I know you’ve all been wondering about Gannon.
I finally got the call from Milwaukee today (4 days later than I expected) that they have a plan of care set in place for Gannon when he’s admitted to Milwaukee for further testing.
On Sunday, we will make the drive to Milwaukee and stay the night.
Monday he will see Dr. Sood – the best of the best have learned from him – I’ve read a lot about him in my Chronic Intestinal Pseudo Obstruction group. This will be a clinic visit.
After the clinic visit, Gannon will be admitted to the hospital for a full bowel clean out (think like prep for a colonoscopy). That should all take place on Monday.
Tuesday Gannon will go into the operating room.
They will do an EGD which is a scope that goes into the esophagus, stomach, and the first part of the small intestine. They will also take biopsies.
They will do a colonoscopy and take biopsies.
They will then place the manometry tool. It has been described as a wire/tube that goes all the way from the mouth through the anus. Here’s the best explanation I can find:
“The tube will be connected to a portable manometry cart and computer. As your child’s colon tightens around the tube, the flow of water stops, and there are changes on the computer screen. Your doctor views this information after testing is complete.” – https://www.cincinnatichildrens.org/health/c/colonic-mano
It looks like Gannon won’t be able to get up, sit up, eat or drink during the testing which is going to be awful. I have no idea how to keep him in bed or lying still for that long. OBVIOUSLY the motility nurses do this all the time so they will know but I’m nervous about that. They can’t sedate him for the duration either because that can skew the testing.
After that, the test takes about 7 hours inpatient after he wakes up from surgery, we should be discharged on Tuesday pending the results of the test.
Carly, the access coordinator who has been so wonderful to us, is coordinating us to stay in the Ronald McDonald house while we are there which is so so sweet but poor Gannon. I don’t know if I’ll be able to leave him. I’m all he knows.
Carly also said the reason it had to be in April was because they needed to coordinate services. It sounds like after further investigation they are no longer going to have those specific testing in the plan of care so we may get moved up “much sooner.”
So in the meantime, how is Gannon?
I’m keeping a diary of his symptoms. I write down on a little calendar how often he throws up or other issues we have.
Gannon is only on formula now. We offer him a cracker here and there but if he eats too much regular food, like clockwork, he vomits. Hopefully Milwaukee can offer some insight on how to move forward with his diet based on our test results.
Gannon is happy. His belly is pretty big this week but happy. We feel so sad leaving him out of supper because he can’t eat table food. We still pop him up in his tray to sit with us any way. The other night we taught him how to “screech.” You can find that video on my Pink Shoelaces Facebook page. It was SO CUTE! HERE IS THE LINK:
Our dearest Gannon, we are going to get you figured out some way some how.
Thanks for thinking of us, My heart is so heavy thinking of you dealing with all this. Poor baby…. both of you!
ALL of you
You are a great mama bear advocate for Gannon. I things like this show the gaps I’m medical care/knowledge and certainly need a strong advocate to make sure the right medical professionals get on the case. Keeping your lovely family in my thoughts.
No doubt about it, this week is going to be difficult for you and Gannon. Lean on the knowledge of the motility nurses, just like you want your patients to lean on your knowledge. Praying for you all!
Prayers for safe journey traveling and medical staffs knowledge to figure out the issues. God bless and be along side your beautiful family.