Milwaukee Day 2: A New Approach

Still here.

To list out the days events in order in a nice blog post would take too long. So here it is:

We are staying another night. That was pretty clear when I went back to the PACU/recovery. I could hear that classic barking cough/stridor that only my boys have from the entrance. I told them Gannon had stridor/upper airway swelling after his last surgery. They used the small size tube to intubation him – a newborn size AND they gave him steroids before he even woke up – he still was croupy and had a terrible time breathing/getting calmed down. Sounded just like croup. They doubled down in the decadron and still no relief. That was enough to keep him overnight, especially because he rebounded in the hospital last time around midnight and needed more meds/treatments.

here’s the link to the first time this happened at the university of Iowa in February.

Gannon will need Botox in his rectum which is another procedure and can be done at university of Iowa – his rectum does not relax and is very stretched out – otherwise everything appeared okay colonoscopy wise – no issues with blood flow or inflammation or obstruction.

Everyone is stressing that his GI issues are only a symptom – something else overall is going on – his muscle weakness is a concern for everyone – Dr Sood is leaning more towards the prune belly variant idea that I suggested last August. He said he could feel his scope move through Gannon’s intestines if he put his hand on his belly. His abdominal walls were “paper thin.”

The general peds GI surgeon (who was AMAZING!!) told me that he suspects Gannon will need some kind of operation in the future ranging from colostomy to just a button on his belly to flush to keep him cleaned out/release gas – he was so so kind – he said he would be honored and privileged to be Gannon’s surgeon and remain on his team.

He says he’s seen a lot of kids butts (it is his specialty after all) but the actual buttocks muscles of Gannon’s are unique – very flat – very low tone – he says that he appreciates how hard I’m fighting for him and emphasized that his GI issues are only a symptom of what is wrong with Gannon.

The swallowing – the walking – the delayed sitting up – the spine that sticks out – the legs that bend funny – the constipation – the big bladder – the big belly – the hernias – the testicles – all of it – they are all just individual concerns – I feel like independently there wasn’t a concern but FINALLY someone cares enough to tie them together – Dr Sood isn’t our answer, he is just treating a symptom of a larger disease process – a disease that involves LOW MUSCLE TONE. Over and over that has been the theme of the day: hypotonia.

They are so concerned in fact, that Gannon is having an MRI of his brain and spine tomorrow. He will need to be sedated but not intubated. They’ve coordinated a neurology consult for tomorrow as well. These people are on top of it.

Gannon held so still and slept for most of his manometry test. Dr. Sood is reviewing the tests and will be giving his conclusion/recommendations tomorrow morning in combination with the neurology and hospitalist team who coordinated this whole thing.

I do have a message for a surgeon who once consulted on Gannon’s case:

Dear Dr. P –
You once told me that the only facility in the world who does motility studies is in Ireland and that the research is very new and not accessible to kids with “lazy intestines” like our Gannon. Well, you were wrong. I found one for myself with a quick google search and asked for the referral myself. Thanks for nothing.
Sincerely,
Kalissa and Gannon
Milwaukee, Wisconsin
(4 hours away from the office we were sitting in when you told me that last October)

Gannon got a bath and ate real food and got all of his tubes out (except IV) and his currently watching blippi on my lap. He’s pooped. My food is being delivered soon but I wanted to hammer out an update quick.

Here’s an example of how Gannon sits/how his legs appear. Just not quite right. He was eating supper – they sent up a fork and Gannon jumped right on it – he wouldn’t use his fingers or let me help him.

It’s all coming together. Hopefully he doesn’t rebound overnight and his breathing is well enough to be sedated for the MRI tomorrow.

Thanks for reading – I’ve actually got a lot of time on my hands between visits and in waiting rooms so I enjoy keeping ya’ll up to date. See you tomorrow!

12 thoughts on “Milwaukee Day 2: A New Approach

  1. Jill Klop says:

    Thank you, thank you, thank you for giving us these updates. You’ve been on my mind all day. I pray that you get some answers for your little Gannon!

  2. El says:

    Hang in there! Really hoping for answers for you all. It’s so hard to not know, and not able to help. You are in our thoughts and prayers!

  3. Becky says:

    I feel so bad for you and yalls little guy! The picture of him legs reminds me of my daughter when she was a baby, she had to sleep in a whatever The brace is called with her feet facing the other way, but it eventually did the job! Hope y’all can find something to help your little one, he is so brave. Bet his big brother is missng him and you!

  4. Anita says:

    Praying for you and that adorable little boy of yours. Praying your doctors get answers and solutions. How strong you are!

  5. Christine says:

    Kramer Strong. Grandpa Kramer is right beside him keeping Gannon and you safe durimg all these tests. Sending prayers for you to get all your answers

  6. Mary Etherington says:

    I am proud to know you, Kalissa! I don’t know any mother who has fought harder for her child!!

  7. Ellie says:

    Reading about all these procedures and watching him struggle makes my mother’s heart ache. I can’t imagine how hard it is for you watching your baby through all this. I applaud your courage and determination to find answers for this sweet boy. I pray you will find some helpful answers.

  8. Elle says:

    Good morning! Thank you for the update. I hope Gannon had a good night without that dang croupy response to anesthesia. Praying for an uneventful MRI and some answers to Mom’s intuition that there is something going on that no one has diagnosed. There is no Advocate more fierce than a fired up RN Mom 🙂 With you as God’s assistant, Gannon is in wonderful hands.

    I hope you got some rest and I’m praying you both have a good day and can get back home to Dad and Carver.

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