Tuesday, 30 October 2007
I have extended the deadline for entering this and will now keep it open until Sunday afternoon. I will close this when the girls have their evening meal and let Little Fish do the drawing before she goes to bed. Please remember that I need to be able to contact you if you win or I won't be able to post your prize.
Shannon at Rocks In My Dryer is hosting a blogging giveaway. Click here to read the guidelines and here for a list of participants. If, like me, you don't live in North America then do read each participant's offering carefully as a fair few are unable to send their gifts overseas.
Don't worry, what I'm offering is very small and lightweight and may be posted anywhere at all, although with Royal Mail being what it is at the moment, I can't promise it will actually arrive. But since it's free to you, what do you have to lose?
This is what I'm offering. I picked it up at our local craft fair last week.
It is a beautiful brooch made from a real oak leaf. Here's what the makers, Leaves of Gold say: "This delightful piece of jewellery is hand-crafted from a real leaf. Firstly each piece is encased in copper for strength and durability then finished in a rich layer of 24C gold to preserve nature's fine detail. Each item is as unique as you are."
It's beautiful and very tactile. And is anything more autumnal than a fallen golden leaf?
For a chance to win this brooch simply leave a comment on this post. You don't need to be a blogger; I do however need to be able to contact you so make sure you leave an email address. I will close comments for this post on Friday, November the 2nd and will choose a winner at random on Saturday. Please note, if my internet connection dies over the weekend then it may take a little longer to select the winner but comments must be left by the end of Friday. Don't be shy!
Monday, 29 October 2007
Needless to state, it didn't quite work out that way.
Dream Mother was tireless, working with a smile on her face at all times. Calm and caring, she put her children to bed then tidied the house, sorting laundry and washing up, ensuring that sink was shined every night before slipping between her clean and sweet smelling sheets.
I shuffled the girls into bed then sat down with a large cup of coffee and a slice of pumpkin pie. Leaving the mug and plate by my chair I crawled into bed, knocking over last night's water glass as I did so.
Dream Mother took her children for a walk every single day, no matter what the weather was like, fresh air and exercise being an essential part of childhood.
I sit Little Fish on the windowsill so she can watch other children getting fresh air and exercise and I can grab a snooze on the settee.
Dream Mother made meals so appetising and filling that her children never needed to snack between them.
I give Little Fish a bowl of chocolate sprinkles and call it hand function therapy.
Dream Mother sat up all night when her children were ill, mopping foreheads and rubbing stomachs, stripping soiled bed linen and sluicing it by hand before putting it into the washing machine and sorting out the bed with gleamingly clean fresh sheets, staying by the child's side until they are asleep again and waking hourly to check on the child throughout the night.
Unless the child is wide awake and miserable, I mop the worst off, cover the soggy sheet with a fat fluffy bathtowel, set a CD playing low and crawl back into bed ready to deal with it in the morning.
Dream Mother has such perfectly raised children that they never play up overnight anyway, but if her child did have sleeping problems she would again be willing to sit up with them, night after night, until they worked through it together.
I hit the repeat button on the CD player and hope for the best.
When nothing else works and the child is disorientated by the hour change as well as being uncomfortable post operatively, Dream Mother sacrifices her sleep and enjoys one to one time with her child, appreciating the smiles and giggles she gets in return for her efforts to entertain the child.
I sit the child beside me, fire up the laptop and write a list like this.
Sunday, 28 October 2007
I can't believe it is now over two months since she died. I still have her headphones and walkman, favourite toy and collection of stories sitting in the passenger seat of our van. I haven't had a passenger in the van since I returned from hospital, I've had no need to move them. Some of these things will be buried with her at the request of her relatives, but what about the other things? The pile of batteries, they'll go into other toys, but what do I do with chewed old story books with pages missing and defaced? Just throwing them out feels so wrong, impossible. But to keep them feels wrong too. So in the meantime they sit in the van getting ever more battered and causing my heart to drop every time I catch sight of them. Her handbag, her purse with her dinner money in it, the music box she listened to her entire life, what do I do with them? How do you dispose of a life? How do you not?
I dream eulogies. But when I wake up I can't remember them. How do you sum up a life? We find ourselves saying "Goldy would have wanted this to happen, would not have wanted that to happen". But the truth is, Goldy wouldn't have cared about any of this at all, provided her songs and stories and cuddles kept on coming and no one shouted. Trying to plan a funeral in the knowledge that Goldy only managed to sit through church services if she had a constant supply of fruit and crisps, and a story whispered in her ear. I'd like to hand out raisins and read her favourite story but that would upset other people who knew a different Goldy.
Goldy was just Goldy. She believed the rest of the world existed to serve or entertain her, and ignored anyone who failed to provide either service or entertainment. She wasn't smart, she had no couth at all. She wasn't kind, she didn't care for other people's feelings except how they impacted on her. She was just herself. There was no pretence to her, she didn't hide things, she didn't know how to be two-faced. She didn't hold grudges, she didn't stay angry about things, she was rarely so upset that whispering rude words in her ear didn't cheer her up.
But this isn't the child her other family knew. So now Goldy is being reinvented, her past history is being reinvented, and I am being reinvented to fit other people's requirements. Or perhaps they're right, I'm wrong, and I didn't really know her at all. It's possible.
I think it's entirely possible that we all knew different aspects of Goldy, just as we all have our own opinions about what happened to her, how and why it happened, and what should happen next. I know that although I still don't understand how this happened, I still bear no ill-will towards the carers involved. Perhaps I should. I am being told I should hate them, that they
should be killed and die painfully, that they need to be imprisoned and should somehow pay for what they did? Do the people who tell me this really think they aren't paying already? How do you live with the knowledge that your actions led to the death of another human being? I don't think anything anyone can do could possible add to that. And in any case, there but for the grace of God go I. This could have happened on my watch - I hope it never would have, but it's not beyond the realms of possibility. How can I hate someone for making a mistake?
In the eyes of some people this means I love Goldy less. I also love her less because I can get out of bed every morning and get on with the day, I can laugh and sing with Mog and Little Fish, make chocolate brownies and knit blankets and I have (for now) rejected the offer of bereavement counselling, and I can (most of the time) talk with the funeral director without breaking down completely. Trust me, I mourn. I loved her when she was alive, I love her still now that she is gone; I keep trudging along with our day and then little things catch me out; her handbag still in my van is one. I'll sneeze and still expect her to be laughing. The number for her care home is still on my speed dial. I have started Christmas shopping and it's automatic to be keeping an eye out for things she might actually enjoy, automatic still to start hunting out that perfect photo for her to send to her other family. There are pizzas in my freezer bought for when she comes to visit and how can I eat them now?
I love my oldest daughter dearly and I miss her every day. Her absence wakes me in the night on the rare occasions when Mog and Little Fish fail to do so. But my love is not measured by my outward appearances; nor is my grief.
Wednesday, 24 October 2007
I know this particular friend is as keen on chocolate as I am, so decided to
To make these, you will need
400g Toblerone. Ideally lots of the tiny Toblerone bars, but Budgens didn't have them so I had to use 2 200g ones.
350g plain chocolate, the higher the cocoa content the better.
3 tablespoons strong black coffee
1 teaspoon vanilla extract
75g self raising flour
Health warning. These are not low fat, not low calorie, not low sugar. These are seriously bad for your diet.
OK, end of warning.
Begin by melting the butter and plain chocolate in a saucepan over a very low heat. Purists will tell you that you should do this in a double boiler, but I find it works fine if you let the butter melt a little before adding the chocolate, and keep stirring. important - you are melting the plain chocolate only, NOT the Toblerone.
Set this aside to cool down and unwrap your Toblerone.
If unwrapping it yourself proves too time consuming, simply leave it within reach of your toddler whilst melting the butter and chocolate. It will be unwrapped and licked in record time. I'm not sure why the licking is necessary, but apparently it was unavoidable.
Chop the remaining Toblerone roughly. With the tiny bars it is enough simply to break them into pieces. With these bigger bars I needed to chop each triangle into 3 or 4. Like this.
Set aside. Side note - if, like me, you choose to place your chopping board on your draining board, and if, like my kitchen, your dishwasher is underneath your draining board, do not leave this chocolate standing on the draining board whilst the dishwasher is on its drying cycle. This chocolate needs to be firm when it enters the brownie mix, people.
Now take the eggs and sugar and whisk them until they are smooth. Add the coffee and vanilla essence.
Next add the melted chocolate and butter
Isn't that pretty? Keep stirring until it's all a rich chocolatey colour, and then stir in the flour. Finally, stir in the chopped Toblerone, and pour into a greased and lined baking tray and bake at 180C until they look done on the top and the mixture doesn't wobble when you tilt the baking tray. Or, until about 2 minutes before they look like the right hand side of this picture:
Ideally one would line the baking tray with greaseproof paper or a silicone baking sheet, but Little Fish has destroyed mine and tinfoil was all I had left. If you do use greaseproof paper, then grease it on both sides to get it to stick to the pan.
Allow to cool in the tin for extra fudginess and then cut into pieces
Eat. Enjoy. Waddle away from the table.
Since I prefer not to post photos of my girls here, Maddie will today be demonstrating some of my girls' daily living equipment. Please excuse her hair, she's older than she looks and she's embarrassed to admit that she's lost her hat. I would have brushed it but she also has a bit of a balding problem going on (don't tell her I told you that).
We have a variety of different aids available from the low tech
to the high tech
Little Fish loves to be propped up against the back of the settee to watch the world go by, and doesn't even realise she's doing her physio as she stands there. It's great for her hips and the gaiters give her legs a good stretch, but she isn't safe to be left there alone (Maddy is older and wiser and fairly well padded). So the Rabbit Stander gives her much more freedom to move herself around whilst still sneakily strengthening her hips, and makes sure she's safe even if I do have to go off and do other things.
For a more able child the gaiters and AFOs might enable the child to stand or walk leaning against a regular toy, like this
Maddy likes taking her smaller siblings out for a stroll.
Alright, let's talk about seating.
Maddy can sit quite well all by herself
However she is very floppy (knitted limbs don't have much muscle tone). So sometimes we give her a bit of help
Look closely and you'll see she's still wearing her splints and her Ankle Foot Orthoses (AFOs, hard plastic splints moulded to fit her feet and hold them in a good position. Most children who wear these put their shoes on over the top, but Maddie's boots are knitted to her ankles so she gets to wear them underneath). The padded scarf is another low-tech (or possibly No-tech) aid. Little Fish, like Maddie, is very floppy. Mog is very stiff most of the time; if she were sitting in this chair we'd tie the scarf lower down to stop her from pushing herself out of the chair by stretching out her hips.
Two ordinary chairs, and the girls can sit in them for reasonable periods of time. However I'd like to introduce to to our TumbleForm
This seems to be the standard "supported chair" just about every parent of a disabled child gets offered. It's comfy, it's wipeable, it's a good "plonking" chair for slobbing in front of the television. It's even quite handy for the odd snack. But it's not much use for joining in family meals or for taking part in conversations when everyone else is standing up.
This is where you need our Leckey Advance chair. This chair goes up
and anywhere in between
We like this chair!
Getting out and about in the wider world can be interesting too. We started out with a variety of different baby buggies and prams. Here's our favourite, the E3.
This was and is our favourite mainstream pushchair. It's big enough that even long-leggetty Mog still fits it, it's supportive enough that either girl can fall asleep in it, and with the double kit we can get both girls in it or one girl and a baby. Mmm babies. We had a baby for Christmas last year, wonder if we'll manage it again for this? OK back to the point. It's a great chair, but see how Maddy is leaning to the left? Left in this chair for too long it would be easy for Maddy to develop problems with her hip and spine. What she needs is a chair with decent postural support, like this
This is Mog's Foam Karve. This has to be the best wheelchair we've ever had. It is carved out to fit all the kinks in Mog's body, and she is supremely comfortable in it. It's so comfy and so supportive that Mog often chooses to sleep in it when she is unwell rather than try to get comfortable lying down.
Of course, not every disabled child will need a wheelchair as supportive as this. And when Maddie is less tired she very much enjoys using Little Fish's KidActive.
She could do with some footplates though. We had to take them off for Little Fish, as she is too small to use them and they just looked silly.
At the end of the day, there's nothing nicer than a good bath. That's easier talked about than carried out when you have a child like Mog, a child with a body that twists and turns and slips and slides and drowns. There are dozens of different bath aids available to help with this. Before we had one, we used a large towel in the bottom of the bath, like this
Please excuse Maddie's splints and clothes. She's a modest little thing.
The towel helped us in several ways. It provided a measure of padding for Mog and kept her from bruising her skinny hips and ankles and shoulder blades. Wet, it provided a decent non-slip coating so stopped Mog from slithering all over the bathtub. And with the top end rolled up it gave Mog the beginnings of a headrest, lifting her face up out of the water and stopping her from drowning. Always useful. It was still necessary to keep at least one hand on Mog at all times though. So we were very pleased when social services provided us with this Robbie instead.
This chair has the added advantage that we can use it as a deckchair outside in the summer. It's very comfortable, easily adaptable as the child grows, dries quickly, is light and easy to take out of the bath when not needed, and folds up nice and small for when we go away. It also sits quite low down in the water, so you don't need gallons of water to get a decent bath, unlike some bath aids we have tried.
Little Fish on the other hand prefers to use a baby bath. She's much too big to use it in the ordinary baby way, but finds the smaller shape gives her a bit more security, she can lean back against it and hold on to both sides, which means she has more scope to play with things in the water.
Like Maddie here, Little Fish also likes to use her bath when she is practicing Long Sitting. Long Sitting stretches out her hamstrings which is important for children who do not walk. Little Fish finds that when her gaiters and AFOs are on it is very difficult for her to balance when sitting on the floor. So we sling her in the baby bath, or in a cardboard box, or on the corner of the settee. There are corner sitters available from various different disability living equipment suppliers, and if Mog were still long sitting then she'd need one of the more specialist ones to support her head and back as well as her hips. But this does just fine for our Little Fish.
One day we'll have a wheelchair accessible swing in the garden to match our roundabout (see top right). But until then, we all three enjoy our swingseat.
Have a good day!
Sunday, 21 October 2007
The hairwash over, our carer retreats to the kitchen to dry Mog's hair whilst I
7PM and both girls are settled, carer leaves. I sit down for 5 minutes at which point Mog makes her existence known. Going in to settle her and sort out her evening medications I become aware of a gentle aroma emanating from somewhere near the centre of her bed. Wonderful, the laxatives have worked at last. Less wonderful, we have no carer until 8AM and changing Mog in her brace takes two people, one to support her on her side with her knees in a safe position (i.e. not putting pressure on her recently broken hips), and the other to clean her up. As it turns out, a partial job can be carried out by just one person (myself), but only by contorting myself on the bed with Mog, using one of my knees to support her head and another to support her legs, whilst reaching over her body to mop her up - a position which makes it impossible to see what I am doing but thankfully one which Mog seems to find hysterically funny. Unfortunately her laughter causes her arms to wave wildly catching me a fair few blows to the face as I attempt to help her. I manage to sort out the worst of things but cannot possibly change the liner to her brace by myself without serious risk to her surgery sites and to my back. So I settle for packing the soggy bits out with cotton wool and one way liners, settle her on her back again and hobble off the bed and out of her room.
8PM and the next round of drugs for Mog, she also insists on a change of music, having suddenly decided The Laughing Policeman is the best song ever. Smashing.
9PM and the house is reasonably silent, Mog is snoring and Little Fish's Nippy is hissing gently, I go to bed.
Midnight and Little Fish's Nippy beeps. I go to investigate and find she has wrapped the air hose around her arm. Disentangling her I settle her back to sleep and head for my bed.
1AM and the next round of medication for Mog. She is awake and unhappy, I spend the next hour trying to settle her, lots of seizures and spasm. Finally a slug of diazepam takes effect and she settles back to sleep.
2AM and I crawl back into bed. Barely have I turned off the light when Little Fish's ventilator beeps again. This time she has managed to push the mask off her face and it is trying to breathe into her neck rather than her nose. Since she doesn't actually have a tracheostomy, this is fairly unsuccessful.
2.30 and it is beeping again, and continues to alarm every 5-15 minutes from then until 4.20, when I cave in and remove it, reasoning that Little Fish has had a good ten hours of decent breathing by this time and so the benefits of sleep for both of us probably outweigh the benefits of a constantly alarming ventilator.
4.30 crawl back into bed again where I am now too tired to sleep. The body is willing but the spirit is racing. Eventually drop off shortly before
7AM when the alarm goes, it's time for Mog's next round of medicines and time to start the day again.
Pass the coffee someone
It's official. My children will do anything for a bit of attention. And also, they are just plain weird.
Mog has been quite seriously unwell following her hip operation. Over the past few days she's been complaining of extra pain, as well as having increasing difficulty coughing and just breathing generally. On Thursday evening our social worker came to call, and tried hard not to be too obviously concerned in the face of my apparent lack of worry. Friday morning our carer came along, by this time Mog was wheezing and rattling like a sixty-a-day smoker. Decided it might be a good idea to call out the GP.
Mog kept this up all morning, only interrupted when she had her nebulizer. For some reason this entertains her hugely - scares Little Fish, unfortunately; for some reason she objects to her sister turning into a firebreathing dragon - but gives Mog fits of giggles which cause her to breathe more deeply and therefore to cough. All good stuff. If you can ignore the hysterics from the Little Fish cowering in the corner.
Our GP called in after her morning surgery and had a good listen to Mog's chest. Decided we needed hospital and IV antibiotics as the 3rd round of oral ones had clearly failed in their duties. Was worried enough to be calling for an ambulance, but managed to persuade her it would be easier if I drove. So, wheeze and rattle and crackle and load up the bus, pack for a weekend away, and off we go. Bumpetty bumpetty bump, hack hack, rattle and wheeze, all the way to the hospital.
Just before leaving I remember to phone to cancel our carers. I call the office and have the following conversation.
Me - Imi is unwell and we are back off to hospital, I need to cancel some of our care.
Office - OK, we'll cancel all your care for the weekend.
Me - but she might be discharged again over the weekend, how will I get our carers back?
Office, with a patronising air - You phone this number and leave a message.
Me - yes, but when will you get that message?
Office, slowly and calmly and extra deliberately patiently - On Monday morning
Me - Right, so how about the care I will need over the weekend if she is back home?
Office, light dawning - Ooohhhhhh...
It is decided that perhaps the carers could call me at home before they are due to arrive; if I answer the phone then they can assume we are at home and will need them. A simple solution which shouldn't have been difficult to arrange.
We have a wonderful shiny and new children's hospital. Sadly the A&E department is back in the old general hospital. Hospital parking being a perennial problem, it is necessary to part at the children's hospital, take a lift up 5 flights, walk the length of both hospitals, take a lift back down a level then walk back towards the children's hospital through a maze of ever-narrowing corridors. We'll take the ambulance next time.
Bump bump rattle rattle wheeze wheeze cough and gasp (and that was just me!) and the three of us arrive at reception. We are ushered through to a bay, and as Mog is hooked up to the monitors her breathing stills, the wheeze vanishes, her colour comes back and the waxy skin develops a beautifully healthy glow, and her "I'm a poor suffering child, pity me for my life is full of woe" expression is replaced by a huge flip-top-head grin. Monster. Sure enough, her SATs are fine, the first Dr can hear some rattles and crackles but says they aren't worrying, the 2nd Dr says there are no rattles at all and we should go home. Little Fish meanwhile has made herself comfortable on the bed and appears to be settled for life. She has studied Mog's rattle and wheeze and is now producing her own admirable imitation of the same. As an added refinement she appears to have developed the ability to cause her nasogastric tube to come back up through her nose simply by clenching her stomach, a trick guaranteed either to garner sympathy or cause passersby to retch mightily - either way a result so far as attention-getting is concerned!
So, the Dr manages to convince me that Mog is fit enough to go home (Mog herself indicates that she is all better now and is full of laughter), I manage to convince them that Little Fish is also fit enough to go home, and we leave the A&E department. Having previously arranged for my mother to collect Little Fish after work (on the theory Mog and I would be in overnight), I attempt to phone Mum to cancel her trip. Too late, she has already left. We then head back to reception to leave a message there, where I am greeted with the information that Mum has already been in, and the receptionist sent her on her way under the impression we had already left. So, back to the car, up the lift, along the corridor, further along the corridor, through the general hospital, through the children's hospital and who is this walking towards us but Mum, who is slightly confused, having been told not that we were being discharged but that a bed was being prepared for Mog on one of the wards at the children's hospital. Bizarre.
Anyway, we made a break for for freedom, managing to contact our next carer before we left and arranged for her to be waiting for us at home. Threw Mog into bed with the help of our carer, and Mum
I love my children, I really do, but if someone could show them some better ways of gaining attention I would be grateful.
PS. Little Fish has decided that she won't eat anything unless it has been mixed with lactulose. Now that is strange.
Thursday, 18 October 2007
This is a very simple soup. You need a butternut squash, an onion, a pear, a potato and seasonings to suit yourself. I like to add nutmeg and black pepper, but I forgot. It still tasted good.
First, cut your butternut squash in half and scoop out the seeds.
Next, roughly chop the onion and fry it up in a large dollop of butter.
Let those fry for a few minutes, and as they turn a beautiful pale gold, start chopping the squash.
Add the squash to the onion and stir it well until it's coated with the butter and starting to fry around the edges. Now cover the squash with boiling water and leave to simmer gently.
Chop the potato and pear and add them into the mix. I like to add a bit of stock to the mix, but I didn't have any this morning. I also like to add mixed herbs, and if you like a bit of a tang to your food then a dash of worcester sauce doesn't hurt either. Leave it to simmer away until the potato and squash are squashily cooked.
Now take your blender and whizz the soup up until it is smooth. Doesn't that look delicious?
Normally at this point I would add the nutmeg and black pepper, coarsely ground black pepper adds a bit of texture.
For a final extra touch stir in a spoonful of creme fraiche or sour cream just before serving and serve with fresh crusty bread. In this case I didn't have either so have improvised with cream cheese and a white malted loaf, not quite the same thing. Still tastes good though!
When I'm not serving this to friends I like to serve it with a couple of spoonfulls of cooked rice. But people tell me that's weird so I save that for when we're alone.
Hope you enjoy it
Friday, 12 October 2007
Thanks Trina and definitely sending that straight back to you! Trina is mother to Jophie, and any time I think Mog's giving me a health scare Jophie is usually giving Trina a similar scare but with even more added extras; Trina rolls with it all and somehow stays sane. Or perhaps we're two crazy ladies together and that's why we get on so well?
Who else would I send this to? Unfortunately the rest of my nominees are blogless, to my knowledge at least. Perhaps this'll motivate you to get started?
We'll start with Tina and her family. Tina I know will be embarrassed to be publicly outed like this but she is one of the nicest people I know. She feels that she hasn't been able to do very much to help us but she has been at the end of the phone, she's been a real prayer warrior, she managed to track down Trina for me when I was trapped offline, and most importantly of all, she has sent flowers, chocolates and balloons to cheer us all up when we got home! Thanks Tina!
Then there's Lou who I know will be trying to wring my neck for mentioning it. But Lou has flown to our rescue too many times to count over the past few weeks. She's taken a crash course in care of Mog and the Little Fish, and been promoted from Tia's friend who visits and thinks we're cute to substitute parent able to take full charge overnight and to go for walks in the park during the day. Believe me when I say taking a toddler to the park is not something Lou does every day of the week! Thank you so much Lou, for that and for all the medical explanations too.
Who else? So very many people have helped us out in so many different ways, I think I'll end this list with Becky who turned up last night just as the girls had settled down to sleep, handed me a bowl of sausage casserole and some fairy cakes, and went on her way again. Thanks Becky, your timing was perfect!
We arrived at the Children's Hospital, where the local orthopaedic hospital had borrowed a small side ward for the weekend. Settled ourselves in nicely, ordered a nice pureed diet for Mog, found some decent padded cot sides for the bed, explored the ward, met the doctors and did all the last minute pre-op checks, met our fellow patients and mixed nicely.
The following morning we had an embarrassed nurse come to us and inform us that the swabs taken three weeks previously had tested positive for MRSA and that we needed to be in strict isolation, no contact with other patients, no access to the playroom, no physical contact between hospital staff and Mog except with staff wearing aprons and gloves. No explanation as to why this had not been noticed before our admission, which would have given us time to clear the infection before coming into hospital in the first place, no explanation as to why it hadn't been picked up on arrival which would have stopped us coming into contact with the other patients on the ward. Grump.
So, Mog went off to theater, Little Fish and I went off to wait for a friend, and the nurses leapt into action to clear out the goldfish bowl isolation room in the middle of the ward, a task which kept them occupied for the next 4 hours. Not helped by the fact that the ward was only on loan, so none of the nursing staff knew where anything in the rest of the hospital was.
We spent the next few days in the goldfish bowl. Picture a sealed room in the center of a ward with windows all around and no curtains, the room itself the size of a hospital bed plus 2 foot all around. Lovely. Mog is however very comfortable, doing very well, mostly pleased with life and not in pain thanks to an epidural and a boatload of painkillers. She is however not impressed with the lack of food; for some reason the kitchen staff and medical staff are under the impression that she is unable to eat. On the one evening (Sunday) that they did finally remember us they completely ignored the menu we'd picked out for her and let other children on the ward eat that, then seemed suprised that I was unhappy with their offer of sandwiches and crisps. Ever pureed a packet of crisps? Physio visits daily and I ask how I am supposed to do Mog's daily chest physio without tipping her upside down and whilst she is encased in a brace. No helpful suggestions.
Monday morning and we are transferred to the orthopaedic hospital. To facilitate this, Mog's epidural is removed first thing as she needs to be free of it for 2 hours before having the shot of morphine which will see her comfortable for the transfer. Naturally this has not been written up on her drugs chart, and equally naturally it takes well over three hours for the paeds to come up to the ward to sort it out. Cue one sad Mog and one increasingly irate parent. Transfer eventually happened at lunch time, so another missed meal.
Anyway, eventually we arrive at the orthopaedic hospital where we are given a lovely private room with ensuite shower, freedom to explore the rest of the ward, a private play area outside for Little Fish, and staff who know where everything is. Mog herself is impressed with the kitchen staff, who bring up a nice meal and ask her about her preferences for the rest of the week. This hospital's physio is more familiar with post-op patients and has some good tips for chest physio, the nurses find a hair washing tray and Mog's immediate future starts looking rather more interesting...
...until Tuesday evening when she starts having a LOT of pain and spasm as the last bit of the epidural finally wears off. By the time that is sorted (with a large dose of diazepam) she is exhausted, and it is at this point we notice that she is desatting impressively, that she has developed a beautiful wheeze and rattle and other signs of respiratory distress, a fine fever, oh, and some wonderful seizures on top of that. Chest Xray reveals a nice bout of pneumonia as well as showing signs of damage from previous infections, the seizures and the spasms don't stop and eventually at 4AM we are transferred back to the children's hospital. Settling in on the neuro ward we now have plenty of staff who are familiar with seizures and spasms, but who are not used to orthopaedic patients; we have people who are not scared to treat the seizures but who are very unwilling to keep up with the large quantities of painkillers Mog needs in order to stay comfortable. Thankfully Mog's own neuro eventually visits and insists that she is given everything she needs for as long as she needs it. However, the hospital will not consider her coming home on morphine, so we have to wean her off that onto codeine. Meanwhile Mog remains on oxygen with lots of nebulisers, and seems to be really enjoying the nebs.
Slow and steady recovery not helped by overstretched nursing staff unable to give painkillers on time, and by the pharmacy which seems to insist on collecting all Mog's medications and her charts and keeping them downstairs for hours at a time despite her need for pain relief on a regular basis.
Four weeks to the day from when I spent the night sitting by my oldest daughter waiting for her to die I find myself standing by my middle daughter holding her head and willing her to keep breathing. I cannot lose a 2nd child so quickly after the first. Thankfully I don't have to, and the spasms subside, the seizures calm themselves, and the chest infection begins to improve. Mog is accidentally weaned from the oxygen (nurse forgot to hook her back up to it after a neb) but by the time this is noticed she has held her own for 4 hours, and we are eventually released into the care of our hospice where I can sleep for a bit and where both girls will be cared for on a one to one basis by loving experienced carers.
Finally we are allowed home, and I make the pleasing discovery that Mog is now on a drugs regime which has her taking medication at 10PM, midnight, 2, 4 and 6 AM. Marvellous. A quick look through the drugs chart reveals that some of these medications could be given at different times, and we settle for a compromise which gives me the potential at least for 5 consecutive hours asleep.
Mog finished her heavy duty antibiotics on Monday this week. On Tuesday she started looking a bit quiet again, and on Wednesday we started the next round of antibiotics for yet another chest infection (or a continuation of the original one). We are now pushing for access to nebulisers at home and this should be sorted for Monday, provided the post office stops striking.
Little Fish meanwhile continues her merry trail of devastation and chaos, the builder has not returned, I'm drowning in paperwork, my internet access seems to be limited to 2 hours 2ce a week and I still can't bury my oldest child.
But apart from that, we're doing fine. How are you?