes and conversation for the grownups, and for Jack's less mobile friends, a special Soundabout session.
Truly interactive music, a group performance from the children who would in many parties be the ones shuffled off into the corner.
No chance of that happening here.
Even Little Fish, the champion "I not like parties and I not going and I will sit outside on my own acos I am not liking the party" whinger decided this one might just be fun.

Good times.

Friday, 12 March 2010

Fretful Friday

So, tonight Little Fish cried herself to sleep. Why? Because I made her wear the full-face mask for her Nippy. She doesn't like that one; she can't suck her thumb. But she's got a sore on her cheek and an ulcer on her lip and her face needs a break from the nasal mask. So she had to just deal with it.

And then Mog cried herself to sleep. Why? Well, she's going through another "I must grizzle until I drop off" phase, but she also seems uncomfortable. Four movicol induced code browns can't be helping with that; her abdomen has wrinkles where it's finally deflating. Not fun. But, not much we can do about that either.

Friends in Florida are watching their son undergo surgery to replace a blocked shunt.

Friends locally said a final goodbye to their young son this afternoon.

And friends living somewhere between Florida and here have had the security pulled out from underneath them, and just been informed that the end of life plans they'd made for their child may not be allowed to happen that way.

Putting that in context; I have two daughters, both home, both currently in reasonably good health, both tucked up in bed and asleep. I am blessed.

Excuse me; I feel the need to eat a big bowl of pasta.

Wednesday, 10 March 2010

Two minutes

We were discharged from hospital on Sunday. "Croup" said one doctor, "Chest infection but probably not but maybe and let's treat it as though it is even though it most likely isn't" said another.

The discharge letter came through today "Upper Airway Obstruction secondary to Cerebral Palsy." Apparently she was admitted with "Coryzal symptoms" , which my google-fu translates as "common cold". So far, so unremarkable. Needed oxygen. No news there either. The letter indicates she was initially treated with a Budesonide nebuliser. News to me; I guess they must have done that after I had left her. No mention, oddly enough, of the saline nose drops one doctor insisted would cure her if we just squirted them up her nostrils every 10-15 minutes. And then a list of other treatments they'd given her, including the transfer over to HDU. And one little sentence, buried in amongst it all. "She had apnoeic episodes and had an episode of complete obstruction lasting two minutes."

Two minutes? She stopped breathing for two minutes? Was this not something it might have been considered appropriate to mention to me at some point? Apparently, after this, she continued to have "occasional desaturations at night which responded to oxygen." And then they discharged her with a recommendation for a saturation monitor.

Well that's great. We've got the monitor. Now I have warnings of her "Occasional desaturations" and get to poke and prod her until she rouses up out of her deep sleep enough to take a deeper breath. I wonder how often they have to happen before occasional becomes regular or frequent? And I wonder how she's supposed get a proper night's sleep if we have to keep poking her to get her breathing properly?

And I wonder what happens next time she gets a cold?


Tuesday, 9 March 2010

This is what pleased to be home looks like

And I love it!



12 times in 20 minutes is how often I had to call "Girls!" to get them to listen at Guides last night - bring back our signing friend please!

1 girl with 2 friends is how many girls locked themselves in the toilet last night because when you're that upset, the loo's the only place to go.

17 kisses and cuddles is what Little Fish asked for before going to bed; a request I was happy to fulfil.

60 degrees C is what I accidentally washed my clothes at last night; it's got the wheelchair cover clean but I'm not convinced the T-shirts appreciated it.

13 minutes is how long it took me to relight the boiler last night, and 25 degrees is the temperature I accidentally left the thermostat on whilst trying to get it to fire up. Break out the shorts this morning!

1 hour to go until Little Fish's first ever school assembly - she has a sentence "All our Mummies are very special". We've been practicing. So far, this consists of me prompting with "all our?", and her burying her head in her lap and asking for ham sandwiches. Fun times ahead.

45 minutes is how long we had to wait after our hospital appointment yesterday, for th lorry which had parked in front of our van to lift a set of portaloos over the top of it. I didn't feel inclined to argue.

And, by a curious coincidence, 45% is where Mog's SATs were at 1 this morning.


Sunday, 7 March 2010

No place like home

A difficult start to the night for Mog, and a frustrating one for me. The discovery that one drug had been missed off the drugs chart, explaining some of the problems she had last night. This the day after discovering another drug had been missing, and a few hours before realising one of the PRNs was incorrectly dosed too. Oh, and then the night nurse came in to lecture me about using out of date medication - whilst I'll take responsibility for it being out of date, I'm not sure why it was my fault no one noticed on Wednesday, Thursday or Friday. Mog's oxygen levels dropped as soon as she dropped off to sleep in the early evening, but a good seizure had them up at 100% again - jolly useful thing those great gasping fits she has sometimes! And then she had a beautifully settled few hours' sleep.

So this morning the great respiratory man came around and reviewed her, and decided she could go home. Diagnosis? Hmmm. Deterioration. The good news, she won't need surgery as it isn't her tonsils causing the problem. The bad news, it's floppiness at the back of her throat so surgery won't help. Treatment? Keep her in a good position. And he thinks having a proper SATs monitor at home, one which she can wear overnight and which will alarm if she drops very low, would be a sensible idea. Of course now I'm sitting here at home and wondering what we do when the monitor alarms if just getting her upright again doesn't in fact help, but at least I can sleep at night until that happens rather than lying in bed wondering if it's already happening. Or will be able to, when we get the monitor.

So, home. One very very happy Mog. One mostly happy Little Fish, allowing the events of the last few days to catch up with her and so being a little precious. Three delighted cats, one of which has been begging me to take a hairbrush to his tail and back legs, and de-leaf him. One house which appears to have multiplied its chaotic norm in my absence, not entirely sure how that has happened but I'm reassured by the fact it has. At least this proves it isn't all me. Or something. And one very tired me, not quite relaxed about having Mog at home knowing that she does horrible things overnight, but on the whole rather jolly pleased our family is back together again and hoping the next hospitally emergency is a long way off.

And realising, as I write this, that we are in fact at home and that this does in fact mean I actually have to go and sort out the drugs myself; they aren't going to magically appear on a tray held at my elbow as I swoosh them through Mog's gastrostomy. So I'd better go and do that.


Saturday, 6 March 2010


Mog earlier this evening, deciding hospital wasn't necessarily the worst thing ever. Of course that was before Little Fish got to go home with Grannie, and Mog got to stay here with me and be pumped full of IV antibiotics. She's now in bed beside me and grizzling her way to sleep.

Mog has been hot and sweaty today, a mild fever and pouring dribble - but not drowning in it. No longer hooked up to monitors or oxygen, we escaped the ward on several occasions for coffee and lunch and other diversions. All diversions welcomed, frankly.

Current thinking is that we'll be here for the weekend at least, the doctors want her to see respiratory and neurology type people to get an idea for what's happening. She has been very stiff today after all the recent floppiness. Somewhere surely there must be a balance. She's keeping her sats up nicely during the day (as long as we switch the monitor off as soon as she's hit 98 and before it can drop again), but she's been showing people what she can do when she's asleep - I thought 66% was a record on HDU but last night she managed 55%. We'd all be happy for her not to repeat that, or at least not except in front of exactly the right medic to sort it out. So she's hooked up to a monitor again tonight and we'll see what she has in store for us.

Having stopped crying, she's now settling beautifully with a nice neat 96 for pulse and o2 both - very symmetrical. I know it's not just about the numbers, and in fact I'm nicely settled in a spot where I can't see the monitor unless I get up which is handy. But I am so relieved that finally she's shown the doctors what she can do - it's been quite a lonely spot here, trying to convince people against the evidence of the sleep studies.


Friday, 5 March 2010


A much better night followed by an even better day. This afternoon saw a return of evil Mog, kicking hersister and tipping supplies off her wheelchair tray as we packed up ready to leave the ward. Huge excitement and big smiles. And then we got upstairs, and the whole world realised she had been expecting to go home. Huge weeps and utter misery and one soggy dejected and mightily hacked off little girl.

Me, I'm less unhappy. We have a room with its own en suite shower! US readers may not appreciate this for the luxury it really is. And Mog is off the oxygen and keeping her sats up reasonably well. Just need her to stick at it overnight and then I'm sure we'll be talking home again. Although we won't be mentioning that to her until it's for definite.

I'd like to get home, but more than that, I'd like to get to the bottom of her recent problems. So I'd really like tonight to be nicely typical. And meanwhile, if I ever suggest bringing bananas into hospital, someone please shoot me. Day three and they're stinky. But if this is the most I have to worry about then life must be pretty good.


Thursday, 4 March 2010

A better day

an awful start but a much better day. Slow but steady improvements, although the constant splutter drown cough has been replaced by some deeply unpleasant greenish grey gunk which has been scraped up and sent away to see what it might be growing.

Down to 2 litres oxygen tonight, still on IV steroids and now starting antibiotics too. Tired but happy; I have abandoned her and come up to the parents room at the very top of the hospital. Creepy place but it has a bed so I'll not complain.

Going to be in for a few days I suspect but hopefully out of HDU if she has a decent night tonight. Friend is staying with Little Fish tonight and has even committed to dressing her as Lola from Charlie and Lola for the school's world book day celebration tomorrow. And yes, they are celebrating a day late, I haven't just lost a day!

Next step for me, work out how to clone myself as school is, rather inconsiderately, closed for the weekend from tomorrow afternoon and my stock of Little Fish sitters has run out. Not sure if she'll be allowed on HDU; another reason to hope Mog improves enough to be elsewhere from tomorrow. Although where that elsewhere will be I'm not quite sure - beds are still an issue I think.

Still, for now, she has one and I have another and we're only half a dozen floors apart. And whilst she may have snoozed most of the day away, I did not. Going to make up for lost time.


On the move

The phonecall you never want, especially at 4AM. Mog's not been having a good night, they have one more nebuliser they want to try (adrenaline?) and then if no improvement they'd like her to go to HDU (High Dependency Unit). Only, there are no HDU beds...

And now it's 5 AM and the doctor has just rung again to say no worse, but no better, and they have miracled up an HDU bed for her. So very pleased she wasn't sent to Banbury. And whilst hating the need, very very pleased she's moving to HDU - much higher nursing cover there.

Only two hours now until someone else will be here and I can abandon Little Fish and go and hunt through the bowels of the hospital to find the basement based HDU.


Wednesday, 3 March 2010

Importancies updated

No answer from the neuro, and one increasingly tired Mog. So we went for the GP option instead. GP diagnosed chest infection, based on low sats (88ish), rapid breathing, and general "there must be something wrong-ness". Phoned the hospital, hospital said to bring her in for assessment but that there were no beds so she couldn't be admitted. And would have to go to the satellite hospital 40 miles away if admission needed.

We zipped home for meds and pyjamas, called the prayer warriors into action, and drove to hospital. Green lights all the way, halving the journey time.

Parked the bus, unloaded, walked through the hospital to A&E with Mog snurfling mightily as we went. Arrived in paeds A&E, the doctor sent us back out to the main A&E to register. Not used to that; we normally come in by ambulance. So, out of paeds, back to the main one, join the queue. The queue melts away at the sound of Mog, and a green-clad doctor grabs Mog and whisks her back through to paeds leaving me with a pile of forms and a bemused Little Fish. I follow Mog to find her already hooked up on O2 and the doctor who sent us back to fill out the forms hoding somewhat sheepishly under a counter.

Different doctor, different diagnosis; this time the theory is viral croup. Dexawotisit failed to help, so he decided saline drops up her nose every 15 minutes ought to do the trick. It didn't.

He decided to admit her to Banbury, I had a bit of a meltdown, he aid all the staff would do their best, I asked how it was in her best interests to send her 40 miles away without me, he failed to understand why putting her in an ambulance with a nurse who had met her for the first time 1 hour ago and been very busy elsewhere ever since, and entrusting that nurse with the job of handing over to a brand new hospital staff who had never met her either, might be a problem. He kept trying to reassure me that she wasn't "that" ill right now. The nurse, thankfully, understood my concern was less about how ill she was right now and more about her baseline medical condition. And will forever be my favourite nurse, because she managed somehow to persuade a full hospital to find a spare bed. Not the medical ward, but the same ward we ended up in last time when the hospital was full*. Staff somewhat miffed to be taking a new non-gastro patient in the middle of the night, but cue one very very relieved me.

Big points to Little Fish who was outstandingly excellent all evening despite being absolutely exhausted. She waited with the porter during X rays, she didn't fuss when Mog needed my lap, she pleaded for bed a few times but mostly chatted quietly and tried to soothe Mog who was not appreciating all her attention.

And now I'm off to catch what sleep I can and try to work out what I need to do tomorrow in order to get up to the hospital as early as possible. Grandad has agreed to walk Little Fish to school so hopefully I'll beat the doctors to the ward. We will however miss the dentist again - poor Mog's been waiting nearly a year now to get her teeth de-scaled.

Still no idea what this really is, but the oxygen's helping, and that has to be good. Prayers appreciated for a safe night for Mog - I HATE leaving her in hospital although I'm much happier about the hospital which actually has her medical teams in it than the one which has in the past refused to admit her as she's generally too unstable for their peace of mind.

Night all,

*query - if the hospital is forever full and having to divert patients, would it not make sense to increase the capacity of the hospital?

Procrastination revisited

For my friend who couldn't find it here or here

Cartoon by Dave Walker. Find more cartoons you can freely re-use on your blog at We Blog Cartoons.

The Importancy Room

Mog's not quite right at the moment. Not desperately ill, not got a chest infection, just drowning, demonstrating her incredibly irritating stridor, and obstructing merrily if she falls into any less than perfect position. She's tired - it's hard work breathing underwater - and I'm tired - it's hard work trying to keep her in a position where she isn't breathing underwater.

She's certainly not ill enough to need a 999 call. She's not ill enough to be admitted to hospital. But she isn't well either. It's not a GP type of problem, and in any case our GP has no appointments for today. It's not an emergency issue, no point going to A&E.

So I am proposing an Importancy Room. NHS policy makers please note. This would be a place you could go with issues which really aren't necessarily immediately life or death or broken bones, but which can't wait six weeks to be seen in the next available clinic.

Meanwhile, in the absence of an Importancy Room, anyone got any suggestions? There's a call in to her neurologist, we've already spoken to her paediatrician. When she isn't drowning she's quite happy, when she is, we're all somewhat miserable.



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