16 Oct Update
Keegan slept better last night, which is a big relief. They stopped his IV fluids yesterday in the early evening because he drank a bit of Pedialyte with no vomitting. However, he wouldn’t drink the formula, and he is now back to refusing even Pedialyte. If you even start to come near him with a bottle or cup, he screams, even if it’s empty. He busted his IV late last night by crawling onto his hands and knees every time his tummy cramped up. They put a new one in the morning with his labs since he hasn’t been taking anything by mouth. We haven’t started IV fluids up yet, but we may have to again by the end of the day. We’re going to try some pedialyte by syringe when he wakes up from his nap and see how that goes. He is still having pretty bad stomach cramping and not normal bowels. Hopefully that will continue to taper off.
We are also going to see a speech therapist to see if she knows any tricks, and the transplant team wants a dental consult to look at the lesions and swollen tissue in the back of his throat. The cultures of the lesions from last week still have not come back positive for anything as far as we know. If he takes the pedialyte by syringe and tolerates it, then we may try some soy formula instead of the Neocate (which evidently tastes terrible). He still needs his synagis injection, flu shot, and EKG. The nurses are decorating room doors for Halloween. We’ve been hesitant to put K’s name on the door recently for fear it would mean we’d stay longer. However, we’re going to go ahead and decorate his door up, hoping that karma will work the other way! We decorated his door the first time we were on 8 (after his transplant), and we only stayed 4 days. So maybe this will work! A girl can hope, right?
Please continue to keep Keegan in your prayers. We’re are constantly inspired and uplifted by your support. Please pray that Keegan starts to show some interest in food again soon and for his energy to come back. Thanks so much.