Monday, 21 January 2013

Open Heart Surgery #3

I was happy to not walk through today alone.  My mom's flight was delayed even further last night and we ended up in bed at 2:15am!  The alarm at 7am was not a happy sound to either of our tired bodies.  Hope is always so happy to get back into my arms each morning, that makes the lack of sleep worth it.  Hope was taken down for her CT Scan in the morning and did fairly well through it.  She was able to go through it with no sedation!  We had someone come by the hospital to snuggle little Hope while we went back for a short nap in the afternoon to find the energy for the rest of the day.  In the late afternoon the GI doctor came to let me know that Hope will be having her Varices procedure tomorrow in the late morning.  Please be praying for Hope as she goes through this procedure.  Pray against any bleeding complications, reactions to the anesthetic or difficulties waking up.  Thankfully she is going to be in the hands of an anesthetist that is very familiar with her and all her quirks.

Around 4pm the cardiologist came to talk with me.  I knew things weren't going to be easy when he asked me to follow him to a more isolated location to talk.  The CT Scan showed a few kinks in Hope's aorta.  These will need to be surgically repaired and can not be done in the cath lab.  Tomorrow the surgeons will discuss Hope and decide when to do this.  The cardiologist felt that it would be sooner rather than later.  He mentioned that it could even happen in the next few days.  Hope will need to have her heart completely stopped for the procedure and will be on the heart and lung bypass machine.  This is so discouraging.

The logistics of it all stress me out on top of my little girl needing such an invasive procedure.  Shawn will obviously be coming back for the open heart surgery and will need to figure everything out with work.  Sadie now has a Nanny and we have committed to pay her for the next 6 weeks.  As a result, if we bring Sadie to be with our family, we'll still need to pay her.  Sadly we won't be able to get 40% of it from the government like we usually do if Sadie is not actually in Calgary.  Our home care nurse was set up in Calgary and spending 4 nights a week with Hope.  It takes away the hours from her as well.  I have no idea how long we'll be here and the thought of it being more than a week or two is exhausting.  How long Oh Lord?




14 comments:

  1. Oh Amy. I don't even know what to say... There are no words - only that I know it isn't 'hard' for God to keep Hope safe, to heal her, and to make this period of time a mere "remember when...?"
    Praying for peace and wisdom - and am so, SO thankful your mom is there with you - just in time!

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  2. Hi Amy - I don't know you but have been following you since Hope was born. Is there a place that I can make a donation to you? I'd like to help you with your nanny fees through this difficult time. Praying for you....Angelina

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  3. Could the nanny and nurse come with you to Edmonton? That might make everything more consistent for Sadie, less stressful for everybody, and give you more flexibility....? Just a thought! :) Praying for widom in your decisions, skill for the surgeon and medical team and strength for Hope.

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  4. God is with your family. I am praying for you and especially little Hope tomorrow. You are so loved. xoxo.

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  5. You are loved. Praying for you all, especially Hope.

    Hugs,

    Elizabeth Gaasenbeek

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  6. I will be praying that this surgery will give Hope the help she has been needing to grow and be healthy. Remember that God is with you always.

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  7. Grateful with you for things like a visiting mom, a CT Scan without sedation and an answer to the mystery of different pressures in the aorta... even if it will mean open heart surgery on bypass. We will be praying for continued strength for your sweet warrior, and for all of you. Praying for every person on the team that is prepping her for and performing the surgery, and all those caring for her throughout recovery. That God would hand pick each one, and give them divinely inspired ideas and insight for her care and treatment. Praying that your sleep and energy is multiplied and that you experience that peace that really is beyond our understanding. with you in prayer. annie in toronto.

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  8. Your family is in our prays. Prays work they are healing my sons HEART every day.

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  9. Praying for his incredible peace to cover you...

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  10. Hello Amy, you don't know me, but I have been following your Hope's journey for a while now, through a common friend on facebook and I wanted to let you know you are surrounded by love and support.
    You and your family are in my thoughts and prayers xo

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  11. Hi Amy,
    Praying for you and your family. I am so sorry you are facing another open-hear-surgery. We faced one as a family and it was so hard. I saw your article in Heart Beats and it made me cry. I pray that Hope would come home to be with your family for good very soon. You don't know me, but my husband and I met Ryan and Christen in Australia, and I heard of your blog through them.
    Praying for you all,
    John, Christina, William (heart child) and Nicholas Taylor

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