A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, September 29, 2014

MACE update - granulation tissue

The MACE continues to be working well.
The underwear is working fantastically!

Nick isn't having any pain, the stoma (belly button hole) is healed. We can catheterize the belly button every night and some mornings. If I find the hole is getting tight I do it more often. The ACE stopper helps, but I think the ACE stopper has caused, or at least contributed to the granulation tissue we are now seeing.

For the first 6 weeks there was some discharge from the stoma, not a lot, just a bit for it to be a bit wet, not even to get his shirt wet. I wanted to see if it got better if I didn't catheterize it every day. It did get better, but the stoma has gotten tighter slightly.
I can still get the catheter in without difficulty, it is just snugger.

In all, the MACE is still great and we are all so happy!

There is granulation tissue.

I didn't really understand what granulation tissue is.
This is what Nick's belly button looked like 3 weeks ago, about 6 weeks after the surgery

This is what it looks like about a week or so ago. It started off very small and I thought at first it was just a little irritation. But it didn't both him, so I tried cleaning it really well with soap and a baby wipe, (PS not the right thing to do). 
I used the ACE stopper, but it got worse. I tried just covering it, but it didn't make a difference and then Nick started getting irritated around the tape.

It looks like he has an  ulcer at his belly button. But it isn't. It doesn't hurt him. It did bleed a small amount when I started to touch it, but as long as I leave it alone it is fine.

I talked to the Nurse Practitioner who said that it was granulation tissue and gave me advice about what to do. She suggested a steroid cream and a saline flush. We had some corticoid cream left over from Katheryn's eczema, so I used that for a week.
And this is what is looks like now.

No all that much worse, but not better. So I decided to do some research (and advice from the nurse).

First I wasn't really sure what granulation tissue was. It is the body trying to heal itself, with new connective tissue. Like under a scab, but the scab isn't forming, just the new connective tissue. It also has blood vessels which are fragile and will bleed easily. It is not uncommon in the first 3 months.

This is a great article that talks about granulation tissue and experiences with a g-tube.
http://agirlandhertube.blogspot.ca/2012/12/granulation-tissue-101.html If you are looking for information about granulation tissues, g-tube and other 'tubes' websites and support sites have a lot of valuable and been there information. There is also a pdf file that is easy to understand available here

These pictures are nothing compared to granulation tissue that occurs when there is a tube left in the stoma. But just becuase it isn't horrible, doesn't mean that we shouldn't still make it go away.

We are exploring some additional options to try them out.
1. Reducing friction. No more ACE stopper
2. Keeping it clean and dry. If there is leaking, protect the skin.
3. Steroid cream, we did this twice a day for about 10 days without any really improvement. It is steroid and the cream specifically says not to use for more than 7 days. We used the regular cortisol cream and there was talk about a strong steroid cream.
4. Saline flushes. To keep it clean and prevent any dirt. The saline can also help to dry out the tissue

OK we have done all of the above, now we are looking at some other things.

5. Maalox. OK Sounds weird, but this is what the NP recommended today. Get some plain Maalox liquid and dab it on, about 3 or 4x a day. *Just found out that Maalox is no longer available, if you google it you will get a bunch of conspiracy theories about why... who knew!
I am waiting to hear if any liquid antacid is ok to use
6. Tea tree oil, mix it with 5mL water on soak into a gauze and leave the gauze in place 2x a day.

The last thing to try will be when we get to our follow-up meeting in November, is Silver Nitrate.
7. Silver Nitrate is a chemical that burns the granulation tissue (silver nitrate sticks look like matches). Granulation tissue doesn't have any nerve endings so it doesn't hurt (as long as you don't touch healthy tissue).

Looking through what to do with granulation tissue, it talked about using vaseline to help to protect the healthy skin. We had been doing this, but not consistently. I'm wondering if we could have prevented this with using the vaseline more regularly? Also keeping the stoma clean and dry and protecting the skin and not having anything rub against it.

I've spent the last week or so learning all about granulation tissue. The good thing about this is that it isn't an infection, it is a normal body response (that we don't want to happen... but still normal). It looks sore, but it isn't. And we have treatment options.
I'll keep everyone posted!

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