A Day In The Life Of A Cotton: First Stuckie and Other Updates

It's been a wild start to 2024. We've had 4 ER trips, a hospitalization, and Lily's first stuckie. In January Rose had a concussion after falling from her bunkbed. Thankfully she recovered from that quickly and it was just more scary than anything. In February, Lily got a bad stomach bug and was severedly dehydrated. She spent about 5 days in the hospital for IV fluids and rest. Then in March, we were eating breakfast for dinner one night. Lily swallowed a piece of breakfast sausage without chewing it at all. We could tell something was stuck because she was trying to bring it up. She could keep fluids down, but not solids so we knew something was wrong. The next morning she still couldn't keep solids down, so I brought her to the ER at Children's hospital in Milwaukee. They did a special xray called an esophagram that showed there was something stuck in her esophagus near the anastamosis site. So they did an EGD that night and removed the sausage. I sent the images from her EGD to her team in Boston. They called to talk about it and said they could see significant scar tissue has formed around her anastamosis again. They said she needs incision therapy and a dilation. The incision therapy is when they make small, precise cuts in the scar tissue to help break it up and allow her esophagus to stretch when they dilate it.

So we are headed to Boston on Monday morning. Her procedure is on Tuesday afternoon and then she will have appointments on Wednesday morning before we fly home later that day. I just wanted to give an update and ask for your prayers. We don't know what this means with her scar tissue reforming. I'll find out more when I talk to the doctor I'm sure. But I'm a little worried about what it might mean. Hopefully we won't be heading back there again too many more times this year. She's been a trooper through it all. She's suppose to only eat soft foods right now to avoid another stuckie. She's done a good job with that mostly. She really misses cheetos though.

Prior to these recent issues, she had been doing really well since our last visit to Boston last June. Her reflux is much better overall, she had very few illnesses (maybe thanks to the vest?), and she's been growing and developing like she should. She and Cora started gymnastics a couple months ago and they're both very excited to start 4K in the fall. I talked to her teacher about making an Individualized Health Plan for Lily at school. I'm hopeful that she won't have too many issues at school with reflux or swallowing issues.

I'll send another update next week after her procedure and appointments.

Love,

Heidi