Monday, 15 April 2013

Viagra for Hope?

Today we were all reminded of how sinful and sad our world truly is.  I mourn for everyone that was killed or injured in Boston and their families.  What a horrible tragedy.  Moments like these remind me to be thankful for everyone in my life and to live each day to the fullest.

Today I had a meeting with the doctors once again.  The specialists all came together to discuss what should be done with Hope.  When they met on Thursday last week, they met under the assumption that Hope would be taking Milrinone (a heart assistance drug) for a week.  She came close to dying after that meeting and it was clear that she was not tolerating Milrinone at all.  The medication was stopped and Epinephrine (also used for her heart) was started.  She has been on it since then and unable to come off of it.  This is not a medication that she can stay on long term and the meeting today was to discuss what should happen next.

They have decided to put Hope on two new medications tomorrow and to stop the Epinephrine.  Please pray for this transition as there is a chance we could have the same reaction as we did on Thursday and it could be extremely dangerous for Hope.  The first medication is a new heart assistance drug that is similar to Milrinone but not the same.  The second medication, surprisingly, is actually Viagra.  It is used to open up her pulmonary arteries and assist in her breathing.  Hope continues to struggle to breathe and is exhausted at all times.  I am hopeful that these medications will make a positive impact.  We have at least another 7 days minimum in Intensive Care.

This afternoon I stood by as Hope screamed having her blood drawn.  She is completely over being poked and only truly awake when something she doesn't like is being done.  I would say that Hope currently sleeps through 21 of 24 hours a day.  They are looking for reasons to explain this complete exhaustion, but it could simply be her heart failing and the energy it takes to breathe.  It is extremely difficult to witness and I feel myself falling apart slowly and clinging to the truth that God loves her more than I do and is crying over her as well.

Tomorrow Hope will be presented (via teleconference) at the Cardiac conference in the afternoon.  As long as Edmonton sticks to their original opinions, that there is nothing more to be done for Hope, we will move forward with transplantation.  There is a slight chance that they will choose to try one more open heart surgery.  This frightens me as it would be extremely dangerous and potentially life threatening for Hope.  I think I'm more fearful that they'll recommend surgery than listing for transplant.

If they decide not to operate, Hope will be presented at Transplant conference on Wednesday morning. As long as there are no surprises, we hope that she will be listed by the end of this week.  Would you join us in praying?  It feels terrible to pray that someone else would lose a child, so please do not do that.  Please pray that WHEN someone loses a child, and sadly it happens in this sinful world, that the parents would have the strength and love to choose organ donation.  Please also pray that soon a child that has sadly gone, would have a heart that is a perfect match for Hope.

It was explained to me that usually a child is able to take a heart from someone 10% below them in weight or double their own weight.  For Hope that would mean the donor would need to be between 4.5-12 kg.  Sadie is just over 12 kgs which means the donor would likely range in age from 4 months to 2.5 years.  I absolutely ache for families that have or will lose a child.  I have been very close and that pain has been more than I can often bear.  I have a strong burden to be praying for the family who's child will hopefully give new life to Hope with a strong and healthy heart.  I would really appreciate others joining me in this.

Thank you to everyone that has reached out and loved on our family this week.  This is not the first difficult week we've had with Hope, but it has not been easy after being so close to discharge.  The talk of Hope coming home soon has completely gone and we now must gear up for another long and exhausting journey.  We believed for a time that we would finally have a chance to rest, but now have to go back into battle, already weary.  We know that we are not alone in this and truly thank God for sending so many people to walk with us through this.  I simply could not imagine doing this without you all and with out God.  To God be the glory for the great things He has done.

16 comments:

  1. Praying for you and your family Amy. I truly see the love that God continues to pour out to you.. I see this because of the strength that you have. Thank you for your updates.. praying for your beautiful child and the rest of your family.

    ReplyDelete
  2. Amy, once again you've amazed me and your faith has brought me to tears. I thought of you through out the message at church on Sunday, titled: Spiritual survival basics" all about our foundation and how it needs to be in God in order to handle dark times. Psalm 77 was our focus; starting with the Psalmist first honestly, emotionally questioning God. His questioning though reflects his knowledge of the type of God he believes in. Then, the psalmist turns the focus off of himself and onto God (around vs. 10). His answers and solid ground come from looking at God. He backs up in time...goes into basic survival mode, and looks and what he knows about God and what God has done. He considers the other options he has (vs 13), if he chooses to give up on God. Then he goes to solid ground, to looking at what he knows of God from what God did - bringing His people out of Egypt, a most unlikely occurrence. Today our Exodus is the cross. When our emotions are tanked, it's the cross that we go to for our foundation. From our perspective, we could write a better story for our lives, our childrens' lives etc. but God is our anchor, He's writing the story and leading us. Amy, I say this not to encourage you to follow the Psalmist's roadmap for building your foundation on God, but to tell you that through Hope's life, your story, you HAVE ALREADY DONE and ARE DOING this so well, you've been honest with God, questioning Him in the context of what you know and believe of Him, then confirming that He is your solid ground. I am so amazed, humbled, challenged, proud of you Amy. It is so clear to me, and it must be to everyone that has read a single post, that God is your solid rock, your foundation and that you are trusting Him to lead you and like you said, to love Hope more than you do. Praying for you all every single day, many times.

    ReplyDelete
  3. Praying for all of you that God would give you all strength, peace and comfort including an unknown family that may give the gift of organ donation.

    You walk a hard road for such a young woman, thankfully God walks it with you...

    ReplyDelete
  4. We will pray even more that you all will receive the peace you need. Hope is a very strong spirit. God has been with her and your family every inch of this journey. May he give you blessings along this next step.

    ReplyDelete
  5. I honour you Amy - even though I have never met you. I honour you for the incredible grace of God, faith, tenacity and peace you show under such immense pressure. Your faith oozes through every post, and you are one of the strongest testimonies I've been blessed to encounter in recent years.

    God bless you. God annoint you, your husband and your family with the energy to stay the path and fight the fight.

    Hope is in my prayers often. Love from my family to yours x
    Cath

    ReplyDelete
  6. Prayers, as always. Yesterday's tragedy in Boston is truly a reminder that we should cherish each moment we get to have with the people we love. You do that so well. Hearts are with you here in Ontario.

    ReplyDelete
  7. Praying for you and Shawn and Sadie. You are a faithful servant to God and I know He is with you.

    ReplyDelete
  8. Just letting you know that I am one of many who are still here and sending ever so much love to you and Hope and your family. I talk to my husband and mom and friends about Hope. I check on her everyday here. I am pulling for her with all my might.

    Love and hope from afar,
    Jennifer <3

    ReplyDelete
  9. Praying for Hope, you and your entire family. May God's loving arms be wrapped around each of you.

    ReplyDelete
  10. I feel for what you are going through. We have been through health struggles with our only daughter, starting with cancer at age 6 (Ewing's sarcoma) and another cancer on her face at a later age. Just before she got married, they discovered hepC from the blood transfussions at age 6 to 8 (1983 and on). She told her husband to be that they couldn't get married, and he said that a few years with her was better than a lifetime without her. She had 48 weeks of treatments for the HepC, and went on to renovate a large house and start a live-in mentorship program for Intervarsity Christian Fellowship leaders. They adopted a baby, and later she contracted H1N1 and Congestive Heart Failure at the same time.

    Was it hard? Sure. Would I wish to change the past? Only some attitudes I had before going through it all.

    One thing I never liked hearing when I told my story was, "Oh, we're so Sorrrrry!" I don't like sympathy, because I don't want to feel the negative. I want the uplift, the good news that can come out of the situation. So if I don't pander and say how bad I feel for you, well, bad on me, but I don't think that is what you want to hear. Sure, I don't know exactly what you are going through. But I know the God who is strengthening you and holding your hand, and HE WILL NOT FAIL YOU!

    blessings,
    Rick Galbraith,
    Winnipeg, MB

    ReplyDelete
  11. I am so thankful Hope has parents like she does. I am praying. I know God is sovereign and whatever happens will be his plan. Hang in there and keep on keeping on.

    Naomi in Ontario

    ReplyDelete
  12. Love and prayers for all these burdens. Thank the Lord we never need to carry them alone.

    Prayers from Ontario

    ReplyDelete
  13. Amy, I understand the feeling of "going back into battle while still weary". God surround you and buoy you up right now.I am also praying for this other family if indeed Hope receives a heart from another young child. I still pray her heart be miraculously grown. God indeed weeps with you in your pain, and He won't leave your side. His Spirit be with you all.

    ReplyDelete
  14. Dear Amy,

    My husband and I have been following your blog and I just read your last entry. We are praying for a brand new heart for Hope and supernatural strength for her little body! With Jesus, all things are possible and he loves to heal and restore!

    We live in Germany but have been really blessed by Bethel Church in Redding, California,and I just felt like I should let you know about it. They pray a lot for the sick and have many breakthrough-testimonies of any kind - including heart issues. If you click on the following link you will get to their website and find all the information you need to skype with their healing rooms (Thursday and Saturday mornings):

    http://www.ibethel.org/how-to-skype-with-healing-rooms


    Love and blessings,

    Debora Focking

    ReplyDelete
  15. Hey!!! Nice Information which you are mentioned under the category of health. I am really really appreciated. Very great Stuff you are mentioned about cardiology and other elements related to health. please keep it up. you can also visit our links which is also relates to health. Our specialization in various types of cardiology, bypass surgery, open heart surgery etc. etc. for further information please visit our site today.
    Cardiac Hospital | Heart Institute In Yavatmal | Heart Institute In Akola | Heart Institute In Nagpur | Top Heart Hospitals In India | Top Cardiac Hospitals In India | heart hospital in nagpur | Heart Institute | Cardiothoracic Surgery in nagpur | Heart Operation in nagpur | Heart Operation in nagpur

    ReplyDelete
  16. Many of the Online Jobs and Online Earning System in internet online Business, but here is a best and legit online earning systems with life time opportunity.
    www.jobzcorner.com

    ReplyDelete