Monday, February 6, 2012

Tubie Friends

I participate in a forum designed for parents of children with complex medical issues (parent2parent), which has been a lifesaver for my sanity. They have forums for children with ridiculously severe reflux, forums for kids with respiratory issues, forums for kids who have many issues but no comprehensive diagnosis, and forums for tube-fed kiddos (among others).

When I mentioned that we were moving forward with the fundoplication, I received an email from one of the fabulous moms, who offered Nolan a Tubie Friend. Tubie Friends is a wonderful group of "surgeons" who place feeding tubes into Build-a-Bears (and other stuffed toys), then ship them to a child who will be getting a feeding tube. The toys are free, and the parent requesting the Tubie Friend pays the shipping cost.

I was still bewildered by the news of the pathology report and our solid decision to proceed with the surgery, and her email of support and kindness was very needed at that point in time.

As a mommy, I am at a complete loss for how to talk about the surgery with Nolan. It is too soon for him to know that he is going to have surgery, since it is an entire month away. At some point, however, we'll have to discuss it with him. We can't have him waking up and discovering a plastic valve jutting out of his stomach without a prior explanation.

How in the world do you explain a g-tube to a four year old?

Nolan's Tubie Friend has made our job as parents much, much easier. Nolan still knows nothing about his upcoming operation, and we don't plan on telling him until we are only a few days away from the actual event.

His Tubie Friend arrived in the mail on Saturday, and we gave the toy to him on Sunday morning.

Nolan was delighted, and asked what the "plastic thing" was in the puppy's tummy. "It's a button. The puppy has reflux and a sick tummy, and the button lets him get medicine in his tummy or his mouth."

Nolan immediately connected the extension set to the Tubie Friend and gave the puppy "Nexium."

He played with the button for quite some time, until he was satisfied with how it worked.

He also gave his Puppy Nexium in the more traditional way. He played for quite some time with the syringes (already a big part of Nolan's life with his daily meds) and with the main valve on the MicKey button. Tubie Friends outfits the toy with the exact type of g-tube or j-tube (or g-j tube) the child will be receiving, so Nolan's has the MicKey g-tube.

Nolan named his puppy February.

When we get closer to the actual surgery (probably a few days out), we'll start talking to Nolan about the fact that he will have a surgery to fix his tummy. When he wakes up, he'll have a button like February the Puppy.

Because of the Tubie Friend, the idea of a "button" will be less strange and less scary. We can demonstrate things like tube flushes and balloon fills on the puppy before it is done to Nolan.

The Tubie Friend has helped this scared Mom and Dad, too. We're able to see what it looks like before it is placed in our son. We can see that it isn't all that big, and it is simple to operate.

To all the surgeons at Tubie Friends, we love you, and thank you from the bottom of our hearts.

You have made a really difficult time in our lives a lot easier.


Kyla said...

So cool! KayTar was 3 when she had her tube placed and for the life of me I can't remember how we explained it. I do remember we described her tonsillectomy as "installing a frog trap"...because when she would get strep, she would cry, "There is a frog in my throat!" So we stopped those mean old frogs for GOOD! ;) (I spoke too soon, I found a post where I wrote down how I explained it to her!

I'm sure Nolan (and the rest of you) will do great with it. It felt SO HUGE before she had it, but it really was not as different or frightening as we feared.

dlefler said...

Kyla, you have no idea how much I appreciate your sage advice with this situation. I'm off to read your blog post - KayTar is a huge inspiration to me because she's so smart and funny - it is a relief to see kids doing so well!

Herding Grasshoppers said...

Oh Lean, that is AWESOME!

Kimmy K said...

Speaking from experience as an RN who deals with post-surgical kids, it is usually the mommies who are worried and stressed out and the kids who think their button is cool/awesome/weird, etc. I love, love, love the tubie friends, what a great idea. Before you know it, Nolan will be asking to squirt chocolate milk or some such 4 year old nonsense into his tummy!

Lucas'Mommy said...

How awesome! What a great outreach program!

xraevision said...

I have seen this idea for other pediatric surgeries - fantastic! I love that Nolan played doctor with his stuffed dog, knew exactly how to help him and named him February - the last part got me choked up. That he has an attachment already to the dog and the idea is so promising!