Aug 3, 2015

1 Week Post Stoma Closure

It's been a week since Ainsley had her surgeries: stoma closure and g-tube closure on the same day. She's been milking it all week. The girl is clever:

A: "Oh no I can't eat my dinner because of my surgery". (Point to food then headshake and point to neck.)When she ate breakfast and lunch just fine. Turns out she just didn't like the herbs in my pasta.


A: "No I can't stand up." (Headshake then pointing to stomach.) This is done at any and all opportunities. And yet somehow she is able to crawl down the hall at full speed when she wants to.

Like here when she crawled away from me and hid behind the couch to avoid the camera when I said I wanted close up pictures.

It's time to start resuming normal activity. Still, I think it's entirely possible that her tummy is a little sore. I remember how I felt after the c-section post Ainsley's birth. But then I don't think they cut as many layers through for this. I do see a bit of a bump on the left side of where her g-tube was. It's a bit tough there under the skin. I am hopeful that this bulge will go away in time. I think it is due to the extra stitches that were needed on that side to repair the cut they made.

Initially when I first saw the stoma on Tuesday I was very concerned about how it was going to look. At the hospital it was quite sunken in the center. The Steri-Strips were on the outer sides but not in the center and it appeared it wasn't stitched together in the center and that she would end up with a bellybutton scar. The Steri-Strips fell off early, over the weekend, and then I was able to see that there were actual sutures at the skin level which was what I'd expected, they just weren't visible until the strips came off. She had a lot of scarring from the trach stoma migrating as she grew so there was no way the surgery would eliminate all that, so I was aware that part would remain. It's too soon to tell how it will look when it's fully healed, but I am feeling better about how it might look. 

I will say it is FANTASTIC not to be wiping secretions off her neck multiple times a day. After 7+ years of suctioning and another year of neck goo I am SO HAPPY just to have a NECK....with NO maintenance required! Out of habit I find myself going to wipe her neck and then it just feels SO WEIRD that we are done with that. Hallelujah!

There was a bit of a concern because there was air trapped between the trachea and the skin of her neck. When you palpated under the chin, the neck and down toward the collar bone there was a crinkly sound and feeling like there was cellophane under her skin. That meant a leak in the stitches of the trachea. I tried to work the bubbles toward the incision but by Friday it was still there so I called the ENT. They wanted to see her but I assured them I would bring her in the following week if it wasn't better. Sure enough by today it was gone. I am so relieved that it's looking like it healed shut! I told them she came out of the OR looking oddly "puffed up", so I believe the air was primarily from that. Initially we'd thought it was swelling but it didn't behave like swelling. They were worried it was caused by her CPAP which could make it difficult to heal if that were the cause.

During the week I was feeling good enough about things to unpack my trach and g-tube accessory drawer in my kitchen and repurpose it for lunch making supplies. I guess the fact that I still had trachs in there 1 year post decann says something. 

As soon as I can get a bunch of boxes my next step is going to be to unload Ainsley's medical supply drawers and repurpose it for TOYS. No kid should have this many medical supplies in their closet! I will store it in the attic with the rest of her medical stuff through cold and flu season. If she makes it through with the stoma closed then I will have a big job of donating enough medical supplies and equipment to outfit a half decent clinic in a third world country. 

It was nice that E&A were off at camp while she was recovering. It made things easier.

We picked Evie up from "horse camp" Friday. She was put in the advanced rider group simply from attending this intensive camp annually for 5 years. They learned to canter as a group and she looked like a real cowgirl.  Ainsley enjoyed  the show and seeing the horses up close afterward.

Steve and Evie picked up Adrian Saturday morning and now we are all back together as a family.

As you can see Ainsley is back to her happy self. One more week and she can go in the pool.  Hooray! It looks like this is it.....she is officially successfully TUBE FREE! 
Knock on wood.

1 comment:

  1. Hey Susan, I have been following your blog for years. I knew that this day would come. so happy for you and your entire family! what a brave girl Ainsley is!! congratulations and also check out RPM-rapid prompting method of learning by Soma Mukhopadhyaya , it is a teaching/communication method primarilly for autistic people ( such as my son) by works in all populations. i am sure, Ainsley will pick up more communication with that. But she is flourishing and blossoming with "love therapy" which is the best!