Wednesday, 22 February 2012

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.



Sara x said...

Ok I confess I'm medically dense but I think I grasp the difference. I must say you are handling it calmer than I would be, then again what else can you do. I just hope the surgeon proves right and this way works out for A. Hope things calm down soon. In my prayers like always. X

Mindo said...

I was shocked that tLP wasn't given the agreed procedure! And I echo Sarah's comment, you are incredibly calm which must work in your favour when having to deal with such complex medical issues.

I hope that everything heals well and quickly, and that swimming lessons will be enjoyed in June!

Lisa B said...

I hope it works out. I'd have been seriously unhappy that the surgery done was different to the surgery expected. Hats off to you for remaining relatively calm about it.

The only thing I can think of is to put a pillow between the tummy and the belt. Not sure if this would be effective though.

Alesha said...

I cannot even begin to imagine your level of inner frustration. I know why you are staying calm. It does no good to alienate the one who will (hopefully) help solve the problems. BUT I also know at some point, all of that frustration will come boiling up and out. So...praying for YOU. Praying for healing for tLP. Praying for Mog who must be delighted to be with you both again!


Anonymous said...

Oh the unexpected is such fun - not! Hope it all works out right... don't suppose you can put red nail varnish on the closing bit of the cecostomy as a warning / distinction? Or a button buddy under one not the other?
K x

R said...

If she was about 15 I'd be trying to talk her into getting IN and OUT tattooed by the respective holes.

Failing that, how about a few sets of button buddies with it written on/stitched into them in VERY BIG LETTERS?

Tia said...

We did consider tattoos but I think permanent pen will do for respite - for now at least. That or henna.



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