It’s been a long ass day ya’ll. I mean that.
We were up and on the road to Milwaukee (4 hour drive straight East) by 4:00 am.
I was so thankful there are Kwik trips all along the way to Milwaukee. I had to stop for gas on the way and I had to use the bathroom so Gannon came with me! Can you imagine how difficult it is to hold a child the entire time you go to the bathroom and wash your hands? It was great. He was still in his jammies. People were judgy. It’s fine.
When we finally got here, there is a TON of construction so I got lost in the parking ramp and the whole time I was trying to find my way there was a jack hammer running in the loud echoey parking ramp that made me and Gannon both a little anxious.
Finally got in, checked in, with all the bags, just me and Ganjo, and that was a ride. A dad passed me carrying a single empty infant car seat. HA! Only a dad could do that – no diaper bag, just whizzed right by no problem followed by me with the toy bag, the clothes bag, my fanny pack, and the stroller loaded down. I’m sure it was a sight to see.
Gannon got some meds to help him relax (intranasal versed) which was great. He was so giggly by the time we were starting the IV and putting the tube down his nose. It went okay, he wasn’t completely asleep by any means but he won’t remember anything. That was all great and fine. The flight team was a dream and got the IV no problem.
So began the Go Litley. They have to clean Gannon completely out just like adults do for their colonoscopy. That sucked. The first two hours wasn’t bad and then all hell broke loose.
Gannon isn’t allowed anything but water apple juice or jello. The go litley goes through his NG tube. On top of that they had to give Gannon an enema. This is the last happy picture of Gannon I have from today. Things went downhill after this.
Guys, the orange jello came out the other end looking like Intact orange jello. I thought he puked – nope. That’s all I’m gonna say. It was terrible.
I went through three outfits, so many bed changes, my clothes are in the laundry in the parents lounge. Gannon would cry whenever another wave of diarrhea came. We are going to be continuing the enemas HOURLY on top of the go litley going in at 300 ml/hr.
Then Gannon’s IV came out. UGH. The flight team, again, amazing, came today start another one only this time no versed. Gannon can’t have any pain or sedation medications at all or it will skew his studies tomorrow.
So so so many doctors have been in to see Gannon and you guys, they are CONCERNED. They think that all of these issues are all tied together! They want to investigate it! They want to do more imaging! They believe me and can’t believe no one else has been able to put together the puzzle. There is a lot of talk about a neurology referral and possibly an MRI of the spine to check for abnormalities that could be causing all of these issues. However, Gannon really only was referred for the motility testing, not neuro concerns so there’s some red tape there. I say bust through the red tape and give us some answers.
Gannon’s belly is so distended and they are working on that right now. They think there is still poop stuck up in there – that everything else is coming around it and that’s why his belly is getting more distended instead of less distended as we clean him out.
Here’s a picture – those lumps? Those are literally his bowels, right under the skin. Everyone comments that his abdominal muscles are separated but they actually are concerned about it today. When should that go away? When does that get better?
He’s finally asleep but it was so hard to get him to sleep and for him to let me put him down. We will see how the night goes. I’m hoping it is restful. It’s already been a long ass day.
A year ago today, I was spending my time with my Dad in his last few hours on earth. At 12:15 am, it will be one year since I last heard his voice. I think the kindest thing anyone can do is reach out on death anniversaries and so so many people have to let us know that he isn’t forgotten. Thank you.
Tomorrow is the big day – what we’ve been waiting for – the manometry study. I’ll explain more later. For now, it’s only 7 but I’m heading to bed. Who knows what kind of sleep I’ll get tonight (and yes that is a pull up over a diaper, the CNA thought of that!)