Gannon Update + Botox didn’t work + Tuesday AM update

We had a terrible weekend with Gannon.

My poor baby was in so much pain.
For hours we sat on the bathroom floor and I just held him as he screamed and cried.

The Botox injections didn’t work.
We don’t know why.
If anything, everything got worse.
He can really only pass stool if it’s liquid.
He’s so anxious about pooping now that he think he gets even more scared if it’s harder for him to go.

This will now be our third week in a row driving to Iowa City.

Gannon needs to get the Botox injections again and hopefully they work this time or he’s going to have to have a bigger more permanent surgery.

So not only do we have to drive down for the Botox injections on Wednesday, we have to drive down tomorrow (Tuesday) to get him swabbed for Covid.

That’s two hours in a car on the way down there to get a swab jammed up his nose in two hours home.

They will not do it the morning of, it has to be done by 11 in the morning tomorrow so it’s not like we could even stay overnight.

I know it could be worse.
But tonight I’m throwing myself a pity party and I’m throwing a pity party for Gannon.

I’m so mad that we don’t know why he suffers like this.

All I wanted for Christmas was the genetic testing results. They still aren’t back yet. There’s no way to contact the lab and find out the ETA.

I’m just so sick of this. I was trying to coordinate all of these appointments while I was at work and try to rearrange my schedule so I wouldn’t let my team down or my family down.

It’s just getting really hard and I’m really sick of this.
I’m really sick of Covid.
I’m really sick of having to drive to Iowa city.
I hate that he has to have anesthesia again.

But more than anything, I’m willing to do whatever needs to be done so Gannon never has a morning like he did on Sunday again.

TUESDAY MORNING UPDATE: I’m feeling a little calmer this morning than when I wrote the post last night. I was a wreck on the way home from work – it all just kind of hit at once.

The on-call Gods are smiling upon me this morning and for some crazy reason – I’m on call! Craig is already on the way to Iowa City with Gannon, carver refused to wear pajamas for his pajama party, and I’m just chilling here on the couch typing this blog post.

I’m doing some more research on Gannon – there’s a condition called neural intestinal dysplasia which has a lot of symptoms that Gannon has. I’m reaching out to his GI team to see if we can do more imaging while we are down there as well. Maybe there’s a blockage higher up? Maybe we need to reach out to Milwaukee again?

I found another little friend named Anikin who struggles with much of what Gannon is struggling with. I reached out to Anikins mommy so maybe we could touch base. I find support groups extremely helpful.

I did get a message from the genetics counselor who said Gannons results should be in the next 1-2 weeks. I didn’t even know that it was a place you could call – I just know our blood samples are somewhere on the east coast.

Anyway, that’s all I know. Just trying to chill out. Thanks for all the support guys.

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