Information for Malone/ MACE/ Appendicostomy - Disabled Living
Information for Malone/ MACE/ Appendicostomy - Disabled Living
Information for Malone/ MACE/ Appendicostomy - Disabled Living
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What do you wish you had known prior to surgery<br />
that you had to learn the hard way?<br />
• Don't expect to get the flush perfect <strong>for</strong> several months so<br />
anticipate them wearing pull-ups until all the kinks are worked out.<br />
• I wish that we were more aware, when he first got the <strong>Malone</strong>,<br />
about the possibility of it closing up and/or having pain when trying<br />
to insert the catheter. We had to learn the hard way that the skin<br />
can heal very quickly -- We had to go down to a 6 fr feeding tube<br />
(taped on) <strong>for</strong> our irrigations and work back up to a 10 fr. Once he<br />
was back to 10 fr, we obtained the ACE plugs and we haven't had<br />
any problems since! (Saved us from having to do a revision!)<br />
• Stomas are very vascular. It takes very little irritation to cause it<br />
to bleed, and it takes a while to get it to stop. Make sure and keep<br />
it covered (we like to use white paper tape), so that the stoma<br />
stays nice and protected.<br />
• That it wasn't a quick-fix solution. Our surgeon let us believe that<br />
we could go straight home and everything would be wonderful<br />
immediately. However it took us 18 months to finally get things<br />
working smoothly and that only happened because I found this<br />
network. I am really glad I didn't give up on the <strong>MACE</strong> though as I<br />
was tempted to when the going got tough.<br />
• Insist on total bowel cleanout be<strong>for</strong>e the surgery, even if this<br />
requires hospital admission the day be<strong>for</strong>e.<br />
• The new tract will want to close up. Keep a tube in place at all times<br />
<strong>for</strong> the first several months.<br />
• That it would be a gunky, goopy messy wound site.<br />
• That the recipe is everything and it doesn’t pay to stick with what<br />
the doctors recommend if it’s not working. Just saline rarely works!<br />
The Mums at the coalface are much better at recipes.<br />
• That it’s not as straight<strong>for</strong>ward afterwards as the surgeons lead<br />
you to believe. The surgery is the easy bit, it’s getting it running<br />
properly and all the little teething problems that you don’t expect.<br />
• Nothing really except we are glad that the <strong>Malone</strong> my child has is<br />
larger than most we saw while we were in hospital. My child uses a<br />
size 12FR catheter. Many of the kid’s catheters are tiny. We like<br />
the larger size and wonder if it's less prone to closing.<br />
• It took us several weeks - maybe six? - to figure out the recipe.<br />
That was hard <strong>for</strong> us. We were just using plain saline, with no<br />
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