Tristan’s Story

Site created on July 8, 2021

Hi, my name is Tristan McGregor. I was born on June 3rd, 2021 at 11:32 am, weighing 7 lbs 3 oz and 18.5” long. My mommy and daddy were ecstatic at how perfect I was. A couple of hours later I started throwing up stomach bile and was rushed to my local children’s hospital where numerous tests were run on me to see what was wrong. Tests came back days later and it turns out I have the same disease my daddy had - Hirschsprung's. I went in for surgery on June 8, 2021 at only 5 days old to see how severe my Hirschsprung’s was. Turns out I have the rarest and most severe form of the disease. None of my colon, large intestine or small intestine has any ganglion cells which are what makes the bowels relax and contract and be able to go to the bathroom. So since I have none, I was given an ostomy at 50 cm of the small intestine, a g tube for feedings and am on TPN for nutrients. I will be on these for the foreseeable future until I get older and explore options for my best quality of life, likely receiving a multi organ intestinal transplant. 

Thank you so much for reading my story. If you feel so inclined to donate, please know you’ll be helping me and my family out for the day to day struggles including daily medications and supplies, medical bills, home health care, OT and PT therapy, specialist visits across the country, and the eventual need for my multi organ instestinal transplant. If you cannot donate, please share my story. Thank you again for your time and support.



https://gofund.me/99421e78

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Newest Update

Journal entry by Jennifer McGregor

Well it’s been a really rough road. Tristan ended up having to receive a blood transfusion 11/6 and it was very, very painful for him. Then Wednesday 11/8 Tristan started to look so much better, his ostomy started working again and had almost 500 mL out… until it didn’t. Thursday we were slated to go home, but Thursday morning he started vomiting and his ostomy output slowed way down. We watched and possibly were going to go home Friday, but continued vomiting so then it was looking like Monday, as his vomiting had slowed down. Until Sunday night. I went to the Ronald McDonald house to do some laundry and when I returned I changed Tristan’s diaper and noticed poop in the folds of his diaper (but none out of his ostomy). His incision started leaking poop which turned into a geyser of poop shooting from his incision. Dr. Mercer performed a second surgery Monday 11/13. He said his incision opened and acted like a little blade that slit his intestine open about 2 cm. So now we’ve back peddled recovery wise. They swabbed his abdominal fluid and stool during surgery, which came back positive for bacteria. We’re waiting to see which antibiotics are most appropriate to this specific type of bacteria and will come up with a game plan from here. Likely looking at being here until mid week next week and then possibly completing antibiotic doses at home before returning for a follow up with Dr. Mercer a week or two later. Please keep us in your prayers as this has been so hard on Tristan and more than we ever thought he’d have to endure following surgery. Hoping to a smoother recovery this time and going home to be with sister very soon. ❤️
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