Friday, 23 November 2012

Only He is able

It's Amy's mom here.  Sometimes it's just too hard for Amy to write the blog.....this is one of those days.

This afternoon was characterized by a steady flow of doctors coming in to talk with us.  When they weren't in the room, they were gathered in the hallway outside Hope's room discussing her complicated medical state.  We spoke to anesthetists, G.I. specialists, cardiologists, intensivists, surgeons and then some.  The final decision was that Hope's condition posed too great of a risk for surgery and that she is too compromised, because of her previous experiences with anesthetics, to undergo another anesthetic at this time.  Basically, the risks outweighed the benefits.

The thought is that Hope's bleeding is either coming from a varices (extremely dilated sub-mucosal veins in the lower esophagus) or a stomach ulcer (stress ulcer probably a result of the heart surgeries).  If it's coming from a varices, then you need to treat it with sclerotherapy during surgery.  If it's an ulcer, it is treatable with medication and almost always improves with time.  Because Hope is at such a high risk for being put under anesthetic, the surgeons feel, if it proves to be an ulcer, the surgery would be unnecessary and possibly at great cost.  They would like to wait until Monday to reassess at that point.  If Hope were to have another massive bleed on the weekend, they would have no choice but to operate, but this is not a good option, as the weekend is not staffed with the "A" team that they feel is imperative for Hope.  They are treating her with ulcer medications and hoping that there will be no additional bleeding over the next 2 days.  She has been put back on the coagulant meds that are used to clot her blood, but they are hoping to stop them and get her back on the blood thinners as soon as possible, so that she will not develop any clots where they shouldn't be.

Hope's portal vein hypertension is felt to be a major issue in all of this.  At one point today, in discussions with the various medical personnel,  Shawn and Amy were told that Hope is not a candidate for her third open heart surgery and not a candidate for any future heart transplant.  They made it very clear that Hope's life span is likely not going to be that long and that there is not much hope for her future.  You can imagine how hard it is to hear this news.  To say we feel very discouraged is an understatement.  Unless God works a miracle in little Hope's life, we may have to say goodbye to her a lot sooner than we ever planned.  We have not given up, because we believe that God is able, but we are feeling physically drained and emotionally discouraged.

Amy and Shawn spent much of today in tears before the doctors, begging them to do something and not just let their daughter slowly die.  Hope is struggling to breathe on and off and is on constant oxygen once again.  She is uncomfortable and irritable through most of the day. It is almost too much to watch at times.

Hope is God's child first.  He has trusted her into Shawn and Amy's care.  Please pray that He will give them wisdom and discernment as they fight for her life.  We are asking the Lord to give them strength and endurance on this most difficult and often discouraging journey.  Together, may we never give up hope.


  1. Thanks Charlotte. We will ask The Lord to change seemingly insurmountable circumstances - who else can?

  2. Karen Richardson and Alain Desgagne23 November 2012 at 23:29

    "They (the doctors) made it very clear that Hope's life span is likely not going to be that long and that there is not much hope for her future."

    My husband and I have heard that advice and worse from doctors for our son. We were told when he was a newborn expressly and repeatedly that there was no hope and that we should not entertain any hope for his life because it would be false hope. We were told that there was no longer anything that could be done medically for our son and that we needed to decide whether we would prefer him to die at home or in the PICU.

    He just celebrated his 7th birthday. He is learning to read, learning math. He is in AWANA and loves it. But the (AWANA) Bible verse he has been relentlessly and joyfully quoting the past couple weeks is, "I am the LORD, the God of all mankind. Is anything too hard for me?" (Jeremiah 32:27)

    Hope's medical team's assessment is not prophetic. It is mere human opinion and as such, fallible. As my son's pediatrician wisely observed during our trial, "What is written above is written above".

    May the Lord's will be done. Be at peace. Be strong.

  3. Praying and sobbing for this family and sweet little girl.

  4. Praying the Lord gives all of you wisdom and comfort...

  5. Hope has touched my heart and I will continue to pray for her and your family. Much love and strength to you all. God bless you and sweet Hope.

  6. I am praying for Hope and for all of you. I am praying for a miracle for Hope, and for the Lord's sustaining grace for you all.

  7. I don't know you people at all but I'm praying fervently for this little girl and all of her family, her dear sister, her brave mommy ans daddy, her terrific extended family that are al praying for her and loving her. Please dear God in Heaven put your healing hand on this little child. . We pray for strength and courage for this awesome family that are your loving children. God you are the Great Healer and our Great Comforter. We love you Lord and know you are the Almighty and only Comfoter.

  8. Praying for God's peace and comfort and for a miracle for baby Hope.
    Psalm 94:19 - When my anxious thoughts multiply within me; Your consolations delight my soul.

  9. Thank you for sharing the details with us as we walk and pray, cry and plead along with you guys...

  10. We will continue to pray that Hope will be healed by God!! Also for strength and peace for you Amy, Shawn, and all of your family!

  11. Thank you for sharing this incredibly tough journey. I will continue to pray for Hope and for the entire family, especially for Shawn and Amy as they sit vigil by her side. You all are couargeous and I am sending my love, thoughts, and prayers to you and to the LORD! May He give you more strength and comfort during this time!

  12. The Lord gave me this verse this morning:

    For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

    Our Saviour can move mountains. Praying constantly for Hope.

  13. I attended Park growing up & remember your family. I am so deeply sorry for what you are going through. I pray healing for Hope in the name of Jesus and pray that his peace that passes all understanding will be with you.

  14. We're standing in the desert of dry bones
    But still we see Your life
    Walking through the valley of shadows
    But holding onto light
    And we're waiting, waiting on You God
    And our hearts will trust, trust in who You are

    God who keeps our fires burning
    Burning through the darkest night
    See the hope in our hearts
    The faith in our eyes
    You can move the highest mountain
    You can keep our dreams alive
    You're the joy of our hearts
    You're the fire in our eyes

    (song is "Fires" by Matt Redman)

  15. All I can do is to pray for Hope that God will completely heal her body! Pray for her Mommy and Daddy, that HE will give them wisdom, peace, and strength to deal with everything that happens. That God will be with your parents, and the HE will be their strenght, and wisdom as they walk beside you on this journey!
    it sure has been a rollercoaster, yet God has been with your little girl, has proven them wrong, and has been her healer!
    May HE continue to do what HE does! praying for you all....feel for you, but know that there are a Mighty Army of Warriors out here praying for HOPE!!!!

  16. I don't know you, but have been following Hope's journey for months. I am praying, crossing fingers and toes, and wishing on stars - anything that might help this sweet little baby girl and her incredible family. I have hope in and for Hope! Stay strong, keep fighting! Sending love, and strength, and prayers from here to there...

  17. Blessings as only God knows the outcome.