Wednesday 3 October 2012

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.


9 comments:

  1. Oh I am praying so hard for your sweet Hope.

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  2. Our hearts and prayers go out to you, Amy. I've been following your journey through a mutual friend. Hope is one strong little girl...and so are her parents. We continue to pray for her, as well as for strength for you. We pray you and Hope have a peaceful night.

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  3. She is beyond a doubt worth every fight. And her very attentive Mama is making sure everyone fights for her! We are praying, praying, praying.

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  4. Thank you for the updates Amy! You have all been heavy on our hearts! We continue to lift your family in prayer. Sarah's prayer request at school is always about Hope, they have all been especially praying for her. Thinking of you. Sandra & Sarah

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  5. Continuing to pray for Hope and each of you, that you will continue to draw strength from our Lord, Saviour, Creator and King. Our prayer is that God will give you the ability to fight the Good Fight of faith as His sovereign plan is revealed daily in each of your precious lives.

    Bridie
    Squamish

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  6. Amy, have they been giving Hope IV morphine? My son Liam (HLHS - post Fontan since this summer) reacted to it by constantly scratching his face, his arms, and his tummy. He didn't seem to have any reaction to it until this last surgery, but it was bad this time around. The nurses in ICU were giving him Benadryl (which helped a little but definitely wasn't fixing the issue) until one day I spoke to the pharmacist, who mentioned hydromorphone as an alternative sedative. By then, Liam had already been 5 days in discomfort. They switched Liam to it that day and the scratching episodes stopped and he really began to respond better in general. Just a thought. Praying for protection over Hope and for healing. Praying you are filled with God's grace as you live through each step forward and each setback.
    Lindsey J Bleach

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  7. prayers continue!

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  8. Amy, we have been following your story as we live through our own with a daughter who has suffered brain injury from a virus....we have been praying for you all, truly understanding the exhaustion and yet the drive to fight....know that we are lifting your family up in prayer and trusting the Lord will give you His peace and give you signs of His presence today. God Bless you!

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  9. Amy: Our heart go out to you during this difficult time. We continue to pray for sweet Hope asking God to do a work in her body. May our Lord lift you up, encourage your heart and give you strength for the day.

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