Monday, 23 February 2009

A cathing wee will go...

This morning we had a follow-up from December's Urodynamics appointment.

Little Fish started on her "wee wee medicine" in January, and has been having beautifully flushed cheeks ever since. We were warned to watch out for urine infections; instead we have had some wonderful side effects - the oxybutinin has dried up her dribble, enabling her to pronounce her "S"s and move her tongue without drowning, it's given her a healthy glow and lovely warm fingers, and she seems to have been managing to go longer between wees.

So the plan for today was to sit Little Fish on her "wee wee nurse"'s "wee machine" (a special commode which measures flow and output) until she performed, and see where we should go from there. In preparation for this, we have spent the last 48 hours measuring Little Fish's input and output, a process which involves, scales, syringes, gloves, and if you aren't familiar with the process I strongly advise you not to use your imagination.

The charts were filled in, the nurse reviewed them, LF sat on the pot. And nothing. And nothing. And then a lot more nothing. So we moved LF over to the bench in preparation for a quick cath; at which point she rather kindly let loose all over the bed liner. It's obviously not the first time the weewee nurse has had to deal with this; she knew exactly how much it weighed dry so was able to work out that our clever Little Fish can now widdle 44mls at a time. Not bad; back in December it was more like 10mls.

Next step, empty her completely, which revealed the not so great news; she still had over 100mls sitting tight in her bladder. Discussion with the consultant needed, so Little Fish and I headed over to the waiting room, where we had a rather handy informal consultation with the respiratory nurse and made friends with a child waiting to see the gastrostomy nurse. And we waited. And we waited. And we waited... and then two hours later we were called back in to hear the verdict. And we emptied her again and she had 200mls sitting there.

So as of today, we are beginning Clean Intermittent Catheterisation.

We have the world's dinkiest little catheters
They extend like this:
And then open out like this:
And the rest I'll leave to your imagination.

Those who are familiar with the process will be familiar with the issues of invisibility I had this evening; I think I was more traumatised than Little Fish. We'll all be impressed though with the fact she has been dry between all the cathings; we might be needing to buy big girl pants rather sooner than we'd thought.

This and other arrangements we've made over the past few weeks seem to be combining nicely. The three-year "operation continence" could actually be achieved over the next few weeks.

But, before we get too smug about it all, there is a down side - until we've got the world trained up I'm the only one who can do it, which means I need to be calling in on her every couple of hours, wherever she happens to be. M, if you're reading this, this is no time to be poorly! Hurry up and feel better soon!

There's another down side - it's yet another thing I have to wash my hands for. Anyone got any good recommendations for moisturising soap? And someone needs to invent some nicely scented and non-drying alcohol gel - do you think dunking my hands in Baileys would have a similarly cleansing effect? I'd lick wash it off...
Tia

12 comments:

Sara x said...

I think the simple range of handwashes are really good, senstive and moisturing. See i had comment on the hands havent a clue of the bladder.

Tina said...

hugs

Michelle said...

If/when it comes time, the Mitrofanoff is an EXCELLENT alternative to regular cathing. I have never regretted the decision to have this cathing stoma. It is so easy.

Michelle & Emily

Doorless said...

Those are some catheters! I had to do that with Amber after her kidney problems brought on by the infection from her back surgery. NOT the most fun thing to do!
Hope all goes well for both of you.

Tia said...

Mitrofanoff is on the cards, but they want to leave it until she is a little older - eventually though that's how she'll become independent.

At which point we'll be considering tattoos around her various stoma - "in" and "out"!

Tia

Anonymous said...

I'm sat here with legs crossed. Does it hurt her at all?

Tia said...

Not when I get it right. And when I get it wrong, it only hurts when I get it very very wrong in a bodily piercing rather than actually hunting for the right hole type of wrong.

I need a good anatomy book!
Tia

Alesha said...

Oh my! (after reading your last comment!)

So sorry you're needing to start this process. They mentioned it at one point for Isaac, due to seizures affecting his emptying; but our Ped was against it, unless we had infections, which we don't.

We were a bit traumatized by the mere mention of the process, so you have my FULL sympathies!

Children are so resilient and forgiving though, especially when an errant poke or prod is followed by,

"Oooo, Mommy's so sorry! So sorry! So, so , so sorry!" and lots of kisses!

(I am forever scratching Isaac with my fingernails, and have repeated the above process so many times that my African Grey parrot repeats it word for word!!!) : )

Praying for you to learn the process perfectly and quickly!
Alesha

Tia said...

Now I'm laughing at your parrot - I'd love to hear that!

Tia

Marta said...

Do you have Bath & Body Works stores where you live? They have really great moisturizing antibacterial hand soaps and sanitizing gels in a variety of scents. :)

sarah bess said...

you are goofy and this is hilarious. this kind of info is extremely helpful to me. so glad you blog about your experiences. Both your girls are just adorable!

Tia said...

Glad the info helps!

Rereading this just 2 weeks later and you know, it has become a normal part of our lives so quickly. I still don't get it right all the time but it is become routine.
Tia

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