[tri-med] Re: New to the group/Bard button valve leaking intermittently

----- Original Message ----- 
From: "Annette Oseguera"
>>Annette's button still has all the red bloody granulation tissue around 
>>the stoma and she's had her button since she was one month old!!!

I am not sure of the original question as I have been off line for weeks 
(Alex has been unwell and between that and my own treatments we just havent 
been home)
Anyway Bards leaking and granulation caught my eye so thought it may help to 
share my experiences.

Granulation is the bane of our existence and I can only describe Alex as the 
granulation king. This kid doesn't limit the formulation of granulation to 
his PEG he forms granulation tissue around the vent tubes in his ears AND 
now his hearing aids are causing granulation on the surgical scars behind 
his ears. His ability to form granulation to reject anything is one of the 
reasons we are proceeding slooooowly with the plans to get him an implanted 
hearing aid. The though of treating granulation in his middle ear scares me. 
There apparently is a medication that they can take to reduce it but its 
pretty severe and I digress.

Granulation is the body's "normal" reaction to reject a foreign a body. So 
in that regard its nothing to panic about but it is highly vascular so 
bleeds easily and its a pain - literally. To limit granulation you need to 
have a well fitting button - the more a button moves the more it irritates 
and the more granulation it produces. The more granulation you have the 
bigger the stoma gets, the more the button moves - vicious, vicious cycle. 
If you want the rainbow - granulation means a pretty good auto immune 
system - the body is fighting to reject a foreign body.

Bards don't come in the range of sizes that the Mic-Key and others do 
unfortunately. They should however still fit snugly. The space between the 
button and the skin when the person is sitting should be no bigger than to 
allow an American dime to fit. (its slightly larger when they are  laying 
because our stomach flattens when laying) If its more than that the doctor 
should put spacers in for Bard or you need to resize your button if its a 
Mic-Key. The Bard comes with spacers, they are simply little plastic discs, 
that fit between the outer button and the skin, but of course because its a 
Bard the doctor has to do it.

That aside there are a number of treatments for granulation and the bottom 
line is once its there you need to get rid of it. Our favourite is cortisone 
cream because its quick, painless and very not messy. We use Diprosone which 
is 0.05%. I place it around the stoma under the button with a cotton bud 
(cue tip) up to three times a day. I do that for three days then he has a 3 
day break. For the granulation king thats usually enough, unfortunately he 
is a teen and I am not allowed to touch or see anymore which causes problems 
because he wont do it himself. Some doctors dont like cortisone cream and I 
agree its to be used carefully but little is absorbed via the skin and if 
you dont use it every day and there is infection it shouldnt cause issues, 
the biggest being thinning of the skin. We have been using it now for 14 
years with no problem. When Alex had bleeding ears from the vent tube 
granulation we used cortisone based eye drops to treat that as well.

Another option is silver nitrate or copper sulphate crystals. I am not good 
with those. Essentially they are caustic and are used to burn the 
granulation, killing the blood supply so that the excess tissue turns black 
and drops off. Some folk do it regularly with no problem and its not as bad 
as it sounds, I have done it in the past, but I am always scared that I will 
slip and end up burning his stomach not the granulation. Some say it doesn't 
hurt, Alex tells me it does so we go cortisone.

The final option is drastic but it works. The surgeon can remove the 
granulation under anaesthetic. Alex had his surgically removed last year. 
Its a very short anaesthetic and he was in and out within 15 minutes. 
Problem is that the master had it all back within 6 months. The surgeon has 
offered to treat it in his rooms every couple of months but at $100 a pop I 
am still trying to make the master do it himself or let me. Alex's 
granulation is worse when he lets the water level in his balloon get down 
(he has a Mic-Key) and that allows more movement of the button. Checking 
buttons is liking making him shave or getting him to only stay in the show 
for less than 5 minutes. Teens!!

Once you get rid of the granulation it takes a few days for the stoma to get 
smaller again - some doctors put in a larger tube and grade it down but we 
have never had to do that. (eg if you are using a 14 French they may put in 
an 18 for a week then change it to a 16 then the 14 again.) Alex has had an 
18 pretty much all his life. (because I always gave him pureed food not 
formula - you need the bigger size to make it easier)

What to do about stomach acids leaking and burning the skin? I know some 
folk use the gauze around the button but I was told not to by our doctor as 
it just keeps the acids on the skin and provides more friction to cause more 
granulation. If we have stomach acid leaking (and granulation does cause 
that to happen because it makes the stoma bigger to let the foreign body 
out) I use a mixture of betadine and mylanta. I just mix up a 50 / 50 paste 
and paint that around the stoma with a cotton bud (cue tip). When you can't 
see the yellow from the betadine its time to redo it. Yes the gunk will 
stain his clothes, especially when he is active - but I just make sure he 
always wears a singlet and I intend to buy shares in the Napisan company. 
Its just the norm in our house that singlets and socks go into the napisan 
bucket at night and get washed in the morning. If there is enough to soak 
through his singlet onto his shirt it needs attention and thats when we have 
our mother / teen son battles. (along with "you will not grow a beard at age 
14 get in there and shave now!!!" or even better "soap is your friend" or 
the latest "shampoo is for the hair on the top of your head not elsewhere" - 
please God send me a male to deal with the boy stuff!!!!)

Leaking Bards - its the second biggest fault with the Bard in my humble 
opinion, the first is that the Bard has to be inserted and removed with that 
horrible obturator because it has that hard plastic flange. The reason that 
the antireflux valve breaks so easily on the Bard is that its internal. In 
the Mic-Key the anti-reflux valve is external and why they have a higher 
profile. Because its external it is a more solid valve plus the Mic-Key 
valve was made stronger because they intended for it to be used with food 
not just formula. When Alex first got his PEG he had a Bard and the valve 
went within a couple of months. We hung on for a couple more months by using 
the cap to stop the leaking but eventually the cap broke too. For a little 
while I became adept at flushing with air. That wont work if you have a baby 
that is volume sensitive but it will help with leaking from a broken valve 
by creating an air pocket. (sort of like when you are syphoning water and 
get an air pocket in the tube - the water wont flow) What I did was get a 
feeding tube and measure how much air it held then I added 3cc's for the 
stem of the button. After flushing I would then syringe that volume of air 
into the tube, just enough to make sure there was fluid in the button stem 
to start a reflux flow of liquid. It worked for us, Alex wasn't particularly 
volume sensitive and even though he had a fundo a couple of cc's of air, if 
he got any, didnt bother him, But it was my trick in a desperate situation 
and I doubt the manufacturers would recommend it.

The only real answer is a new button. We did 2 Bard changes before I kicked 
up a stink and told the doctor that I didnt care if the Bard was cheaper 
than the Mic-Key (about 1/2 the price) I wasn't subjecting Alex to a Bard 
change again (the usually anaethetise children for Bard changes here but 
because Alex has central apneas they wouldnt so he was awake and I had to 
hold him down). So we got a Mic-Key.

In 12 years we have only had one Mic-Key valve break and that was when I was 
putting pureed food through - usually its the balloon. Even so we get 6 - 12 
months out of a button and the change of button is done at home, takes 60 
seconds tops and is relatively pain free because you don't have a flange to 
get out of the hole.

I hope that helps some and I apologise if it has nothing to do with the 
question originally asked. I opened my mail and got 2,000 emails it will 
take a little while to catch up :-(

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (14 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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