Monday, 8 December 2008

Just another manic Monday.

"Mummy I not a naughty girl"The jury's out on that one.

Back to hospital today. Routine this time - the long awaited urodynamics for Little Fish. Having been told (erroneously) not to attend one appointment, failed to cancel another one correctly, been misinformed about the date of a third we had been discharged with a nice letter informing me that I was putting my daughter's life at risk by choosing not to attend, whilst I was running around trying desperately to make an appointment. Thankfully all is now better understood. Or mostly - I thought our appointment today was for 1 or 1:30, so turned up at 1 to be on the safe side. Only to be 2 hours early for the appointment which was actually at 3. No, really, we do love hospital waiting rooms.

A nice moment whilst waiting for all the radiology to begin - receptionist answering the telephone "Hello, Children's Ideology?"

A less nice moment - watching the cleaner repeatedly tamp down a full clinical waste bin with one of the yellow "caution wet floor" signs. He did wear gloves to do so and wash his hands afterwards. No one wiped the bottom of the sign though - and presumably this sign is used to warn people that floors have been mopped. Nothing like a good layer of clinical waste to give that nice clean floor an added sparkle.

A deeply satisfying moment for the urology nurse, clinical team and ourselves - the first patient of the afternoon did not attend, so we didn't have to wait 2 hours and they didn't have a wasted slot.

A decidedly nervous moment - the urology nurse noticed Mog, the radiographers were unhappy about having her in the room even behind their screen (which is what we do for xrays at the orthopaedic hospital; I'd not even thought about the possibility of it being a problem). A worried five minutes thinking that this appointment would have to be cancelled and rearranged and our status as nightmarishly unreliable and awkward family would be secured.

And a very relieved moment; one of the play staff from the day surgery ward was free and able to come down to sit with Mog out in the waiting room.

Urodynamics consists of passing various tubes into various orofices and measuring pressures whilst pushing contrast dye into the bladder. Smiles all round, serious mutterings from the lady Little Fish Christened "Dr Wee-Wee", and an hour of distracting Little Fish and trying to keep her lying still on a bench as she proved conclusively that her bladder will not hold more than 20mls. Which is odd, as ultrasound showed 50mls.

However, we came up with a plan - the first step in what will probably be a three year process "operation continence". No changes until after Christmas, at which point we will be starting LF on a medication designed to help her hold onto urine.

Back out to the waiting room to a somnolent Mog and a bored play person who had had lots of fun things to do if she'd woken up.

Home then, and onto the complexities of other medical stuff - LF is starting Flucloxacillin to treat the latest growth on her gastrostomy. Grumps at the process here. Not our usual GP doing the prescribing, so prescription sent on Friday to the chemist which doesn't deliver rather than the one which does. Queued today to collect it and the pharmacist seemed surprised we wanted it which seemed somewhat odd. And now we have a medication which must, according to the pharmacist, be given four times a day, either an hour before food or two hours after. LF wakes up at around 7, has breakfast and then a tube feed one hour later (any closer together and she vomits). She goes to preschool at 9.15 and has a snack at 10. 30, tube feed at 11.30, lunch at 12.30, tube feed at 2.30, tea at 4 and a final tube feed at 6 before bed by 7. I see no empty stomach availability there. Dosing her in her sleep is not an option either; her gastrostomy site is so painful any touch sends her through the roof, and the thought of leaving the extension tube attached sends her into orbit. It could be an interesting couple of weeks.

Good news too though - Mog finally woke up at about 5 tonight. She even smiled spontaneously! And managed a whole twenty minutes lying on her back - first time in a long time she's managed to lie down for anything longer than a quick pad change and wipe over. She couldn't manage that again later on this evening so is now snuggled up cosily in her armchair again, but she did it once, that'll do for now. If she wakes up tomorrow morning she may even end up back in school which would be quite exciting for all of us.

And now I have just realised that what I have been thinking is thirst thirst and more thirst is actually a sore throat. But Mummies don't get to be ill, so I must go and try to sleep it off.

Night all


Anonymous said...

Hope your throat is better when you wake up. The glasses were a reminder of how I would find Ambers on occassion. Thd joys of childhood.
Glad you got the studies done!
That is so gross about the caution cone!

Sara x said...

Hugs, on your busy day. No illness vibes for mommy as you know you just have time to be ill.

Sara x

Anonymous said...

Another busy busy day - M's glasses are in a similar if not worse state at the moment - joint effort at school - he swiped them off his nose and H run over them in her wheelchair!!

This time they are beyond repair and off to the glasses graveyard!


Tina said...

Hope your night was peacful and your throat less sore.
Also praying for continued improvement for Mog and that fluclox can be tricked ito thinking a less than empty stomach is OK!

Anonymous said...

sorry to hear LF's gatronomy site is still sore. Celyn had a PEG put in last week and is shrieking if I even pick up a syringe. sigh.
Tell me it gets better!

Tia said...

It does! Well - it did for Mog. Her gastrostomy was ridiculously sore to begin with, she had a miserable time and ended up back in hospital with gastroenteritis, vomiting blood, the full works. But once it healed, it healed. I think she's had maybe one infection which has needed more than a spot of antibiotic cream to fix. And although she has problems with absorbing feed, problems with wind, problems with her stomach and gastric system generally, the PEG and Fundo are absolutely without any shadow of a doubt the very best things we did for her. No more pain from reflux, no more vomiting, no more teeth being destroyed. And so much more energy to learn - it was after the op that she learnt language had meaning. Before that, she was spending all her energy in trying to drink enough to stay alive - 13 hours a day or more on bottles and gloop. Actually she probably spends a similar amount of time hooked up to her pump now, but it's effort free, she can put her energy into other areas of life.



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