Thursday, 7 February 2008

Pride goes before the pus.

I now have two girls with gastrostomy tubes. To those of you unfamiliar with the process, picture a pierced ear. Then instead of an earring, threat a thin plastic tube through the piercing. That's pretty much what a gastrostomy is, only instead of in the ear, it's in the stomach - up and to the left of the tummy button.

Remember getting your ears pierced? Those first few days, you have to turn the earring regularly, clean the ears scrupulously, and leave the earring in place to allow the piercing to form. It's the same with a gastrostomy, except that the stomach is not as clean as the ear. The piercing ends in a dark pit full of acid, and acid under pressure can eat its way back up through the new hole and burn the skin on the outside.

Mog's stoma (the piercing) is beautiful. Perhaps I have an odd idea of beauty; I'm sure most Miss World entrants would not consider a hole in their stomach to be an added bonus. But by beautiful I mean it is clean and dry, it is the same size as the tube which goes through it, it looks in fact like a well established ear piercing hole. You could leave it for a few hours without it closing up if you needed to.

Mog does get occasional infections. Her stoma was MRSA positive for a while, and may still be. Granulation has not been a problem for her (this is where the skin tries to heal itself and just grows and grows and grows around the edge of the tube). She gets the odd abscess which requires antibiotic cream, but once it has burst and drained, the stoma quickly reverts to its usual pristine condition. I have prided myself on this. Nurses have commented on how unusual it is to have such a beautiful stoma, and how it must be down to our care and cleaning process. I have seen quite a few gastrostomy sites, and although Mog's is by no means the only perfect one I've seen, I have seen plenty of disgusting ones. Some (but by no means all) of them have undoubtedly been due to poor care and cleaning. I have been laid back and breezy about how easy it has been to keep it clean, how regular cleaning and creaming when sore is all that has been needed, how we leave it alone when it's well and just rotate it, and how any gastrostomy site can look like this if you pay it a bit of attention but not too much.

Now Little Fish has a gastrostomy tube and a stoma all of her own. And I am eating my words. Pride goes before the pus. Little Fish's stoma is ugly, folks. The hole is now twice as big as it was when it was created, it is greenish, and the skin around it is raised, angry, and red. I'm told it's not an infection, it is because Little Fish is wriggling and the tube is not stabilised. The phrase the nurse used was "imagine a lamppost in wet concrete, the more you move it the bigger the hole it is set in will get". A lovely image. I am cleaning it in the same way I clean Mog's tube. She is screaming somewhat more than I remember Mog screaming - I think she has more of the anticipatory fear than Mog had. I am using Lyofoam, a special one way barrier dressing which sucks up the pus and stomach acid and lets the skin heal beneath it (straight gauze just holds the acid against the skin, ouch). I am taping it in place so it can't move. And still the hole is growing, still the sore area is spreading.

Can it be that for all my pride, the true secret to Mog's perfect piercing is not that I am so good at keeping it clean, but simply that she cannot move and wriggle and bend and stretch in the way Little Fish does? Is it perfect simply because it comes under no pressure? I'd like to think not, and I'm sure that the cleaning is important and not a bad thing to be doing. But I suspect that all my efforts are merely helping, and the main reason Mog's stoma stays a nice neat little stoma shaped hole is just that it is never pulled into an un-stoma-like stretch.

Of course there's always the more problematic issue that it could be nothing to do with Little Fish's acrobatics. It could in fact be that she is allergic to the tube itself. It is a latex free tube, but just because it has no latex in it is no guarantee she is not allergic to whatever it is made from. I do hope that's not the case; I'm not sure what, aside from silicone and latex, they can use. And she can't go without fluid for the rest of her life. If it's a question of allergies versus my pride, I'll take the pride fall any day.



MOM2_4 said...

Oh Dear! Poor girl / Poor mama!! Praying it is not an allergy!! Joshua's site is beautiful and we never had trouble with it and even when he 1st got it he was fairly active... not as much as little fish, but still wiggling and such.

Praying things will settle down and the site will decide that fighting isn't worth it and will start healing!!

Hang in there!!

Tina said...

oh goodness poor fish. Rosie was allergic to the first peg...then when we changed from mickey to Mini Button...had to go straight back to mini much to the serious annoyance of the dear shool nurse...who insisted no way could a child be allergic to a button!

we have not hd horrendous problems with Rosie's peg since canging o the Freka, it does et mucky at times and she does pull it and make it bleed but nothing dreadful. On he other hand the overgranulation ofEve's stoma caused horrible problems and untl the surgen said ther ws internal overgranulation I never knew such a thing ws possible. eve's was so gunky and the hole seemed t have enlarged,... I don't think it was due to wrigling and i dont think it was due to poor hygene...although hands up I am not as fastidious as mayb I ought to be.
Lyfoam caused rosie horrendous problems and it has always healed far better with nothing!
Will let you know the cream the surgoen prscribd for ee which has kep it fantatic since he silver nitrated it....I ould never let anyon less than the consultant surgeon near her with a nitrate stick!

Virginia said...

Ooh poor little fish poor mum. Like someone else posted she may have granulation internally causing drainage and lossening of the stoma. I had that wit Mikayla and actually had to put the silver nitrate in the stoma around the tube. That was a year ago. We have not had a problem since. I use soft washable g tube pads and they are flannel. I found they work better than the gauze. Mikayla has low tone and is like a Pillsbury Dough boy and her tube sucks in her folds. I have found these are thicker ones and they do suck the drainage away. She is never red anymore. Alicia never has irritation. I do not handle the buttons much and clean around them once daily with a clean diaper wipe.

Patyrish said...

Oh stoma problems. Had more than I like to remember. We still have them to this day. Makily has had her g tube revised twice (meaning it was taken out, allowed to heal up and then placed again). When she gets sick (even if it's just a cold) it leaks like a faucet. None of the doctors can explain why this is.

I have to say when her stoma looks good it makes me feel so proud, but when it looks bad....ooooh does it look bad and OH how I blame myself...even though I am changing gauze pads and applying cream every 20 minutes it seems like.

I hope it gets better and soon!


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