June 11, 2011

Everything seems to have a price

Sadly, things quickly took an unexpected turn after my last "life isn't so bad with a g-tube post". It's been a rough couple of weeks trying to keep her "button" area healthy. We noticed that she had some extra red/fleshy skin growing around it and we were immediately concerned. We brought it up to the GI Dr. nurse and she brushed it off as normal and just something that happens when you have a G-tube. Because it was small and didn't seem to bother her at first I was accepting of that answer. However, it quickly grew in size and then started to bleed. I decided to reach out to the Surgeon's nurse and thankfully she was very responsive. I spoke with her on Wednesday May 25th and she arranged for Annabelle to be seen the following Friday, May 27th.

This is what they saw when we arrived. It's called granulation tissue and it's gross!

They were very happy that I called them and that I didn't just accept that "this just happens". Yes, it's common and it does happen but they always try to take care of it and minimize it's growth. The treatment plan has been cauterization (done there at the hospital outpatient office) and the application of a steroid cream 3 times a day. Thankfully, the cauterization was not as bad as I has expected. She cried a little but only because the nurse and I had to hold her arms and legs down. She did not seem to be in any pain. I'll admit I was a bit shook up from the whole experience.

Disappointingly, we had to return to see the surgeon the following week because the granulation tissue grew back. Here she is waiting to get her belly checked out by the surgeon on Friday June 3rd. I was feeling nervous and worried since this was the second week in a row that the granulation tissue had grown back after being cauterized. She on the other hand was happy as can be and loved saying "cheese" for her picture.

After this appointment where they once again cauterized all they yucky tissue that was growing the surgeon gave me four sticks covered with silver nitrate and instructed me that he wanted me (yes, me!) to cauterize any new tissue that grows during the next week. Oh my, talk about stressful, but I did it. It wasn't fun and I was so very nervous but it seemed to do the trick - for now at least. When we returned again on Friday, June 10th the Dr. did not need to do any cauterizing, which was a blessing. He said it looked good. There is however, a significant amount of skin irritation / breakdown that needs to be taken care of. So now we have a few more steps in the daily "process". He is having us put Bacitracin ointment around the button (which right now is the considered the "wound") and then cover it with a mesh like, sterile, non-adhering protective dressing called Xeroform. We then cover that with a dry gauze to help keep it all in. We will return again next Friday for a follow up.

It is wrong of me to say (or shout) I DO NOT WANT TO STEP FOOT IN THAT HOSPITAL AGAIN FOR A REALLY LONG TIME!! I'm just over it! Are any of you thinking what I am thinking? Enough is enough!!! I know it really isn't that big of a deal but it is ONE MORE THING! I hate to complain and I try not to but seriously this kind of sucks. Her poor skin is so red and it just seems to be getting more irritated. I think the problem is that she is a belly crawler and as she crawls she continually irritates the button. I don't really know how that can be addressed - she needs to be able to get around. I think it's fair to point out that Annabelle does not seem to be bothered at all by the button, by the leaking (which I didn't even address in this post), by the skin irritation, etc..... Thankfully, these really are my concerns, not hers. She actually seems happier than ever.

I guess that last line says it all - she seems happier than ever! There really is no question that she is stronger than before she got her G-tube. One example is how she is now consistently getting up on her knees and is climbing up to things. She is almost able to pull herself all the way. She doesn't crawl (yet) in this position, she just puts herself in it and screams really loudly (no joke) the words "KNEES!!!" She wants everyone to know what she is doing and then she claps for herself. She's not shy - she's my daughter :-)



She is also very much enjoying practicing on her parallel bars that we have set up outside.


Here she is walking at her parallel bars - Saturday, June 11th


She is also tolerating her 1 1/2 hours of PT & OT 3 days a week. She is making noticeable progress. Here she is walking with her walker at PT earlier in the week.


I guess it's pretty obvious to say that the positives far outweigh the negatives and that is truly what I need to focus on, but I'm human and that's hard to do some times. I know this experience of Annabelle having a G-tube button is not going to be easy but we all know that most things in life that are worth having aren't easy. Annabelle's health, growth and development is what matters the most and her button IS helping with all of those areas of her life!

By the way, our sweet girl is up 3 pounds!! She now weighs 20 pounds. Yep, those adorable little legs of hers are getting chunky!

There's NO question our girl is LOVING life. She is not feeling sad about her "extras" so I need to snap out of it and fast.

I wonder if Branden is strong enough to throw me up in the air like that? I wonder if I'd love it as much as she did?

Annabelle - I love and admire your zest for life. I hope it never fades.