Tubie Changes...UGH!!!! (video at the bottom)

I've really been struggling the last week or so...do I really want people to see EVERYTHING we deal with?

The plan was simple...I thought it would be neat to show our family and friends a video of Ava's tubie being changed out. After all, this is something we do every 3 months, it's part of our lives, it's part of Ava's life with a g-tube.

I don't hide the fact that I have a love/hate relationship with tubie changes. It's always nice to have a clean fresh tubie. After awhile, the valves wear out and the inner parts of the tubie get dirty. Most of it can't be cleaned and you just have to deal with formula getting trapped in the mechanics of this life-saving, simple device. So I LOVE the newness after a tubie change.

However, the first one I ever did ended badly. I removed the old tubie easily enough, and I actually put the new one in without a problem. It was after inflating the little balloon inside Ava's stomach that I realized the tubie wasn't long enough and it was compressing the granuloma on the outside. As soon as the balloon was filled, Ava screamed and sobbed and kept grabbing at the tubie. There was a look of shear panic and terror in her eyes as she kept grabbing and arching trying to stop the pain. Imagine putting on an earring and pushing the back piece on as hard as you can...OK, actually, imagine the hole in your ear being a huge infected mess and THEN putting in an earring and pushing on the back piece as hard as you can. Sadly for Ava, this was all happening around her tummy. It was truly excruciating!

I deflated the balloon and through Ava's fighting I was able to pull the tubie out. She calmed down almost immediately. Great, I had stopped the excruciating pain, but now I don't have a tubie in place to feed her. Dozens of scenarios raced through my mind, but the most obvious one was to put the old one back in.

Oddly enough, she stayed pretty still for me as I poked and prodded her tubie track. I tried and tried... but where was the track? I couldn't find it. I kept trying, but the granuloma had gotten pretty angry and seemed to swell and block the track opening.

The second logical choice was to take her to the emergency room and have it replaced. In theory, you have about 12 hours before the track starts to close, but no tubie mom wants to go longer than 1-2 hours without that vital little opening secured.

Ava and I met Mike at the closest ER. After they admitted us AND we waited over an hour for the doctor to examine her, the hospital realized that they weren't equipped to handle a pediatric g-tube emergency. We were discharged and referred to the children's hospital that was half an hour away. The clock was ticking and we were about 4 hours without a tubie. I was starting to panic. My hands were shaking and clammy and I was feeling out of breath.

The children's hospital tried to place it with the fluoroscopy (moving x-ray) but had no luck. They had to take her to surgery to locate the track and replace the tubie. Ava was crying as we walked back into the surgery area with her. The anesthesiologist quietly took her from Mike's arms and with a quick, "We'll take good care of her," they were gone. Her sweet little eyes pleading with us through tears as the team whisked her away. Once again we were helpless... and, for 30 minutes, my heart stopped beating.

Finally, the radiologist appeared in the waiting room and said that the track was still there and open, but it was a struggle for them to find it. The granuloma had all but sealed off the opening.

The tubie was back in. Ava was waking up. She did fine. My breathing slowed. My hands steadied. My heart started beating again.

So, back to my struggle.

If the feeding tube has been in for awhile and the track from the outside to the inside is "healed" and well established, the process is easy. Most tubie moms do it themselves to avoid yet another trip to the doctor. We also find that our kids are much calmer in their home environment than in the cold and sterile doctor's office. I've changed a few over the year and a half we've lived with tubie... but with each tubie change, my hands shake, my breathing quickens, and my heart stops beating for that minute or so it takes to change it out.

I changed tubie last week. Mike took the video and Zoe held Ava's hand. Ava was a bit upset to begin with. She didn't want to do it and was nervous after all of the granuloma burning we've had to do lately.

Mike starts the video camera and I show the tubie and explain how it works and what I'm going to do. I deflate the balloon on the old tubie and then reach over to get the new tubie. I then gently pull the old tubie out of her stomach, slide the new one in, and Ava grabs my hand and manages to pull out the new tubie. She starts to panic, she's grabbing my hands and screaming "NO MOMMY!" "NO TUBIE!". Zoe starts crying and screaming "I GOTTA GET OUTTA HERE!". I'm trying my hardest to get the new tubie back in, but Ava's gotten so scrappy. She's such a fighter that I can't wrangle her AND get the tubie in.

Mike immediately puts down the camera and helps hold Ava down while I finally get tubie in, get the balloon inflated and get the new bandage on. When he turns the camera back on, we're all a little out of breath and shaken, but the new tubie is in and secured.

Within a few minutes, after lots of hugs and kisses and cuddling, Ava and Zoe run downstairs and play.

I wasn't sure I should post the video. It's hard even for me to watch Ava fight and scream... especially knowing she's fighting and screaming at me. It's weighed heavy on my mind. On the one hand, it is a small glimpse into our lives. It's a glimpse of the horrors that we have to go through... but I'm not sure this is a horror that people need to see. It's upsetting to watch a small defenseless child fight so hard...

In the end, after a lot of thought, I've decided NOT to post the video... instead, I'm posting a video of Ava talking about her tubie. It's a better snapshot of how this has affected her. I hope you are able to see what an amazing child she is.

("stick" is the silver nitrate stick I use to burn off the granuloma)