Let's hear it for the nurses!

There's been a lot of bad press about nurses and nursing lately. It seems many people have tales to tell of inconsideration, neglect, rudeness, ignorance, and so on. I've not been backwards in coming forwards to talk about mistakes which have been made, but I thought maybe it was time to talk about some of the outstandingly good experiences we've had too.

I'm thinking about the first school nurse we had. Incredible to me now that I was willing to allow Miss Mog to start school aged just two. Still crying much of the time, still unable to tolerate being in her wheelchair for more than a few minutes, seizures, bottle feeding and seizures and refluxy vomiting.

Sue came out to to meet us at home before Mog started school. Together, we worked out a routine which we thought might work for us. A timetable for a child who wouldn't be timetabled, a nursing care plan for a child who at the time had no effective communication other than screaming or throwing up. And somehow, she gave me the confidence I needed to send Mog in.

True, we'd been joining in with swimming lessons, and physio groups, and so it wasn't a totally strange environment. But we were so entangled, Mog and I; she came where I went, and I stayed where she went. So to leave her in school, even if just for a couple of hours at a time, was a very big thing. And Sue made it seem as if it would all be OK.

Was it Sue or the next school nurse who got to deal with tube city, when Mog and one of her nursery friends decided both at the same time that drinking was for wimps, and turned up at school within a week or so of each other with nasogastric tubes? Mog kept hers clipped into her hair ribbons, her friend wore his clipped to his glasses. And the school nurse (and nursery class staff) kept each other sane. Our current school  nurse has continued the tradition. We like to keep her on her toes; Mog tends to add new medical complications or treatments over the school holidays, and ideally she times these in order to force our school nurse to redo all the training she's just spend the first day of term sorting.


We met our current community children's nurse shortly after Mog's NG tube had been swapped for a PEG. I think it's reasonable to say that all of us had difficulty in adjusting to Mog's fundoplication - this surgery removed her ability to vomit which was excellent, but also took away her ability to burp. We're used to that now; burping through a tube takes seconds. But Mog confused the medics for a while. When Mog needs to burp, she starts coughing and pouring saliva. Now the natural thing to do when you see a child apparently drowning is to sit them up straight. Unfortunately, to burp Mog most effectively, she needs to lie down flat.

Our CCN at the time was handing over to our new CCN, and introducing her to our family. Miss Mog was propped at one end of the settee, and we had just had a conversation about her burpring problems. I could see the new CCN's eyes taking on a certain "yes dear" expression as I attempted to explain the bits which made no sense to anyone other than Mog. And then Mog started choking, and gave us a proper demonstration. We showed what happens if you do the things we were supposed to be trying (i.e. not a lot, except she gets worse). And then I flipped her on her back, popped a syringe on the end of the PEG, and stood well back. It was a particularly impressive burp; the splashmarks are still on the wall eight years later. And that's why the book cases are where they are.

And to her lasting credit, our new CCN took on what we were saying instantly, and has been one of our strongest advocates ever since. Equipment supplies? She's our woman. Sounding board for new complications? She's our woman. Trying to unpick what might be going on, working out who to contact and in what order? That'll be our CCN. Visiting in hospital, sorting out discharges as soon as possible, training myself and others on whatever new thing we need to be doing, going into tLP's school to make them fully aware of all her needs? That's her.

I know I can leave a message and she'll get back to me as soon as possible. I know that she might not have all the answers, but that she will know where to go to get them. I know that she knows what's possible as well as what's ideal, and  I know that she can keep me grounded in reality when necessary!

She has taken on a lead role in our multidisciplinary meetings, and I love that she does not confine herself to what others may think of as the nursing role. She understands as well as we do that the girls' complex health needs permeate the whole of their lives, and so she is there too, when necessary. tLP started at Brownies, and I was able to leave her straight away, because one of the Brownie Guiders had already been trained up by M.

She does her best to simplify our complicated lives; for example checking up on test results and then arranging for our GP to prescribe the necessary antibiotics, cutting out as many steps as possible in the dance we otherwise take from believing something is wrong to having the means to treat it.


And then there's K, the Nurse Consultant at Helen House. K has brought hospice care out of Helen House and into our own homes. When Mog was poorly, and I couldn't get her off CPAP one morning, it was was K who was on the phone and able to do a home visit. K with her stethoscope has visited regularly during illnesses, listening to chests and listening to me, spending the time I need to sort out what's going on and what I need.

K has come with us to extremely challenging hospital appointments, and helped out by asking the questions I would forget to ask, asking her own questions coming from her own greater understanding of the procedures involved, and crucially, remembering the answers for me once we've left. She's visited in hospital when things have been going well, and visited when things haven't been going well.

K and Dr E have together found solutions for Mog which involve keeping her out of hospital. From detailed plans for the future, to provision of home oxygen, to Mog's newest medication - buccal buscopan - she's been able to put her palliative care expertise to work, looking at managing symptoms and improving the quality of both girls' lives. Which always improves my own life too. So many of our doctors are looking at longer term outcomes. K and the Helen House team look at making today better, and that's led to a big increase in Mog's quality of life.

K it was who arranged for tLP to go into Helen House for symptom control at a point when we were waiting for neurosurgery, and K it is who, together with M, arranged for Mog to be kept safe and well during tLP's recent surgeries. 

And we mustn't forget our respite nurses who give me three hours' sanity time in the middle of the school holidays, when the girls are ill or have had surgery. Our specialist nurses who keep bladders and bowels and other unglamourous bits and pieces functioning. The ward nurses who have managed little kindnesses like sourcing hot drinks in the middle of the night on a ward which bans them, who have known what to say as the doors close on leaving the anaesthetic room, who have remembered siblings and made a fuss of them during visits, and who have prepared themselves for difficult tasks by collaring the play workers.

So let's hear it for our nurses!

Tia

And a final sentence typed by the Little Princess herself:
I thingk re ns re good.

What's in a word?

Or, when is an ACE not an ACE?

An ACE - Antegrade Continence Enema, is a clever little thing. You take the appendix, bring it to the surface, and hey presto! you have a little hole you can insert a catheter into, you can pour water into that, and flush everything in the large bowel out into the wider world (or, preferably, into the bowl of the toilet you are sitting on at the time). No more leaking (once you get the flush right), no more constipation, just a daily bowel washout and go on your way - no pads, no nappies, no worries.

Or, an ACE - Antegrade Continence Enema, is the act of performing a bowel washout from the top down, through an artificially created opening into the top of the large bowel.

Spot the difference?

The first is a very specific, somewhat complex surgical procedure which will leave you with a small but ideally self-sealing hole in your side. This is what was described to us in our pre-op appointments; this is what tLP's surgeon has been mentioning for years, and what we have been waiting for her to be big enough to do.

The second merely requires a surgical opening into the bowel, when may be held open by a variety of different things. A Cecostomy, for example, which, as it has no formed track will probably need some kind of a button holding it into place. This is the procedure the surgeon who actually carried out the operation chose to perform.

Note for the future: always meet the operating surgeon before surgery, even if you are sure the three hour visit with the nurse was an adequate preparation. Or wait for the return of your more familiar surgeon.

Is it going to be a problem? Honestly, right now, I don't know. The alternative surgeon chose to use the appendix to create the Mitrofanoff (an equally clever bit of surgery which joins the tummy button to the bladder so an individual can intermittently catheterise themselves whilst remaining seated in a wheelchair). Our original surgeon would have used a small segment of bowel. Replacement surgeon claims using the appendix makes for a better channel and a more reliable Mitrofanoff. It had better.

In the meantime, we are now faced with the prospect of having two identical buttons, one either side of a small child's stomach. One will be for gastrostomy feeds; the other for bowel washouts. It bothers me that there will be the potential for mixing them up, especially by unfamiliar carers. The surgeon claims the worst that can happen is that the child will get bad diarrhoea. It bothers me that we will now have another button which will need changing every few months, potentially not as often as the gastrostomy, but still a traumatic experience for a child who dislikes medical interventions. And, since the skin around the gastrostomy has never properly healed but continues to weep and ooze and occasionally overgranulate, it bothers me big time that the same will happen to the cecostomy button, and that she will leak faeces on one side of her stomach whilst leaking gastric juices on the other. I suppose that will at least make it easier to see which is which, but it's not exactly the most pleasant of options.

We are investigating options. It is possible that a revision may be possible, at some point in the future, creating some kind of tract which will hold itself open. It is possible that we could use some other kind of button, one which would a) hopefully not irritate her skin as much as the gastrostomy tube does, and b) be incompatible with the extension tubes for the button she has to avoid error. It's also possible that the mild leakage she is already experiencing will get worse, and that she will need to be re-operated on in order to fix it. Oh, or that it will need moving as and when her scoliosis worsens. Which it will, since there is no way she will be fit for spinal surgery for a long time now. The wound she has, whilst thankfully clean and healing nicely, will need daily packing and careful watching. It "may" be healed in time for her to start swimming lessons with school in June. It may require further surgery at a later date.

Today we went back to the hospital for a sedated ultrasound, to check out those pockets of fluid under the skin. It didn't happen - my fault entirely this time. I let her have breakfast. It didn't occur to me that midazolam must be given on an empty stomach; I've given it to Miss Mog many times without even pausing her continuous feed, and tLP had it twice last week without skipping a meal. Of course, she wasn't eating last week, so it wasn't quite as relevant...

Still, we got to lose one of the catheters, leaving just the two holding the Mitrofanoff and the Not-An-ACE open stitched in place. We have a detailed timetable for our next few weeks; when we can start building up time off free drainage, what to do in a different kind of emergency, and dates for further tube removal, taking out the stent which got left behind in surgery, more checking up on the wound healing, and other bits and pieces. And I got my ancient but much loved cardigan back from Tom's Ward; always good.

And, we got to meet the surgeon. I can't say I'm happy with what's happened - she shouldn't have to go back and have a stent removed at a later date, she shouldn't have a great gaping wound in her abdomen, and the difference between what each surgeon was planning to do should have been made clearer. But I do believe he's committed to making it right for tLP now, he is as upset as we are over the complications she has had, and I think he understands why I am unhappy.

And at the very bottom line, the cecostomy is working. A few minor issues (mainly due to being on strong antibiotics for considerably longer than expected) which we expect to be self resolving. But she is already free-er than she was before, with a slimmer profile, and has swapped some extremely undignified and time consuming grotty nightly programmes for twenty minutes in the morning. Which, handily, coincides with Benjamin Kitten's need for half an hour of someone bouncing his toys for him to chase. We'll work on the whole privacy thing at a later date.

Tia

The Hospital Mum

People; I have finally succumbed.

Tonight, I borrowed the key to the parents' flat upstairs, and ran myself a bath. A long, hot, deep, scented and bubbly soak, away from the beeps and yells of the ward. Bliss. But that, in itself, does not make me the hospital Mum.

I soaked for long enough that the bathroom lights went out, forcing me out of my comforting cocoon, and into an inelegant bubble coated dance across the floor, to reactivate the motion detector. And that doesn't make me the Hospital Mum either, although I'm fervently hoping the sensor us only linked to lights and not to any kind of camera.

I dunked my clothes in the bathtub, as you do, to freshen them up for a slightly longer than the slightly longer than planned stay we seem to be heading towards. And that doesn't make me the Hospital Mum; it makes me a proud Eco warrior, doing my bit for the environment by reusing the hot water. That, or it makes me someone who forgot to buy soap powder yet again.

And then I looked at the wet clothes, and I swapped the countless white fluffy towels (thank you, housekeeping) for my pyjamas, and I realised that I was not at home but a long walk away from my child and my bed. And I wrapped another fluffy towel around my dripping hair, and shuffled myself out of the bathroom, away from the parents' flat, and over towards the lifts. And that, my friends, is when I became the Hospital Mum the woman who has been here long enough to walk around I pyjamas in public, without the somewhat dubious dignity of a wristband or obvious injury. I tried to kid myself that the baggy cardigan hid what lay beneath, but there's no hiding purple pyjama trousers, especially when matched with brown owl socks. And of course the dripping hair in a towel was a bit of a giveaway.

The walk of shame was reinforced by the number of people who took one look and decided to risk the horrors of the stairwell rather than being trapped in a lift with me. My somewhat tattered dignity mentally wrapped around me, I walked towards the ward and buzzed, hoping someone at the nurse's station would let me in before too much time had passed.

Finally, thankfully, I was back on the ward. And greeted with the message "Oh, the doctors were looking for you. They've gone now. I don't know what they wanted".

But this, this is what makes me the Hospital Mum; the bath was totally worth it.

Tia

Because it is, ultimately, all about me.

A new kitten is a great way to occupy a week or two. Throw in a poorly child; nothing majorly wrong but just "Not Right", and there's a beautiful distraction from the fairly major surgery planned for child number two.

But there does come a time when, no matter how cute the kitten, the headline news on the radio is that patients admitted to hospital on a Sunday are 16% more likely to die than if they are admitted on a Wednesday, including planned admissions, and the "la la la I'm busy, can't hear you" stops working, and you realise you are in fact heading that way in just two days' time (and yes, going in on the Sunday). It is, however, significantly better than the outlook this morning, when I misheard 16% for 60, and was considering calling the whole thing off.

I could drive myself mad wondering whether there really will be a statistically significant difference for the Little Princess between our Sunday admission and our originally planned Monday admission, but ultimately it's out of my hands, and I either trust the staff (and God) or I don't. We're going in.

But, in the meantime, if the sight of a very confused little kitten trying to suckle an equally confused neutered adult cat isn't distracting enough, then I have a lovely bag of yumminess to explore.

It occurred to me, in one of those pre-dawn-ugh-I'm-not-awake-back-off-world moments that there may well be a considerable amount of down time over the next week. We'll be aiming to keep the Little Princess nicely comfortable, and that should hopefully mean a fair bit of her being asleep. And then of course there's the op itself on Monday when I'm absolutely certain she'll be unconscious and there won't be a great deal for me to do, since for some reason they don't seem to like parents to be involved in the surgery.

And, with a new kitten in the house, crafty type stuff is having to be on the back seat - pretty photos aside, cats and knitting just aren't a natural combination. Hmm, a cat free week; what can I do with that? Legitimate knitting googling; hurrah!

I found myself here (warning: link could be hazardous to anyone keen on rather splendid wool). Free patterns, marvellous! Free patterns for some extremely delicious fair trade hand dyed gorgeously textured ouchily pricey wool. Hey, it's Fair Trade - buying it is a Good Thing, yes?

Just one problem; hospital admission on Sunday, and today is Friday. Our local wool shop doesn't stock the right wool for the pattern I've chosen (although it does stock the silk and lace yarns, check them out!). I call an internet supplier. No problem; they can arrange a delivery for Saturday. Small problem; they don't have the colours I want in stock. I take a look at another site and decide I don't actually have time to arrange a second mortgage. I check a third; equally ouch. I call another supplier, Yarn Box. Handily, Nicola is about to sort out the day's post, and will pick and pack my wools as she does. Even more handily, Yarn Box turns out to be based very locally, and she will drop the yarn round herself - now that's definitely service! And here it is:

Pattern downloaded and printed, needles ready and waiting, and it is only the kitten lying on my lap playing with my hair which is preventing me from making a start already. Roll on Monday; I'm almost looking forwards to it now!

Tia

Bump!

This letter arrived for Miss Mog the other day.
It's come from the same hospital which has repeatedly sent out letters cancelling an appointment and rearranging it for exactly the same time and date, so when I read the new appointment I initially thought this was the same thing. And then I checked the original date again, and realised that no, this was a genuine shift of date and time,

So why, then, did this appointment time ring so many bells?

All was made very clear when I opened the Little Princess' post
Sorry, tLP; your sister's stolen your appointment.

Shame; for a brief moment it appeared that I would have two children having appointments on the same day with the same consultant. It was very nearly joined up thinking...

Tia

Sign 26137 that you may have a medically complex child

When you go to the Theatre Direct Admissions Unit, and the day's patients' notes are all set out neatly on the top of the nursing station.
And you can tell, instantly, what number you're going to be, because your child's notes are not just a neat pink folder but a giant, sellotaped together because it's falling apart because it is so heavy green and white box full of big fat pink folders.

No surgery today, incidentally, just sorting through photos. No surgery next month either, which is nice, ish - been delayed until Feb but should still be over by Easter.

On a not entirely unrelated note, if giving your child a suppository shortly before a carer is due to come and give her a lovely shower, it is probably best to check said carer is actually coming and is not in fact at home making mince pies having completely forgotten about the shower.

On the plus side; I now have no need to share the Chocolate Nutella Sea Salt Fudge I made earlier. Although I'm not sure that a whole batch is necessarily the best thing. I would share it with the girls, but the Little Princess turned her nose up earlier, preferring broccoli. These are the times which remind me she is adopted.

Tia

Princess Proclamations

She - "Hello my fatty Mummy!"
Me - "That's not a very nice thing to say."
She - "I know Mummy, I'm sorry, but..."
Me, thinking, "Ouch!"

Later,

She - "Mummy, Mog and I we was thinking. You are very beautiful and precious and lovely and I love you and can I please have some sweeties now please?"

Later still

"ARGH Mummy you are a STANK and a STANK and you are very stanky and stanky and GRRRRRRRRRRR and I hate you and this is a STANK and you are a stanky stanky stanky HEY MUMMY WHY are you turning off CBeebies?"

I like stank as an insult. It's her current favourite, and it has force. It's a great word to shout. And it has the joy of being a word which isn't going to bother me at all, rendering most of her current tantrums fairly reactionless. Apart from turning into the meany Mummy who will turn off the television that is.

Meanwhile Miss Mog decided today was a staying in bed day. A "take my duvet off and I'll go blue all over" kind of a day. Until I told her we needed to go and visit her friend in hospital. At which point her fingernails pinked up, her cheeks went from mauve to bright red, and her temperature picked up from 35 to 37. I'm reasonably sure she doesn't actually have that much control over it, but it was still impressive.

We got to hospital to find her friend fast asleep having had a rough night. So sat down quietly beside him. Little Princess was beautifully silent, voice hushed, finding quiet things to do. Mog decided he needed to wake up and shouted and kicked and sang and sang until he did eventually wake with a cry and a spasm and a sob. At which point she silenced herself until we sang him calm again and he settled into sleep. And then she decided he needed waking up again...we went for coffee and she giggled all the way down in the lift. Toad.

A more peaceful visit to him again, and we left him in the capable hands of one of his carers. Back into the bus and the Little Princess broke her silence. "Mummy, if you, if you, if you don't give me some chicken for my tea then I won't have any chicken for my tea." Very true, child. It's been that kind of a day.

Tia

Walkabout.

It all seemed like a good plan at the time. The bus needed a new back door, thanks to losing an altercation with a gate post. The diary was actually empty for two days, so sending it to the garage wouldn't be too much of an inconvenience.

It started well. Despite having no carer, the girls and I were up and dressed in time for Mog's school bus. The Little Princess and I loaded ourselves into our bus, after a brief pause to empty it of tent, camping equipment, oxygen, McDonald's Happy Meal boxes, etc. We drove to the garage, waving to Mog as her school is opposite the garage, and dropped the bus off. One very happy Little Princess and I walked into town to see if her new chair would fit onto the local buses, riding two stops before reversing off the bus to a chorus of cheers from thankfully good-natured passengers and driver. Hurrah.

We walk the rest of the way home, have a brief pause before setting off to walk to school. I hand tLP over to her TA, And my phone rings. It is Mog's school; Mog isn't well, will I go and take a look please? I walk back past our house and over to Mog's school, where one very happy grinny Mog is waiting to be taken home. We stay for a quick harness change at the wheelchair clinic, then grab her gear and I walk her home.

As I leave Mog's school, the phone rings. tLP is not well, will I come and take a look?

One brisk walk later, we are home, and thankfully tLP's TA agrees to walk her home to meet us.

And now I have at home one ridiculously well Mog, but a Mog whose suction pump is now plugged into the charger I had forgotten to send to school. Bad mother alert. And I have one Little Princess who is sweating buckets, in a lot of pain, and who just wants to lie on my lap and not move at all.

Lots of pain relief, we spend a couple of hours sorting out possible constipation issues, and as I try to work out the logistics of how to get both girls to hospital without our bus (which boils down to whose wheelchair should we leave behind and can I cram them both into a buggy somehow?), she settles a little and I decide it can wait for a while.

One horrible night, which she doesn't appear to remember, and one girl waking this morning alert and bright eyed, not needing any of the pain meds she has been living on for the past few days, and drawing a beautiful picture. And finding some scissors and cutting chunks out of her hair, but I'm trying to forget that bit.

But what has been happening just at night has now happened during the day (i.e. too much pain to cope with), so time to phone the hospital. Who, as expected, say to bring her in for a review. A quick warning call to Mog's school with an advance apology that any emergencies will mean calling an ambulance as I can't get there. A quick run down the list of people who might be able to meet Mog after school if necessary (note to self: list entirely too short, must cultivate non-working friends). And a long bus trip with a very happy Little Princess.

One happy and pain free LP up on the ward, examined and appears fine, but let's do a quick CT scan just in case. One fine CT scan and we are back to no problem showing. Which is not unexpected, since she is currently demonstrating handbrake turns in the corridor and building lego cities in the playroom. One prescription for slightly stronger pain relief, but only to be given as a one off, as it will mask potential problems. And then run for the bus, cancel the care and race Mog home.

So, we are home. Which is good news. Except that it's not, not really. Our current theory is that this is not to do with the operation, but is instead a sign that her VP Shunt is now working intermittently. It's still working too well to need changing, which is good. And it might sort itself out, which would be great. But it might very well not. And so we watch and wait and see. And have to bring her in next time the pain gets unbearable. Which sounds sensible, except that this seems to happen at 2AM. And whilst the garage have just returned the bus, I still don't relish the idea of getting both girls up in the middle of the night and transporting they and all their equipment, possibly repeatedly, until she has an episode which lasts long enough to be checked properly.

Oh, and did I mention that we got off the bus and she started crying, and has been complaining ever since that her head is sore. Until I say we'll have to go back to hospital, at which point she insists it is all better. And now I genuinely have no idea whether it is really sore, but she is able to hide it completely from the doctors, or whether it is all a big ploy for sympathy and to keep me by her side, and isn't anything like as bad as she is making out. Both are possibilities. I am tired.

Tia

War wound

It's good to know you can have surgery which isn't going to leave great visible scars. It's even better to know you can have surgery and bounce back as quickly as the Little Princess seems to be.

Lots of visitors today. A better appetite, and a brief hello from big sister Mog, moving between her respites.

Leaving tLP with Grannie and a plate of chocolate brownies (which they didn't save for me), I took Mog to her new respite place. Where she was pleased to see a school friend, and I was a little surprised to see one of my first foslings. He's grown a bit since he was the little boy I took camping in the snow one colder than planned church weekend.

Mog was very pleased to stay, and as I left, was nagging her carer to take her into the sensory room. She decided communication was going to be important, so made the effort to demonstrate her yes and no responses (plus a few minor seizures) whilst I was around to interpret. Clever kid.

Nothing major to report medically; side effects of the morphine have very definitely worn off, femoral line dressing has been changed successfully, temperature staying nicely stable and head pain being mostly controlled. Waves of pain and exhaustion seem to roll over her at random intervals, but between them she's still thrilled that the line is our of her hand.

Small one interrupting this post to say "can you help me to turn over, Mumma, I need to face you because you are a beautiful lady." how do you argue with that, even if you have just been mean and miserable and told her to settle down and stop talking?

Tia

Day 4 (I think)

Losing track of time a bit here.

A really good day today - look no tube! Cannula out and morphine replaced with ibuprofen. In her own words "Yay! I got my hand back!"

We had to celebrate both that and the third clear MRSA swab in a row by taking a tour of the hospital this afternoon; highlight being watching an ambulance restock and drive off.

A short visit to the schoolroom this morning, whilst Mummy made use of the decontamination chamber up in RMH. No showers for the Princess until the femoral line comes out, but maybe that won't be too long now.

Most favourite object this wonderful blue book, holding artwork and messages from all her classmates. Naming them all is great distraction therapy, and the nurses are all very very impressed with the beautiful drawings and lovely free writing.

All on course to get over to Helen House on Monday we hope.
Tia

Day 3

A mixed day.

A little leak overnight so lots of sitting up needing to be done during the day to try to keep things draining nicely. And a small girl with a wound painted in Friar's Balsam to seal the wound.

So, a morning in bed doing lots of painting with Grannie and the play lady, and a Mummy with license to grab coffee.

And then an hour with a majorly bloated tummy, a little bowel massage producing a lot of tummy bubbles and then a fairly messy vomit.

So lots of rest in the afternoon; stories with the play lady whilst Mummy went off to be tenderised and basted in orange, lavender and rosemary oils. An effect which produced beautifully relaxed shoulders until I had to brace the Little Princess over a bedpan later on.

Up in her chair for a couple of hours including an escape to buy maltesers and another colouring book, and a brief visit to the outdoor play area before a different kind of leak stopped play.

A rather moody girl, determined that she is not poorly and therefore should be allowed to go home. But with minimal appetite, the need for lots of downtime, and an absolute refusal to see any visitors today except Grannie.

Oh, and an ear infection to add into the mix; some predictable but painful side effects from the morphine, and a long night last night with a faulty humidifier.

Everyone still very pleased with her progress through and she is delighted not to need stickies on her chest tonight, just a bog standard Sats monitor on her toe.

Aromatherapy massage aside, I have so far collected the majority of possible bodily fluids on my comfortable trousers; I'm considering walking myself through a carwash somewhere for speed.
Tia

Beautiful

Big huge busy-ness over the past few days. Tediously complicated stuff, poorly children, and generally a bit too much of life.

And then I went to visit Mog at the hospice (where she is, for the second time in a month, being nursed through a chest infection), and was handed a CD. They have a photographer who comes and gives her time, taking photos like these and giving them to the parents.

And somehow the grimness of the underground rooms in the hospital and the worry of two under-par children in two separate places was swapped for an appreciation of how wonderful they are.




Don't you agree?
Tia

Too much of a good thing?

We had a lovely few days at Helen House last week. Both girls on top form. A playmate for Little Fish on hand to keep her busy, and staff really getting to know Mog's communication. Great. Some school, some music therapy, some physic, a visit from friends and from our own OT. And a giant parcel from Disney to unwrap and explore, the icing on the cake.

We all had a really lovely, properly relaxing time, and I even managed to finish the jumper I was knitting just before kicking out time. Perfect.

Mog had a bit of a cold, nothing major but plenty of snuffles. Chest checked and all clear, so with no further excuses for delay we headed back to home and reality again. Has to be done occasionally.

Home for just one hour and Mog decided to celebrate by throwing a temperature and dropping her SATs. Paracetamol and suction, and problem solved. Ish. Decent morning yesterday but wobbly enough to miss school. An interesting afternoon, debated ambulance at one point but settled for GP - and of course Mog was flattered by all the attention, but absolutely find at the surgery. Antibiotics prescribed anyway, mainly to humour me, but chest still fine.

A somewhat dodgy night, SATs on the low side considering she was on CPAP. But up in the morning and snotty and achey, but otherwise ok.

Into her wheelchair and off to the Orthopaedic hospital for a wheelchair fix. Nice new footplates, an elasticated wrist strap for going through doorways without leaving knuckly flesh on the frames, and all fine.

We walk out of the wheelchair clinic and she decides to start dropping her sats again. So we go and have a cup of coffee (I drink, she sniffs) whilst she sorts herself out. 20 minutes without desatting and I'll be happy to drive her 20 minutes home.

She does not manage this. We head for the children's department and beg for someone who might listen to a chest or offer advice. We find an Anne, who escorts us through to the otherwise deserted children's ward, where we borrow some oxygen. A brings tea. We like this. She keeps us company and listens to my whitterings until a physic arrives, listens, and hmmms. Soon we are joined by a dr, who also listens and hmmms and joins in the debate.

I explain why we don't want to go to hospital, whilst realising the NOC is not the ideal environment either. Dr calls Helen House, who have friendly doctor, an empty bed and a spare nurse.

We fiddle around until Mog is as stable as she's going to get, then load up for the drive. It's five minutes. Mog manages to set her alarms off at least once in those five minutes.

Mog is deeply pleased to be back at HH and greets everyone with a big smile (and an antibiotic induced hazardous waste cloud), before submitting to being examined. The hmmms turn into a nice right sided lower lobe infection, her speciality.

I abandon her in favour of sitting in rush hour traffic for the next hour and a bit. Rush in, thank Grannie, put Little Fish in bed, pack a suitcase and rush back out again with meds and other essentials.

Back to HH where a very tired Mog is pleased to go to bed. I blame the staff from last week myself; she clearly had too much fun and worked out how to get back again! LF is most envious and split between worry over her sister and "'ow is she gettin' on?" and "Ohhhh! It's not fair, I want to go back too. Ehuh, ehuh, I am sick too now." Nice try...

Tia

A Mog Merry-go-round

Start the day in a good mood, hurrah.

Watch your sister go off on the school bus, humph.

Realise you're going to hospital for an appointment, hurrah.

Sit in your wheelchair seeing less and less and less as the ridiculous hat your mother made you wear slips slowly down over your eyes before finally coming to rest on your chin, humph.

Arrive at hospital, and see your favourite receptionist who waves you away into a corner, hurrah. See your friend who has moved away but has an appointment at the same time as you, double hurrah. Hear both mothers make plans for coffee post appointments, triple hurrah and a big body kick.

Realise your appointment is now 90 minutes late, humph. And that you are seeing the registrar, not the consultant who brings a sparkle to your eyes, double humph. See the consultant at the end of the appointment, hurrah.

Finish your appointment at the same time as your friend, whose appointment has been similaraly delayed, hurrah. But discover you have to go and have bloods drawn, and your friend has to go off for a different test, humph.

Finish both tests at the same time, and hear the mothers plan for lunch instead of coffee. Hurrah. Wait at the lift, watch in disbelief as most people get out of the lift and then instead of waiting for us to get in, the remaining couple of people press the door closed button and continue the downwards journey. Humph. Watch the lift stop and flash an "Under Maintenance" message. Decide it might be a hurrah as you weren't in it at the time.

Remember the other lifts, and escape to the coffee shop. Eat a chocolate muffin and laugh lots. Hurrah. See the gastrostomy nurse, meaning the only nurse you missed this visit was respiratory.

Get back in the bus and drive home, wince as your mother knocks your gastrostomy button. Wince more when she decides you've been doing too much of that lately, and so whips it out to swap it for a new one. And wince even more when she totally fails to get the new one in. Humph.

Laugh as you get to listen to Norah Jones whilst your Mum calls for reinforcements. Laugh more when the reinforcements arrive, and even more when you are full of diazepam and pain meds, given through the temporary thinner tube. Hurrah.

Wince really quite a lot, despite the diazepam and painkillers as Mum and the nurse try hard to get the new button in. And fail. Humph.

Watch your Mum pack for a hospital visit, and then panic slightly when she remembers your sister needs to go to Rainbows. Oops. Watch Mum heave a sigh of relief when the nurse calls the gastrostomy nurse - the one you'd just seen at the hospital - and agrees on a plan of action which involves doing nothing more tonight. Gear up for Rainbows. Hurrah.

But I'm predicting a big humph when the nurse comes back tomorrow morning to have another go, and an even bigger one if we still can't do it and end up on the day ward.

Tia

Babysitting

Too many years ago, I was in a chatroom with a woman who shared my interest in the world of adoption and children with disabilities. We had our copies of the latest adoption magazines open on our laps as we chatted online. And I pointed out a child who fit this family's "We'd only consider adopting again if" criteria.

That child did not end up joining their family. Instead the most beautiful precious little girl became their youngest daughter, and they very graciously asked me to be her Godmother. We didn't live so very far apart at the time; it was a relatively simple train and ferry trip to meet up, and we managed the occasional lunch together over the years, as well as far too many hours spent chatting online.

And then the family moved, and two hours became four, and meeting up was limited to Baptisms and Dedications and special Birthdays. And my Godmotherly duties have of necessity been pretty much limited to whatever I can do from a distance.

I have been spoilt, living here. The vast majority of the girls' medical needs are met through just two hospitals, and both of those hospitals are less than ten miles from my door (and only a mile apart). The girls' schools are both less than a mile from my door. And so I very rarely need to travel. We travel as a family, or the girls go to school and I either stay home or potter about fairly locally.

Last month I had to break out of my comfort zone to visit a friend who was stuck in a London hospital for a few weeks. And I drove my van to the long stay carpark, and I caught a train, and I debated a tube but opted for a taxi, and I gained a fresh sense of awe for anyone who manages to commute on a regular basis. And we had a good visit, and I did the journey in reverse, and got home sweaty and smelly and exhausted and determined never to do that again.

But - I got home, and the girls had survived my absence, and the world didn't fall apart because I was more than thirty minutes away. So, when my friend told me she was coming into London for a hospital appointment, how could I miss the opportunity to meet up?

The trains were running very late. Which actually worked in my favour; instead of the train I'd planned to catch (which was cancelled) I caught a train three minutes earlier which was running ninety minutes late (confused yet? So were many of the passengers. Those who weren't irate). And so instead of meeting my friends at the hospital, we met an hour earlier at the train station.
And I got to babysit whilst the rest of them had their appointment. And I think Evie enjoyed it too!
And then of course I had to do the journey in reverse, and of course the appointments were running a little late meaning I had to abandon my Goddaughter with her mother who was in the middle of an appointment which involved, amongst other things, sitting in a pitch black room for half an hour. But I only got mildly lost in Islington, and only did one loop the loop in the tube station, and once again managed to walk into the station and onto a train, getting back a few minutes before my own sitter ran out.

And I'm stuck again with wondering how on Earth people manage this commute every day? I'm sure there are some jobs which can only be done in London, and I'm pretty sure if I had to do one of those jobs I probably wouldn't want to be living there at the same time. But then again so many of my friends do - how? And why? Thankful once again for my two girls and the ability to stay home with them. In a home which is currently constantly scented with apples and cinnamon, as I attempt to puree my own bodyweight in the apples from our little tree in the garden. And which will smell so much sweeter when I finally empty the last huge box and get rid of the last overly rotten ones. And sweeter yet once I scrub London off my skin and out of my clothes. Something I shall do just as soon as I've had one last look at that beautiful smile; a small girl determined not to share her doll with anyone.
Tia

Poorly boys

Your prayers please. For one small boy who is currently in a hospital far from home, with his family but without much of an idea about what is wrong. Something is obviously very not right but no answers yet.

And for one bigger boy, one young man in fact, currently fighting hard against an overwhelming pneumonia. And for his family who were told he was doing better, and now find he is doing much worse.

Both boys have multiple disabilities, but these illnesses are not normal for either of them.

Tia

Bracing ourselves

So, how exactly do you sell the idea of a spinal brace to a five year old? "We hope it might mean you won't need surgery on your back until you're a bit older" doesn't really cut it, when the short term consequences are that you're going to find it impossible to bend, much harder to self-propel, it's going to be hot and sweaty and probably won't work anyway. "It's red like your school uniform" doesn't really help much, especially in the school holidays. And "Your big sister had one just like it" isn't terribly reassuring when you don't really remember your big sister all that well any more.

"We're going to go and do some nice things and then have lunch in a dinner shop before we go to hospital to pick up your brace" works to get her out of the front door at least; always useful when the cleaner is trying desperately to clean around a small, tantrum throwing tornado of a child.

Looking at children's clothing and just mentioning that the brace will be big, and that she'll probably need new T-shirts and maybe some new jumpers too proves to be quite the incentive, especially when actually buying them is banned until the brace is on.

And, by the time lunch was ordered at the not especially nice dinner shop but the one which does sausage egg and chips, which is what the brace-wearer-to-be fancied, the brace was a fairly exciting prospect. Job done.

And then the phone rang. "Sorry, Mr Orthotist is off sick today, so your appointment has been cancelled." It's rearranged for next week, but that means missing an afternoon at school, and it means we missed out on meeting up with friends today for no reason whatsoever.

Grump.

Tia

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.

Tia

Reconciled

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.

Tia

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.

Night,
Tia