A Step in the Right Direction – 9/24

It only took me a week to get this all written up but this was another long day of appointments (as you can tell by the length of this post)! Surprisingly, it was a very productive and encouraging day. Here’s how Averi felt about the day’s events:
ENT
First, we drove all the way to Dublin (an office 45 min away because there weren’t any appointments available at the hospital) for an ENT follow-up. We met with Dr. Wiet, the doctor that did the scope. My goal was to not leave this appointment without a date for Averi’s surgery (to sew up the laryngeal cleft). He said that her chest incision looked great and he would have his secretary call us to set a date. Yipee!

I also asked him about her failed hearing test on her right ear. He sent me to audiology next door to test for fluid. I was worried that this would take too long and we wouldn’t make it to the next appointment at the hospital (another 30 min drive) but the wait wasn’t too long. The audiologist blew air into her ears to test if her eardrums responded and both ears looked good, meaning that there is no fluid behind them. During her last test, there was fluid in her right ear, which could be a reason for a failed hearing test.

Dr. Wiet said that he wanted to retest her hearing and that they could do it during the surgery’s anesthesia, when they know she will be asleep. This was great news because a hearing test consists of depriving your child of sleep so that they will sleep quietly for the 45 minute test where they have sponges shoved in their ears. Now we can kill two birds with one stone.

GI
We then drove to the hospital for our first GI appointment, you know, the referral appointment that was made about her pooping blood the first week of August. My goal for this appointment was to get some answers about her G-tube. Since surgery put in her G-tube, they have to do all the follow-up. I have talked to several doctors about getting a referral for GI to follow her G-tube and it can’t happen. The GI doctor that visited her in the hospital even said he couldn’t answer any questions.

I explained to Dr. Punati that Averi started pooping blood, along with diarrhea and crankiness, stopped when she was put on Alimentum, and hasn’t had anymore since I went on my total elimination diet (no dairy, eggs, soy, wheat, nuts, or shellfish). She said I could continue adding foods back in every two weeks (I already added wheat this week) until we figure out what I can’t eat.

She also said that the blood could be from trauma to her stomach from the G-tube (now really?). Everyone in surgery told me that blood from that high up her GI tract would be black but she said that Averi’s system is so small that it could still be bright red when it got to her bowels. So, she is going to do a scope of Averi’s stomach, also while she is already out for the surgery, to see her tract from the inside and find any damage. Finally! Now we’re killing all kinds of birds with that stone. :)

She also actually looked at Averi’s stoma, suggested I put Maalox around the site to help keep the acid from irritating the skin, told me how I could clean the inside of her tube (with Sprite), and changed her reflux medicine from Prevacid to an even stronger medicine called Zegerid. She answered all my questions and never once mentioned that it wasn’t her G-tube. Halleluiah!

Surgery
The day was going well and we had yet to be late, but we still had our surgery appointment. I was not leaving there until someone actually took out her G-tube and looked at the red tissue bulging from it, even if it was just to tell me that it was in fact granulated tissue (beefy looking scar tissue that starts to build up in response to trauma).

We went in and Dee, Dr. Teich’s nurse that knows us by name because I have called her so many times, looked at me and said she was feeling rebellious and was going to measure Averi for a Mickey button. Wow! Every time we go there they always tell us that she’ll get a button “next time;” well it finally happened.

This has made all the difference! The Mickey Button is like a flip top for her stomach. It just sticks out a little bit and can be closed so that she can wear regular clothes that don’t open down the front for the tube to stick out.The tube for her continuous feed is bent and rotates 360 degrees, instead of having a tube sticking straight out that gets pulled on and irritates her skin. It is measured for the thickness of her stomach (the second smallest size they make) so it fits a lot better and won’t leak so much. There is even a medicine port on the side so we don’t have to stop her feed every time she needs her meds. It’s the small things in life that make you happy! :)Overall it was a great day and it looks like things are starting to move in the right direction!