Gannon Joseph and the Great Big Belly!

I said Gannon was doing better. He was doing much better. He went a whole 24 hours without throwing up last Thursday. But, Gannon is not better.

I want to preface this blog post with this: I know Gannon isn’t okay. We are working closely with his GI team. This include referring him on to a much more specialized care team. I know I need another opinion. We are working to get one. These things take time. I’m trying so hard to be patient.

Gannon has tummy troubles. If you are new to the blog, you can catch up on Gannon’s roller coaster here:

http://www.thepinkshoelaces.com/gannon-joseph-friedman/

And here:

http://www.thepinkshoelaces.com/gannons-big-day/

And here:

http://www.thepinkshoelaces.com/gannons-tuesday-appointment/

And last Thursday’s ER visit:

http://www.thepinkshoelaces.com/a-morning-in-the-er/

These will bring you up to speed.

Gannon began vomiting on December 29th. He would throw up at least once a day – sometimes up to three times a day. He had his ER visit, the next Monday he was STILL vomiting. We took him back to the doctor, blood work showed things were improving but now his belly was so big and distended.

Our primary doctor (who we LOVE) said he had an ileus which means a part of his bowel is so big and stretched out and full of air that it isn’t moving food through properly. There isn’t much to do about it but wait for it to pass. He was not “obstructed” but very slow moving.

This is the tube Gannon is set in for his xrays. He used to fight and scream but he’s pretty used to it by now. He’s looking at me like “really mom?” An xray confirmed that yes it is an ileus.

He still continued to vomit on and off through the week. He was eating table food SO WELL before he got sick. Now he sometimes couldn’t even keep formula down and we would give him apple juice or pedialyte for the rest of the day to rest his bowel.

Then last Saturday Gannon threw up again and his belly was even more distended. We sent Carver and Gannon to Grandma and Grandpa Debbie’s for the weekend. Gannon did pretty good there.

On a side note, Craig and I are planning AT LEAST one night a month where he goes to hang out with his buddies and I hang out with my girl friends. That was this weekend which was super fun! I think time apart is equally as important as time together!

Gannon came home on Sunday with a big huge belly. I was worried sick about him. I gave him his nightly miralax and sent him to bed. He was a bit wheezy (which isn’t uncommon) so we gave him a breathing treatment. Monday morning came and his belly looked like this:

I called his GI doctor and I told them I needed him to be seen. They are fitting us in today (as you’re reading this) we are on our way to the University of Iowa. Her and I have been emailing back and forth – she recommended being seen locally and getting an abdominal xray so we did. My amazing sister Kelli went to my mom’s house, picked up Gannon, and took him to the doctor.

When someone needs to poop, it is obvious on xray. The treatment for that is simple: POOP. Gannon’s bowels are full of air. FULL of air. The treatment for that is not so simple. I gave him an extra dose of miralax AND a glycerin suppository. It is very obvious Gannon doesn’t have any poop left to poop and yet this is his belly yesterday morning:

I chatted with his GI doctor this morning and she said we can hold off on any more stimulants until he is seen. It’s clear this is gas deep in his bowel and not an easy fix.

They told us to pack an overnight bag just in case. I’ll update what I know when I know it.

Gannon is really uncomfortable when he lays flat. He’s got a cold going on right now too. He’s very clingy and fussy. Other than that I don’t think he is much pain.

Next steps include a referral to Children’s of Milwaukee. It’s about 4-5 hours away. He needs something called manometry which measures the peristalsis (or the waves) in his intestines throughout his GI tract. They have an incredible motility center. I’m not sure how long the referral will take but I started the process yesterday.

We will also be requesting a nutritionist/dietician referral to see how and when it is safe to advance Gannon’s diet again. We also think he needs a referral to genetics to see if they have any insights to offer.

If Gannon has what I think he has, chronic intestinal pseudo obstruction disorder, we’ve got a long road ahead of us. He would be 9 of one million kiddos. We already know he is one in a million to us!

I’ve joined a support group on Facebook for this condition which has been so helpful and encouraging. I want to make sure I’m giving Gannon the best care in the country – even if that means driving hours on end. The people in the group are experts and have been so insightful.

I’ll keep ya’ll posted. Have a good Wednesday!

To be continued…