Tuesday, 27 November 2012

Genius Convention

This morning I dropped my mom off at the airport on my way to the hospital.  As I left the airport, I realized how truly numb I've become.  I find it more difficult to cry, unless things are truly terrible, and I cry less often even when I experience joy.  Although this protects me on many days, I also find it discouraging.  I don't ever want to become completely numb to emotion, it's not healthy.

Hope was sleeping when I walked into her room.  When she saw me, she began screaming for me to come and pick her up.  We managed to go the entire day without a sedative!  Hope was sleeping comfortably most of the day and didn't have a need for it.  It was a blessing to know that although she's on a lot of pain medication, she no longer needs the sedative as well.

Today we were finally able to give Hope some food!  She started feeding at 2 mls an hour and appears to be tolerating it well.  We're still not sure if she'll receive her scope or not, that should be discussed tomorrow.  The top of Hope's PICC line is not looking well, it's beginning to get pussy.  This is a terrible sign and could result in us losing the line.

A few days ago they mentioned that there was a small clot at the top of Hope's PICC line.  I never gave it much thought, I expected her to clot without her blood thinners.  Unfortunately, this is a major problem and could turn out very badly for Hope.  With the line infection starting up again, they may be forced to pull the line.  If they pull out the line, the clot will dislodge from the PICC and could go anywhere.  They worry is that the clot would head to Hope's brain and cause some serious problems or a stroke.  This obviously makes us nervous and adds more stress to the situation.  Hope's blood thinner dose was doubled today in an effort to dissolve the clot.  This could easily cause Hope's bleed to start up again.  There doesn't appear to be any easy options these days.

Tomorrow at 1 pm we will be attending a genius convention.  The lead intensivist, 2 cardiologists, anesthetist, GI specialist and the hematologist will all be sitting down with Shawn and I.  During this meeting, we will be discussing the next steps for Hope.  Please pray for us as we go into this meeting and make vital decisions for Hope's future.  Please pray that Hope's clot quickly dissolves and does not cause further problems as well.

Today we were told that Hope is stable and could easily be transferred to the ward tomorrow or the next day.  This means we will have a lot less time as a family and life becomes even more challenging.  I really struggle with balancing my life when Hope is on the ward.  We are working to get our insurance company to approve some private care at the hospital.  With 3-1 nursing care, we are not able to leave Hope alone and truly need the help.  We were denied it, in the past, because Hope is already considered to be under the care of nurse.  We're praying they understand our need to leave the hospital and see that Hope needs more attentive care.

Hope's antibiotics need to run for 6 weeks.  As a result, they don't see any way to have her out of the hospital by Christmas.  We are now hoping to be home before the end of January.  I can't even think about how long that is, it's too hard to face that reality.  We are thankful for your prayers, we truly need them.


  1. Dear Lord
    As you have responded so faithfully in the past, I pray you allow that small clot to dissove, that puss-y Picc line to clear and that the big meeting will be an ENCOURAGEMENT for Amy and Shawn and not just another time when negative is poured all over them. I pray that You will infuse the specialists with realistic HOPE that they will see past the challenges and make good decisions for Hope's care! Amen

  2. Hi Amy, I've been following your blog and praying for Hope for a while now. Every morning I check for updates to see how your little one is doing. I have a little girl who is 9 months old and every time I nurse her I pray for Hope. I have prayed for peace and healing in her body, and for strength for you and Shawn. I will be praying for your meeting tomorrow.

    1. Hi Amy and Shawn, my heart breaks for you and your family, but I read with admiration. You're strength is truly incredible and I pray for you, your family, and of course, for Hope. In such trying times, you show courage beyond my comprehension. I pray that you both are continued to be given the strength to support Hope through her journey and that the news given tomorrow is positive and offers relief.

  3. Our prayers will persist in rattling the doors of Heaven on your (pl) behalf! I like that term "genius convention!" We called the "-ologists meeting." :) We trust that God knows Hope's every need, and know that that pussy PICC line and clot are in His great Hand as well. Prayers for peace and sanity as you move pack to the ward...

  4. Your journey has affected the lives of people you haven't even met yet. Because of you, I look at my daughters with softer eyes, love them more tenderly, and cherish our time together more earnestly. You are in my thoughts and prayers always. I too pray that you both continue to stay strong through this journey and that tomorrows news offers new light.

  5. I EXTRA love this post for a selfish reason...fingers crossed....love ME :)

  6. Hi Amy, I am so glad that Hope did not need any sedatives today, being in your loving arms was enough for her and that she was able to take and keep food down another victory. I will pray at 1:00 tomorrow when you and Shawn are having the big meeting that good decisions will be made for Hope's care and also that the insurance company will allow you coverage to hire private nurse so that you can get a little well deserved break.

  7. Father in Jesus Christ name I pray for a miraculous healing for Hope! I pray and speak complete healing into her spirit, soul and body. I ask Lord Jesus that you would cancel out any assignments the enemy may have against Hopes life and health in Jesus Christ name. I pray Lord for your grace and mercy into her life. Father would you cut her off from any generational curses or anything that may be affecting her from getting better and receiving your full healing in Jesus name. Lord Jesus I know you are able to do anything to heal anyone so I ask you for mercy for little hopes life I pray you would use this situation for your glory and that you would strengthen her parents hearts and give them a strength and faith they never knew they could have. Could you hold them up by your holy spirit Father and show them how involved and concerned you are about this situation. In Jesus name we put this all in your hands and ask that your perfect and good will be done. Amen

  8. God can dissolve clots like, "poof!" We will all ask Him to do that - and prepare a new, healthy entry point for either a IV or PICC site.
    Love and prayers to your family, Amy.

  9. My family and I pray constantly for your family ~ we know He is the almighty healer and through him all things are possible. Much Love and Hugs follow you today and in the days to come. Patricia

  10. A FB friend posted your blog on her wall and I have been following Hope's struggles since.
    This morning, I told her story to my Bible Study group (CBS) and we offered Hope in prayer! Just wanted you to know that many people are prayer for your family in Burlington and all of southern Ontario. Prayers.

  11. i am praying for you today and the meeting. may you sense the circle of support gathered around you.