On the Edge

I was hoping for a boring day, but that wasn't what Hope had planned.  Hope was very tired in the morning when we arrived and slept in my arms until rounds started.  Rounds went well today.  They talked about presenting Hope next Tuesday at the cardiac conference to get us a surgery date.  It doesn't sound like it will be for another month though.  They want to give Hope a month to heal from her hernia surgery.  It looks like Edmonton will be our home for a while.  As she gets stronger, we should be able to do some out patient care at the Ronald McDonald House.

Hope was sleeping all morning and seemed fairly settled.  Around noon she started to get agitated, as she did yesterday, and was scratching her face.  They gave her a dose of Benadryl to see if that would stop her from feeling so uncomfortable.  I was standing over Hope and began to notice that her colour looked poor and she didn't seem right to me.  She opened her eyes and stared up at the ceiling without blinking and was unresponsive.  Her pupils were extremely small as well.  I called the nurse over and Hope continued to be unresponsive and would often stare at the ceiling without blinking.

The doctors agreed that something was not right.  The idea of a stroke was brought up and my heart dropped.  They also worried about Hope's liver function.  If you have too much ammonia in your body, it can cause an altered mental state.  They drew blood from Hope's scalp and ordered a STAT CT Scan.

The blood work has come back normal so far, but we are still waiting for some of the tests that take longer.  Her ammonia level was at the high end of normal which could account for her episodes.  The CT scan did not show any bleeding or swelling of the brain.  This was great news as it rules out a lot of the major problems.  A stroke would not show up on the scan this early.  We are praying that Hope was reacting to the all the protein infusions and other things that have been done that would affect her liver.  We ask you to pray that whatever has happened will not be permanent.

Hope's colour improved by the evening and seems to be more like her usual self again.  She remains in ICE at this point for close observation.  The journey with Hope has constant ups and downs.  It's never easy and although we're tired, but we're giving it everything we've got.  She's worth every bit and more.