An Entire Day Spent on the Phone

And it may be starting to get us somewhere.

I called the PE; no cancellations yet. I called the PN; not willing to make a more urgent referral. I called the head of neurology, and left a voicemail. I cried when I talked to his secretary who scheduled a time for him to call me next week. She said he might be willing to look into Kid1's information and give us the referral. She said she would print it off and put it in his inbox to look at tomorrow. She said she would mark it urgent and hoped tomorrow was a slow day for him so that he would have time to look it over. I cried when I thanked her.

I talked to a friend's nephew's wife, who is in a neurology rotation at a children's hospital in B.C., who told me to get together her records and a video of the seizures, send them to her and she would present it to her mentor. She suggested forwarding the same information to every PE in the country. Her reasoning is that if Kid1 can get in with one PE as a new patient, almost any PE would accept her as a referred patient because someone else would have already done the work and it would just be monitoring.

I called the PN again to ask them to forward their records to the paediatrician. I called our paediatrician and asked her receptionist to get all the records together so that I could sent out packets express post tomorrow afternoon. I asked the paed. to give us a secondary referral to the PE and a referral for a new PN. Which she did, but too late in the day for me to call about appointments.

I called my dad, and cried, and he called a friend who is a retired epileptologist in my dad's home country, who offered to look at her info and try to make a few calls, even though he is not sure how much influence he would have here.

I called the hospital where PN is an associate and inquired about making a formal complaint against him and was strongly discouraged from doing so, but told I could do that through the federal medical practitioners board. Which we probably will.

Lots of leads, but no promises. It is frustrating that my daughter desperately needs this care and it seems to be just out of our reach and as though whether or not she gets it anytime soon depends entirely on the goodwill and interest of professionals. I am not enjoying this process, but I don't intend to quit until we get a solid appt with a PE within the near future.

Tomorrow, I will call the PE and the PN again, visit the paed, send out packets and begin contacting PEs in Canada and a few in the US. And hope that my boss understands why I am taking the day off work and doesn't fire me since I have done this a lot lately.