When The Butler family moved to Maine at the beginning of 2020, they had no knowledge of The Barbara Bush Children’s Hospital (BBCH) or that their son Wesley would soon spend months in the BBCH inpatient unit. Keep reading to hear from Wesley’s mom, Emily, about their unplanned experience at BBCH.

Wesley was a very typical two year old boy- he was on track for all of his milestones, loved trains and playing with his older sister, jumped around a lot and would rather be outside no matter what the weather. Up until September, he was absolutely fine.

Originally I just thought he had some kind of a bug- typical flu symptoms plus a really distended belly. But when he didn’t get better, I took him to the ER. Initially they diagnosed him with constipation and sent us on our way, He seemed mostly okay for the next month but at the beginning of October, he started having the same symptoms. We tried all of the usual things and he continued to do poorly so we went back to the ER. I figured we would be there for a few hours and then be home.

Unfortunately, because his stomach was so distended, the doctors were unable to see with both an X-ray and CT scan if there was something blocking his small intestines and causing all the air to be trapped.  And at two in the morning, Wesley went back for surgery. The surgery was successful in that they were able to decompress his intestines and they were able to take biopsies in order to help with a diagnosis. What they found was extremely unusual- he was diagnosed with pseudo obstruction caused by leiomyositis, which is inflammation of the muscle layer in the small intestines.

This prompted a transfer to Boston Children’s Hospital where after many different blood tests and further looks at the biopsies, Wesley was diagnosed with Celiac disease.  The theory is that Wesley was experiencing a very extreme Celiac crisis which caused the leiomyositis and then the obstruction.  There are only a few recorded cases of leiomyositis and only one case study from the 1980’s that even suggested Celiac disease as a cause for this type of inflammation and subsequent obstruction. Even so, it was the best and only answer for all the problems so we began a gluten free diet, started him on some steroids, and were sent home.

We were home for a week when he started having the same symptoms again- so we went back to the ER! We stayed overnight for observation and by the next morning, Wesley was lethargic, had an extremely high heart rate and was unresponsive. We were moved to intensive care and had a CT scan which was once again unclear. He had another surgery, which discovered that scar tissue had wrapped around his intestines cutting off the blood supply. Unfortunately, he lost over 20 inches of bowel and now has an ileostomy bag. While still recovering in the hospital, he developed the same symptoms once again and a CT scan showed a perforation in his small intestines. Another surgery, ostomy revision and another inch of bowel removed. Throughout this time he had been mostly unable to eat and drink and lost 20% of his bodyweight and needed multiple rounds of IV nutrition.  Finally we went home but the output from his ostomy was high- 2 liters a day!  He quickly became dehydrated and we went back to the hospital.

We spend almost six weeks trying to slow down his ostomy output, with a complicated diet, array of medications and multiple theories as to why his ostomy output is so high.

Finally, we are discharged from the hospital on 1/7/21 after 82 days inpatient.

We’ve been home for six weeks now and everything is fine- we are slowly adding more things to his diet (still gluten free!!), are now only on three medications, have gained back all the weight that was lost and have reasonable output from his ostomy. You would never know he was in the hospital for 11 weeks!

Wesley, Emily, and the entire Butler family never expected to need the world-class care provided at The Barbara Bush Children’s Hospital. Become a Miracle Maker today by clicking the Donate Now button below to help support Maine’s sick and injured kids, like Wesley.

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