04/15/2026
Kayleigh Update:
I feel like a broken record, but we really need prayers for Kayleigh right now. It seems like no matter how hard we try we just can't seem to catch a break. I keep looking for things to turn around and get better, but instead we're faced with new obstacles, bigger issues and scarier situations.
For months now we've watched Kayleigh's fatigue and physical symptoms worsen. She's struggled with Excessive fatigue. Some days she sleeps 16-20+ hours per day. we even had one episode where she slept for 36 hours. These episodes cause extreme confusion, agitation, slurred speech, and complete memory loss from the day's events.
She had an episode like this on Friday when she was very agitated and extremely tired. I picked her up from school and took her to Complex Care and unfortunately all we can really do is let her rest and sleep the fatigue off. Unfortunately, days like these she loses an entire day of her life because she doesn't remember anything from that day. Then we had another episode yet again on Monday. Considering we just had one on Friday then again on Monday we went back to Complex care. This time we ran some additional testing to make sure we weren't missing something. Part of that testing was a UA (Urinalysis) to make sure she didn't have another UTI coming on.
The good news was NO UTI.
The bad news was we discovered she's spilling bilirubin into her urine (This is never a good thing).
Because of this her doctors ordered lots of blood work that needed done today- STAT!
unfortunately, these labs were NOT GOOD NEWS! They revealed some very SCARY and Crazy elevated Levels.
Her AST is 602 which is 23 times the normal range (Upper end of normal is 26). Her ALT is 510 which is nearly 10.5x the normal range (upper end of normal is 49). She also has several other labs that are super elevated. All signs that her Liver is under significant stress right now.
Tomorrow Kayleigh and I meet with a new Hepatologist- Please pray this appointment goes well and that we can get a good plan in place to hopefully get these numbers down!
We also need prayers for the success of Thursday's Care Conference. This conference is scheduled following the cancellation of Kayleigh's g-tube placement (Which with recent excessive fatigue and bouts of dehydration would have been extremely helpful in keeping her safe and healthy). Its also to discuss the communication breakdown and the brushoff we got the end of February that landed Kayleigh Inpatient. I already feel like I've gone 10 rounds with the hospital over this. I really need this to be resolved at this point.
I can't end this update without screaming to the rooftops how incredibly proud I am of her!!
I'M SO PROUD!
With Kayleigh's medical PTSD we always try to stick to her care plan to provide consistency, predictability, and routine to her care. Part of that care plan is familiar faces and the companionship and support from Marty the facility dog. Unfortunately, Marty wasn't available today. Needless to say I was a bit concerned- but she ROCKED IT! She got her labs ran with a smile on her face and not a single tear. I am beyond proud of her. She has come a long way from where she was at in January when it took 4 people holding her down.
