Fall Is Here

Fall is my favorite time of the year! Despite being so busy,  I still can’t help being so excited about decorating my house.

Kylie had hydration infusion along with some IV Zofran. She was night and day  better. It has held her over for now, but I am worried about the weekend coming. Last night she was kind of fading again. We are still in the process of preauthorization for insurance to cover the PICC line as of this morning, and that can’t seem to come fast enough.

One of the most frustrating part of having Phenylketonuria (PKU) is the fear of needing medical attention on a day when your normal practioner will be unreachable. Being such a rare disorder, most doctors never understand the imminent danger. When Kylie has hyperemesis in pregnancy, they simply don’t have a hydration issue to deal with. If Kylie’s phenylanine level elevates and since her own brain is unable to digest it, the excess phe will technically “poison” her unborn baby. Two days of dehydration will make Kylie very sick, but those same two days of elevated phe can be detrimental to her baby’s life.

I hope we can get everything squared away today. I also hope the stress doesn’t take a toll on Kylie or Lopez. I plan to distract myself from the worry by decorating for fall!