MACE checkup

 We had our follow up with our doctor for Nick's MACE.
So it was a day back at Sick Kids
Nick was excited to go to the Hospital (a feeling I want to keep). I had in my mind what I wanted to do (deal with the granulation tissue). But the MACE itself is great and we are so happy with it!

Well, it didn't go quite like I had in mind. The doctors looked at it and said it was healing well, that it was cosmetic and will eventually improve. This was not what I wanted to heal. I really wanted to do the Silver Nitrate to get it all healed up now.

The doctor listened to me. Dr Lorenzo is great (and as he came very well recommended to me, I recommend him to anyone going to Sick Kids). But in the end he explained why we would`t be doing it.
To try to heal the granulation tissue (with the silver nitrate) there is the risk that we would heal too much, or in medical terms stenosis of the stoma. So the actual MACE stoma may close. I do not under any circumstances want the stoma to close and have to redo the MACE.

Actually looking at the belly button. It does look better than it has in a while. So we will keep doing what we`ve been doing. Using the Milk of Magnesia, tea tree oil and keeping it open and not covered (and keeping Nick`s hands away from scratching at it).

We are cleared right now, and will continue to follow up with the urology clinic at Bloorview.

Our heartfelt thanks and gratitude to Nick`s health care team for our great experience with the MACE. Dr Lorenzo and his NP Abby!

MACE update

We continue to battle with the granulation tissue. Every time I think I have it healing something else brings us right back to the beginning. I also have a feeling that Nick has been scratching at it. If you have no desire to see pictures of granulation tissue in the belly button up close... just skip this post

There has been trial and error in the process. I have been taking pictures every night to try to look over the progress. Which gives anyone who looks at my phone pictures a bit of a double take.

We used an antacid, Milk of Magnesia, in a liquid that I put a small layer on with a Q-tip. I also tried to soak the Milk of Magnesia in a gauze square. After about 3 or 4 days I found that it wasn't making any difference.So I thought I'd try my other plan. The Tea tree oil.
I mixed 1 1/2 tsp of water with 3 drops of tea tree oil, soak a gauze pad and taping the pad in place for a couple of hours. The first couple of times the skin around the belly button turned red, so I added vaseline around the belly button, so that only the granulation tissue would get 'treated'.

 After doing it for a couple of days I started to have some difficulty putting the catheter in. Because the tea tree oil helps wounds to heal, I was afraid that it was helping too much and starting to close the stoma.
I looked up a bit more online and found that the sites that discussed the tea tree oil had a catheter left inside the stoma. So After our nightly routine I cut a line into a gauze soaked with the tea tree oil and wrapped it around the catheter. Then the taped the whole thing down and left it in over night. Kind of like how the catheter was left as the MACE started healing originally.

That worked pretty well.
Except for the skin issues.

Regular hospital tape left red marks, Clear tagaderm (the IV covering clear tape) actually left blisters. Paper tape and the white dressing tape were the only ones that Nick's belly did not react to. Except that it leaves his belly all sticky, but in the long run using some Remove pads helps.

I've left the belly button open to air some days and covered it with a bandaid other days. I think that the bandaid helps to protect it when/if Nick scratches at it. It will look like it is healing well, and then the next time I turn around it is right back to where it was. Any irritation no matter how small makes the granulation tissue grow. The progress we see is measured in mm. It is very frustrating.
The only thing that keeps me from really freaking out is that it doesn't actually both Nick. It is all just cosmetic.


One night the catheter came out and sat against the tissue and irritated it. Back to square one
Another day the gauze that is on the inside of the bandaid came undone and was resting against the tissue and irritated it.
One little scratch and we are back to square one


I am continuing to treat it with the tea tree oil and the Milk of Magnesia, but in the end I think that we are not doing anything to prevent the use of the silver nitrate. Maybe keeping the granulation tissue from getting worse?
I only hope that the silver nitrate will actually be a solution.

Because in a month between these pictures, I'm not sure how much progress we actually made

 Of course for those that are interested I'll follow up with how the Silver Nitrate works out. I've been in contact with the urology NP and she wants us to continue. We see Urology for follow up the beginning of November (and hopefully the Silver Nitrate).

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!

But...

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!