Saturday 26 January 2013

The Hope 180

I have decided that a 180 is too simple of a term for what Hope does.  She needs to have her own phrase to describe the antics that she pulls on my heart.  I have decided to call it, The Hope 180.  It is not a complete turn around because first you have to pretend you are doing much better, then make a huge turn around and do the opposite.

This morning we got the call from my mom that Hope was not doing well.  Her work of breathing was up, she'd thrown up most of the night and was no longer being fed. Her oxygen levels were poor and her heart rate was high.  The cardiologist came on the phone and told me she did not look good.

When Shawn and I arrived at the hospital we could see that she was not as strong as she had been the day before.  The PICU had already been up to see her and they were talking about whether or not she needed to be taken down there.  Hope was no longer looking like she may be headed home with us, some things are too good to be true.

What happened??  At this point they aren't sure and we're looking for answers.  They have 3 possibilities of what went wrong.
1. Hope aspirated on vomit in the night and has fluid trapped in her lungs as a result.
2. Hope's line is severely infected and has passed into her blood, causing her to be septic.
3. Hope had a rare reaction to the blood transfusion and it should resolve in 24-48 hours.

Hope's X-ray does not look good, but I still don't feel that she aspirated.  It simply doesn't fit with what I've seen her do and how she often responds to vomiting.  I'm willing to admit that I could be wrong.  I feel like the line infection makes the most sense.  The doctors took blood from Hope's neck this morning and sent cultures that should be back in 48 hours.  She was started on two broad spectrum antibiotics as well.  She appeared to improve by the afternoon and I wonder if the antibiotics are already touching the infection.

Our major issue once again, is the PICC line.  We are now in need of access to Hope, again, in order to run the antibiotics.  We may also need to start TPN if she is not able to tolerate her feeds.  There is a question of whether she has feeding intolerance, or was only vomiting because of being sick.  Time will tell I guess.  The PICC line is already leaking and cannot have TPN run through it as it would cause a burn on her skin.  We need a new line and this issue will likely be addressed on Monday.  There is no one on this weekend that would consider touching Hope, it's simply too dangerous at this point.  Hope is already so skinny, I can feel every ridge of her spine as I rub her back and see every rib.  Even a weekend without proper nutrition is not good for such a thin baby.

Please pray for us.  We are so discouraged.  Hope (not the person) is a dangerous thing, it can be the strength that carries you through, but can also be so painful to have it taken away.  There is still a chance that the infection, aspiration or blood reaction will clear and we can get back on track to take Hope home.  It's just a whole lot less likely.  Is this the answer to our prayer and the way to push us to have Hope's surgery?  We are not sure quite yet and will likely have to wait for the cardiologist to comment on that Monday morning.

Today I watched a mother grieve after being told there was nothing more the doctors could do for her son.  We know that we are so close to that place with Hope and I cried seeing her pain and knowing that it could easily be mine.  I want a miracle for them, a miracle for Hope and my family back together again in Calgary.  We need a multitude of angels to storm the ICE here at the Stollery Hospital.  We want to see God move in a powerful way in the lives of these kids and we believe He is able.  Would you please pray that this would happen?  I would love to have a picture of Hope with this little boy in 5 years.  A true testament to the medical community that miracles happen, even when there is nothing they can do.

14 comments:

  1. Hold on, Amy. To everything. Keep envisioning the pictures of Hope as a healthy child. Think only of the positives. Continuing to send prayers and healing to each of you.

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  2. So sorry to hear of this set back...am praying this morning for God to show up in a real way for you this morning, as well as for the other families and that a miracle would be in His plan...what a roller coaster ride...praying God holds you all tightly today...

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  3. A multitude of angels stormig Stollery - on the way! Hold on to faith hold on to Hope... love, hugs, prayers, and miracles for you and the families in ICE. Be strong Amy, continue to be strong....

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  4. I just found you off a friends Facebook page. It is Sunday morning here an I will be praying for baby hope and for you and your family. I noticed the word Stollery in another comment. We are not far. If there is something we can do, food we can bring..practical help..please feel free to email
    Darci mdhovdestad@gmail.com
    It would bless us to help you in some way.

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  5. I have two aneurysms that are reducing in size. One in the IMA artery and one in the SMA artery. Something they have not seen before. I believe there is hope....

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  6. "There is a Light, it burns brighter than the sun,
    He steals the night and casts no shadow.
    There is hope, should oceans rise and mountains fall, He never fails.
    So take heart; let His love lead us through the night. Hold onto hope and take courage again.
    In death by love, the fallen world was overcome.
    He wears the scars of our freedom.
    In His name, all our fears are swept away.
    He never fails.

    All our trouble and all our tears, God our hope,
    He has overcome!
    All our failure, all our fear, God our love,
    He has overcome!
    All our heartache and all our pain, God our healer,
    He has overcome!
    All our burdens and all our shame, God our freedom,
    He has overcome!

    All our trouble and all our tears, God our hope,
    He has overcome!
    All our failure and all our fear, God our love,
    He has overcome!
    God our justice, God our grace, God our freedom,
    He has overcome!
    God our refuge, God our strength, GOD IS WITH US,
    HE HAS OVERCOME!"

    Take Heart by Hillsong


    "In this world you will have trouble. But take heart! I have overcome the world!" Jesus Christ (John 16:33)

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  7. Praying for Hope and for your whole family. God knows the final outcome of this horrible situation. His will prevails. Praying He carries you all through with peace and love. We all want to see a miracle! You are loved and we truly care about all you're going through. Take care.....Hugs

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  8. Oh Amy (the name of my little cousin) you are so amazing to me! But more amazing is the God whom you and your family and I serve. I believe he has a plan in all this. I don't know what it is...I really don't. And I am a realist. But whatever the plan I know that it is for His Glory. I know your suffering and pain is for His Glory. I will pray for the Angels to come and touch those young lives and also the ones watching over them...both parents and doctors...in whatever way God has planned. His plans are perfect! May God Bless you as you continue to walk this walk of extreme faith.

    Knufs (Dutch Hugs)

    Naomi

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  9. I couldn't sleep last night and your little Hope was on my heart. I am praying for a miracle!

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  10. I'm so sorry to hear about this weekend's turn... praying the cause is made clear quickly and treated. Praying and believing for more miracles for Hope - and that she would continue to respond well to food, the varices would continue to shrink and that she would keep improving. We are holding you up especially during these times. We're heading into hospital this Tuesday for our little guy's fontan. Will be tracking with you all and remembering you even - especially - while we're there. here's to healed hearts and more miracles on 2013!!!

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  11. My heart goes out to you and your family. If there is anything that you need or any way I can help you out please let me know. danellelan@hotmail.ca or a fb msg

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  12. Continuing to lift you all in prayer and asking Him for an amazing miracle.

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  13. I was praying for Hope in the middle of the night as well. I will continue to pray for this little girl every time the Lord lays her on my heart. If you need us for anything, Amy, my husband and I are so willing to help while you're in Edmonton. Message me on Facebook if you don't have my number anymore.
    Jenni Leriger

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  14. Praying for Hope, you and your family. I came across this link on a friend's FB page and I have been following Hope's story. Praying and hoping for a miracle for this precious little girl.

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