Milwaukee Day 2: Overnight and Pre-Op

Here is the text I got from Gannon’s surgery nurse. P is for Paul and he’s very nice.

Everyone is so great here. It’s a wonderful experience.

I showed Dr. Sood the picture from last night when you could see his bowels just under his skin and he said that is not normal and he expects to find a diagnosis with the tests today.

Gannon got more versed (relaxant) on his way back to the OR and I got to see his smile and hear his giggle for the first time since yesterday morning.

He is back right now getting a colonoscopy, an endoscopy (upper GI scope), biopsies, a Pena stimulation test and manometry wire placement.

It was a tough night with even more enemas, replacing his NG tube again, another X-ray, so so many blow outs.

We had to attempt to replace the NG tube probably 5 or 6 times. We don’t even know how it got out. The nurse and I were talking one minute and we looked at him after he gagged and it was out.

It was a terrible 45 minutes. It just would not go down and would coil out through his mouth. We ended up having to squirt water in his mouth while holding him down and placing the NG through the nose so that he would swallow the tube and it would go in the stomach. If it didn’t work (which happens) he would cough and gag and sputter and we would have to start all over.

He was screaming so hard and couldn’t relax during the enemas that the water wouldn’t go in. Every time we laid him flat he would scream because he thought he was getting another enema. It was TERRIBLE.

I’m exhausted. I’m eating my omelet in the waiting room with all the other nervous parents. I feel like you can just look at someone and tell if they are a parent of a child here or not, we all have that’s same tired, anxious look.

We might be released today, we might not be. We will see what the tests show. I know we will be here until at least 4 pm. Gannon will have a tube out of his mouth and a tube out of his bum. The wires loop through his bowels and see how his bowels work. He has to be hooked up to the machine for several hours – at least until 4.

Here’s a video about manometry, I know is is a hard concept to wrap your head around.

Anyway, that’s what I know. I’ll update when I can. Thanks for reading. If you missed yesterday’s post about Day 1 in Milwaukee, read more here:



  1. Cheryl
    June 2, 2020 / 1:53 pm

    It must be a hard day for you. Prayers for both you and Gannon are enroute!

  2. Traci Kienberger
    June 2, 2020 / 3:04 pm

    Sending healing thoughts, and lots of prayers for the both of you. ❤️

  3. Elle
    June 2, 2020 / 3:13 pm

    You are so sweet, under all this stress, to update us. Praying for answers through today’s testing and a successful manometry study.

    Dear Lord, grant Gannon the strength to tolerate the day’s work without removing any tubes/wires so he can avoid having reinsertions. Bless this little boy and hold him in YOUR HANDS. Give him Mom the comfort she needs on this already difficult day. Amen.

  4. June 2, 2020 / 3:59 pm

    Oh poor little guy – what a rotten couple of days for him. And Mom!! Good luck – hope you get answers!!

  5. kara
    June 2, 2020 / 5:05 pm

    May you get some answers that you so desperately need. Praying for your little family. 🙂

  6. Carmen
    June 2, 2020 / 5:09 pm

    You are a tough cookie to be able to do o this. I know it’s so very hard to see him going through all go this. Praying it will all be worth it and you find the answers you’re looking for.

  7. Lori Douglas
    June 2, 2020 / 5:24 pm

    Hang in there! I can tell that last night was beyond rough. Today is a new day hopefully with answers!
    Gannon is little so time will erase last night ‘s memories. I too had my son in for surgery at 4 and 6 months of age for steroids injection in a hemangioma in the orbital. As a parent you feel helpless but prayer gets you through. Your family is in my prayers

  8. Connie
    June 2, 2020 / 5:32 pm

    Thinking of you all. Praying for answers.

  9. Susan Stringfellow
    June 2, 2020 / 9:22 pm

    All I can say is— poor baby—- and, poor mommy. Hope you finally get a definitive answer.

  10. Ellie
    June 2, 2020 / 10:56 pm

    Praying you get answers and a plan.

  11. Donna
    June 3, 2020 / 10:59 am

    Thank yo so much for your update – we really do appreciate you doing this. Keeping all of you in prayer.
    Love and prayers

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