Today we met with the specialist, Dr. Manini a top Pediatric GI Specialist!
He is FANTASTIC! We are truly in the right place, and got the doctor we needed for his disease. He’s seen many cases that come from all over. Although it’s very rare in children, and the future is unknown, he is confident we can come up with a treatment plan that will last many years. Walker had a Fluoroscopic Esophagram Imaging Exam today. They took some photos of his esophagus and then he had to drink a barium swallow so we could see the dye going down. The results confirmed that his esophagus is closing and food/liquids take quite sometime to empty into his stomach. At the time they are unsure of what is causing this; the surgery wasn’t a success, possibly the surgeon didn’t cut the nerves deep enough, the stomach wrap was too tight, etc. After his test, we got to enjoy and explore the rest of the day! We grabbed some lunch at the hotel, then took an Uber to an Escape Room! We had so much fun and ESCAPED! We may have needed several clues and 20 extra minutes, but it took our minds off of tomorrow and had many laughs. Tonight we ate ice cream for dinner, because we only live once, played UNO, and heading to the Hot Tub before settling down for the night here soon. He’s in good spirits but we can tell the nerves are brewing for tomorrow’s test. Tomorrow he has his manometry test, which they SHOULD have done the first time around. This is a true ‘Road map’ for Achalasia patients to see how much of the esophagus has ‘died’ and what TYPE he is. This unfortunately is very uncomfortable for our boy. He has to fast tomorrow prior to the procedure. It will take place in the OR, and while awake they stick a tube down his nose, into his throat and esophagus down to his stomach. If he can’t endure this procedure they will resort to putting him under general anesthesia. We are hoping our boy can remain strong and get it done!! Then we can enjoy the remainder of the day. Thursday we will meet back with the team and decide our treatment plan to get him well!!!! Our options at this point will probably be a balloon dilation to open up the esophagus OR surgery again. Keep him in your thoughts tomorrow as he endures this procedure! #WalkerStrong
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