08/25/2026
First day of senior year didn’t go as we’d like….it started with senior sunrise but ended with Lilly being admitted to the hospital last night. She has had some sharp intermittent abdominal pain for the past week. Her stomach was swollen and she was having some GI changes. It increasingly got worse and she tried some medicines over the weekend to try to help. Her stomach became less swollen and we thought she was improving. She had her first day of school and called me after to tell me how much pain she was in & it was now in her back and sides. She kept saying that this is different than her normal pain she deals with everyday. We told her to go to the ER if she needed to. She wanted to try to go to cheer practice, but she didn’t make it through it. So she went to the ER & was diagnosed with distal intestinal obstruction syndrome (DIOS) and pyelonephritis (a kidney infection). DIOS is a complication of CF, she’s just never had it. If this doesn’t show you how tough she is, then I don’t know what will! In true Lilly fashion, she went to school all day & cheer with all of this going on, which was causing her a ton of pain. This also shows how quickly things change with CF & how well she hides it!
As of right now, she doesn’t require surgery or a NG tube, but they will reassess that as time goes on. They have her on meds to help move things and continuous fluids. Her blood glucose keeps dropping so they’re keeping her on fluids with dextrose to help with that since she can’t eat. Since she’s 18, she had to go to the adult side & she’s also never been admitted to Mercy Spfd before so that’s been a very different experience for her. Huge shout out to my ER coworkers (specifically Amy, Kaitlyn, Will, Jen & Dr Baker) who took such great care of her, and to my parents, Margaret and Bella who sat with her & took care of the dogs last night since we are out of town! Also, to her BFF Gracie for going to the house this morning before school to help gather her things she’ll need!
Please be praying for her and that this clears quickly (without surgery or NG tube)! We’ll do some more updates as we can and do some updates about how things have been going for her since it’s been so long since we’ve updated.
