Saturday, 25 February 2012
Because this is where Mog has been all day
and she has no interest in moving.
It's not a fancy, custom moulded P-pod, just the standard version. I was hugely skeptical; despite the photo it's actually quite a deep bucket seat, and she tends to prefer a wide angle at her hips. But it was dropped off on Friday morning for us to try, I plonked Mog into it after school on Friday, and she has stayed there all her waking hours ever since.
The Little Princess is unimpressed. She is the one who has had the surgery, she is the one who keeps getting lovely cards and parcels in the post; everything nice should be hers by right. And she is very upset that Miss Mog is not willing to let her have a turn, even if she covers her feet in Princess Stickers. This brings Mog huge pleasure (the upsetting tLP, not the stickers. Ah sisterly love).
If you can't click the link, then know that it is a glorified beanbag. It's possible to have the seating shell custom moulded to fit your child, but this is a standard P-pod; a beanbag with a very soft but stiff insert which lets the child plonk but keeps them from the worst kinds of arching and twisting and suffocating on the beans. It's not as huge as I'd imagined it would be, although I have no idea what size this one is. You can I think move the shell to adjust from a more upright position to a flatter one, although the angle this one arrived at seems to suit Mog well. Longer term, I think she needs a little pillow for her head but the ever present fleece does a good job for now.
Our OT dug it out of stores; it looks like new. Which is a shame, as it means we probably can't justify a new cover. Well, not until this one's been properly polluted anyway. Where's the Movicol?
Thursday, 23 February 2012
Benjamin has discovered that beds are soft.
And small children are having to fight for ownership. Unfortunately we are still working on minor aims such as wrists, however contracted, are rarely if ever considered acceptable fodder, and that tubing for Nippies and CPAP and SATs monitors etcetera are not toys.
He has created for himself the role of flush inspector
which is slightly more acceptable than his other roles of toilet paper shredder and cat litter spreader.
He is dedicated.
Grolly is mostly unimpressed, but has decided he must be washed at regular intervals. This she does, when not otherwise engaged in making herself too fat to fit through the cat flap. The two of them almost nearly snuggle together at times. Grolly has forgiven me for bringing in this intruder and begun to sit on my chest again. She doesn't do laps. This would be ok, if it weren't for the fact that Benjamin has decided under the chin is his own personal spot. Two large fluffers sitting on my lungs mean no photos of them together. Fortunately it doesn't last long before Benjamin remembers he needs to jump on Grolly's head, and she remembers that she needs to pin him down for another Serious Washing. After which she squeezes herself out through the cat flap, pauses to jeer at him as I close it off to prevent him following, and settles down in the garden for a nice therapeutic round of hunt the leaf whilst he takes comfort in chasing one of her pieces of fur around the kitchen.
It's not a bad life
Wednesday, 22 February 2012
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.
Tuesday, 21 February 2012
The bad news: as we were packing up on Friday, tLP's incision burst open and started gushing blood and pus and fluids of various different kinds. The Dr's steristripped it up, bandaged the steristrips, and sent us on our way. It's been mostly ok, weeping quite a bit but apparently that is good (large fluid filled pocket under the skin needs to drain somehow), but then on Monday it decided to gape even wider than before. Sigourney Weaver sprang to mind, but thankfully nothing alive has emerged as yet.
So, back to hospital, were we got to sit in A and E thankfully only for an hour until the surgeons came and re-dressed it. No cellulitis, lots of healthy granulation (looks like a joint of beef sitting under the skin with yellow marbelled fat streaks. I may go back to being a veggie), but oh dear, can't be stitched now.
Back to hospital again today to have it repacked and the official verdict: it's going to have to heal itself from the inside out, rather like a giant pressure sore. How long this will take I do not know; it looked bigger today than last night. And how soon she'll be able to go back to school with a second mouth in her stomach I don't know either. She likes the idea of it being a bit like a hungry mouth; means packing it full of seaweed can be explained as giving it something to eat and feeding her tummy mouth is such a funny thought she almost doesn't get scared and sore when they do it. And she always stops screaming and sobbing to say "Oh thank you gentle doctor" as soon as they have finished, which makes the softer ones shed a little tear themselves.
Hospital trips aside, it's good to be home. I think it's easier than having her staying in; not that we've been offered that as an option, and not that she actually needs to be there. The ongoing leakage from her cecostomy (which is just above this hungry dribbly tummy mouth) is a bit of a concern. They swabbed the wound at A and E last night, so should hopefully have some results when we go back in tomorrow.
I'm really hoping this means the pocket of fluid has finally drained. Sedated ultrasound tomorrow, so I guess we'll find out then. In the meantime, any advice for fitting seatbelts on a child with an incision right across the seatbelt portion of her anatomy? What do people do post caesarian?
No photos as you really don't want to see this thing (and if you do, and you're local, then come and help me change the dressing one day). And no cute cat and child photos as you really don't want to see our house right now either (hmm rethinking the dressing change suggestion). I have now done 11 loads of washing since Friday; it is neverending.
Oh, and did you know, if you spend a fortnight in hospital and then when you come out, spend your day's respite doing things like filling up with petrol, doing a large grocery shop, buying loose fitting tops for your daughter to wear over the top of all her tubes and holes, and find something very gorgeous online, then your bank will put a stop on your card as they will assume it has been stolen?
This too shall pass.
Friday, 17 February 2012
Another day, another plan; forget the peripheral line unless the results are bad. So it all now hangs on getting clear results. So if the computer system would just kick into gear again, we'd be all set.
Tia. Not quite packing yet. But considering it.
Thursday, 16 February 2012
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.
Wednesday, 15 February 2012
Thursday, 9 February 2012
Wednesday, 8 February 2012
Cuddles a comfort but not a cure. Visitors welcome but liable to be snarled at. Or possibly pressed into service for their skills in bed changing and back washing (thanks K!)
And then, a big mysterious box turned up on the ward. Scissors being used not to snip bandages or stitches, but to unseal the Sellotape, and out popped a big purple get well soon balloon! And a lovely cuddly teddy bear, and don't tell tLP but a rather nice box of chocolates for Mummy too.
And then the nurse came in, and instead of "go away, stinky", she heard "look at my balloon". And the surgeon turned up to say he is really pleased with her progress, and he got a smile and a balloon flapping in his face instead of a screech.
And the teacher, and the play lady, and myself have all been treated to the sight of tLP voluntarily moving her arm to flap the balloon and finger the teddy bear's skirt. And ok, the smile was a bit forced, but it's there, and Thank You Sara and www.livvyssmile.co.uk
Monday, 6 February 2012
Anaesthetist said he'd try a different cocktail this time and warned me she'd "be like a teenager on a Sunday morning" for a couple of days when she woke up. I have a feeling he doesn't know the teenagers we see on Sunday mornings - unless they spend their time grunting and telling radiographers they are naughty pixies, nurses they are stinky and doctors they are just plain horrible.
I think it's safe to say she's not best pleased with any of them right now. But, she's not in pain, they managed the full op, everything which is supposed to be draining is doing so nicely. The chin strap for her Nippy can be placed so it doesn't block the central line, she can move gee head and betubed arm even if she doesn't think she can, and HDU have a Charlie and Lola story she hasn't heard before.
Here's to the bravest Princess I know.
Waved her to sleep at 9.30 this morning, had a frantic call from HDU about 15 minutes ago asking for her Nippy, got to the ward to find the Nippy gone.
And so it is that I know she is through the surgery - will be landing on HDU in around 15 minutes, and they'll be calling me once she's fit to be seen.
And I wonder why it is that the hour we had to wait this morning before she went to theatre was longer than the nine hours I've waited all day, and why this next 15 minutes are longer yet?
And I also wonder why this waiting room reeks of smoke.
Ps. Pic is view from my room upstairs in the Ronald McDonald house; my home until she's back on the ward.
Friday, 3 February 2012
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
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!
Wednesday, 1 February 2012
If that's you, then here are some reasons why parts of your family may not be over enamoured of the fluffy little beastlings.
Unneutered, they may at times spray the walls.
they like to scratch their claws, rejecting the very special cat tree you have purchased for the purpose, and instead choosing your child's toy box. and their ideas of suitable gifts are not always graciously accepted.
But still, how can you resist this?