Phoenix

The day after Chris was supposed to deploy, we got word that he was not deploying. We had already scheduled our utilities to shut off, my trip was planned and we were ready to go. We made the decision for Matthew and I to still go to Phoenix for treatment out there. Steve (Chris's best friend and the guy renting our house) drove across country from FL to AZ. It was a long trip with a sick baby. He had a bad cold and was throwing up. We made it though....3 days. We stopped twice for the night. We had to make frequent stops to feed Matt, change Matt and give him meds.

We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.

Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.

So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.

I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.