Mayo Moments

Wednesday, 21 September 2011

Wishing and hoping and thinking and praying....

Wishing and hoping and thinking and praying

This is the phrase that keeps going through my head.  Now I know that it is the opening line from a delightfully cheesy Burt Bacharach song, but it fits here too.

So much of medicine is waiting.  Waiting and ruling things out.  I realize that eventually, we will rule out most things and what we are left with is the probable diagnosis, but really, how comforting is that?

On Monday, Leah and I travelled to McMaster Children's Hospital again.  This time she was going for her second EEG.  We met with a fabulous technician.  She was so professional yet very kind, personable and put Leah right at ease.  She encouraged Leah to sleep if possible because the test can pick up some different information when the patient is asleep. 

First they created a baseline - she had Leah lie very still with her eyes closed for a while, then with them open and then closed again.  From my seat in the room, I could see the monitor and she had  very rhythmic readings.  Then they did the 3 min HVPT - Hyperventilation Provocation Test , after that test, even when she did fall asleep, her patterns never returned to a nice rhythmic pattern.

Now I don't pretend to understand what I saw, but I thought that it was interesting that after the HVPT was done, there were noticeable changes in her brain activity.  Even while she was asleep there were sudden and large spikes in activity. 

As always, the technician isn't allowed to tell us anything.  She said a neurologist would review it and a report sent to our paediatrician.  We can expect the report to hit his desk in about a week.

While we were at McMaster, I stopped by the Neurology department to put another bug in the ear of the secretary.  She now has a sticky note with Leah's name on it attached to her monitor.  It is to remind her to continue to search out which doctor is reviewing her file.  Not that I was told this, but I get the feeling her file is lost amidst paperwork on some doctor's desk.  So, I will continue to call and stop by until someone tells me she has an appointment!

On a positive note, we had a great weekend full of family fun.  Saturday we went to the Pied Piper Parade - a family tradition!  Leah was a beautiful bride and had lots of fun on the play activities in the park afterwards.  On Sunday, Leah had a wonderful time at her BFF's house and then we went to our local pumpkin farm for a great outing on a beautiful day.  Fun was had by all and we all returned home tired, but happy.

So until we find some answers, we will continue Wishing and hoping and thinking and praying


  1. I want to affirm your role as advocate for your daughter. You are doing a great job and one that no one else can do for her. Keep at it. I pray you will find out what is going on soon and will be able to address it practically.

    Blessings on you and your family.

  2. Buz says, "Has she been tested for Lymes Disease?"