Hayden Kailani

As many of you know, Hayden is a medically complex child who will forever need help and care from someone else. She was officially diagnosed with PCH9 (Pontocerebellar hypoplasia type 9).

Around 830pm Tuesday July 25, Hayden was admitted to the hospital in Knoxville IA after having 2 seizures. After doing the initial blood work and tests, they discovered her blood sugar was extremely low. At that point they decided she needed to see neuro immediately and started calling other hospitals to find her a bed as they don’t have a Peds or neuro team. At 1230am she was lifeflighted to Blanks Children’s Hospital in Des Moines. They decided to re-run blood work and test her blood sugar levels again, which were still extremely low and continuing to drop. They put her on a sugar/salt drip and monitored her for awhile. Around 9am Wednesday they put a new NG tube in and we met with neuro. They decided to do a 24+ hour eeg to try and catch any new/oncoming seizures. So far the only thing that’s come from the eeg is that she has neurostorms (the body's “fight or flight” response becomes extremely sensitive to stimulation). She was moved to the PICU around 130pm so they could monitor her better and have more space to do a 24 hour hypoglycemia test. I don’t think they got the last set of blood tests back yet but she did fail the blood sugar pokes. She was moved out of the PICU on Friday around 2pm. They have since been monitoring her, keeping her on a drip, and checking her blood sugar levels every two hours. until they can come up with a better plan.

Dyllan has taken off work until further notice to watch Kailor so that I can stay with Hayden. We are also in the process of trying to get secondary insurance as our insurance doesn’t fully cover the hospital bills. Please don’t feel like you have to financially help, but any help is greatly appreciated.