Saturday, 25 April 2009


Today three children managed to get through
  • 1 set of bedsheets
  • 3 pairs of pyjamas
  • 3 chair covers
  • 7 sets of day clothes
  • 8 muslins.
The Wahooligan's tube leaked 5 times, 3 times during just one feed, once during a different feed and once for no reason whatsoever just regurgitating stomach contents. Mog's tube leaked once, draining her evening's medication handily out onto the floor. Little Fish's tube did not leak at all; nor did her bladder and I could only get minimal volumes through the cath. I'm suspecting that this is possibly not a good thing - can't decide whether it would be better for her to flood the bed (again) tonight and for there not to be an issue or whether I'd prefer to stand a chance of getting a reasonable night's sleep and giving the washing machine a Sabbath. Does this make me a bad person?

The Wahooligan needs 1-2 hours' sleep during the day in order to stay happy and to sleep at night. Ten minutes was all that happened today; cold wet milky backs are apparently not conducive to naps. Tears until bedtime and then a big contented sigh and heavy eyes closing at once at 7. And now the Wahoos are starting up again, someone tell me this isn't it for the night now?

I woke up at six this morning to the gentle sound of the Wahooligan's morning chuckles. Lovely. Even more lovely since it meant I was waking at six not three - always appreciated. Pillow over the head delayed getting up until Little Fish decided to remove the duvet from her own head and shout for Nippy removal. I'm not overimpressed with her people skills though - "You take my Nippy off Mumma you cath me I sit in Wahooligan's cot and you have a shower you bit smelly". Thanks, kid. However since she followed it later on in the morning by stroking my washed but unbrushed wild morning hair and saying "I love your hair Mumma, it very pretty very stylie" I might forgive her. Some time. Next year maybe.

So, up at 6. 30, children decontaminated, fed, decontaminated again, house generally disinfected and various stenches (mostly not mine, despite what LF may think) removed. It somehow took four hours to get the four of us up and ready. How Friend would laugh if she knew. Things were slowed somewhat by the discovery that the cleaner had helpfully hung a load of washing outside yesterday and not told me; gentle rain overnight and this morning not entirely conducive to the drying process.

Quick trip out and then home in time for the next round of feeding and changing and cathing and medding and all the rest of it. If I start with Little Fish's cath each time, I can just about get the whole round of feeds and changes and real food sorted before it's time to cath her again. I'm sure timings on this will improve eventually, probably about the point where I stop losing precious minutes staring into the open 'fridge looking for syringes or hunting through the bathroom repeatedly in search of clean socks.

Another round of "what exploded in the kitchen?" before stopping everything for a while to chat with visitors. The Wahooligan did the tube trick twice during their visit; nice timing as another pair of hands to help mop and change. Anyone know if you can change the end of an NG tube without changing the tube itself?

And then goodbye visitors, hello chaos my old friend. Tears from two children and amused laughter from the third, Upsy Daisy to divert and time for more food and meds and feeds and changes and then suddenly bedtime and more than bedtime.

And now three children in bed, and one me half feeling it should only be ten in the morning and where did the day go, and half feeling thank goodness the day has gone and can we call tomorrow off until I catch my breath please?

It's not all bad. We got out this morning; it took us four hours to get ready, but we managed it, we left the house, we all squeezed into the van somehow, and we managed to buy the birthday present we need for tomorrow. We also managed to buy a new ball for the Wahooligan, a couple of squeezy things for Mog's fists, and a wooden train on a threading string for Little Fish, but I think that's probably ok. And we met Grandad in Somerfields, and he stood guard over the little ones whilst I moved my van away from the car had parked in our boot despite the "please leave space for wheelchairs" sign on the back of it. Handy.

And we had the house semi presentable and the children all clean and fed and happy by the time our visitors got here. We acheived two things today; I'm happy with that.

Tomorrow we have a long list of Coulds, a medium list of Shoulds, and I need to review the Musts list. And remember the Don't Under Any Circumstances list too. The leap from two to three is a big one logistically. We're enjoying it, and we are managing, but it is a big change. I'm loving it, and mostly the little ones are too; I just haven't quite tweaked our routines into order yet (and for those who know us; yes there are routines; under that ocean of chaos is a bed of order and tranquility. It's just buried under the waves. Anyone fancy diving with me?)



Anonymous said...

I'm sure the routine will soon be in place--Is the little one there to stay for awhile? I imagine that the girls are enjoying him.
Sounds like you did a wonderful job--handling it all today--and YES I'd say a goodnights sleep and a Sabbath rest for the washing machine (and you) would be a reasonable thing to hope for! HOpe it happens.

sarah bess said...

bless you, Tia!

Anonymous said...

Have just enjoyed the catch-up. Thank you. Enjoy this afternoon and I reckon you'll have the new routine up and running like clockwork in a couple of days.


Becca said...

Yes, Tia, you can change the end of the tube without changing the rest. If you can, get a Luer lock (screw-end) one as those are pretty leakproof - it's what I have and it works very nicely for me, especially handy that the syringes screw on so no fountain effect if it kinks while meds are being pushed in.

Sounds like you're all having a lovely time, really - how old is the Wahooligan, approximately?

Tia said...

The Wahooligan is younger than the other two girls so Little Fish is no longer the baby.

Luer Lock is what the new NG tube is. I like the Luer Lock for the girls' gastrostomies - Mog blows the valve on the Y port ones with the pressure of her stomach. But the Wahooligan has a nice set of stoppers for his medication bottles and they only fit the older syringes, which don't fit into the Luer Lock ports. Ah well.


Becca said...

Ah, but the older syringes DO fit into the nozzle of Luer Lock compatible syringes, so you can draw it up with the little-ended syringe and then stick it in the LL one.

Or, get some adaptors - male-male Luer Lock adaptors will allow you to fit the older syringe into a LL port, albeit with a small risk of leakage.

The Wahooligan is lucky that all his meds come as syrups - of the 8 drugs I'm on, only two are liquid; one tablet to crush, one capsule to open and four dispersibles. It's a right pain in the 'arris, especially when I'm taking somebody new through the whole routine.

Tia said...

Yes I'm really grateful for the liquids; Mog's meds are a mixture of syrups and tablets and powders and they're a pain. Especially when you have to give 3/5ths of a tablet... That said it's much easier for travel to take 4 tins of pills than it is to take 12 bottles of liquids so it evens out I guess.



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