Wednesday, 30 January 2013


It appears we are not able to have a drama free day!  Today was once again full of drama.  In rounds we were told that Hope's surgery for tomorrow is cancelled.  I was obviously upset about the change and asked to speak with Dr. Ross directly.  The cardiologist agreed to have Dr. Ross come see me and felt that it might help.  Dr. Ross was wanting to wait to get a second opinion from Boston and Toronto.  Although this sounds wonderful, he also said he thought they would tell him what he already knows.

Shortly after this the nurse came to tell me that the OR had called and confirmed a surgery time of 7:20am tomorrow.  I was thrilled!  Then 10 minutes later the OR called to cancel that time.  The roller coaster never ends with this child!  Dr. Ross came by at noon to say that he was too busy to sit down and properly talk about things so he would be back at 4pm.  He arrived early at 2:30 and sat down with me to talk about Hope's surgery.

An emergency case came up during the day and Hope's spot was no longer even available, she would have been bumped regardless of Dr. Ross' hesitation to do the surgery.  I voiced Shawn's and my opinions about waiting to do the surgery.  We want to do the surgery while her PICC line is working, and while her body doesn't have an infection.  This surgery is the only thing keeping us in Edmonton and apart as a family.  Once this is finished, there is nothing to keep us from being transferred back to Calgary to continue Hope's care there until she can go home.

Dr. Ross agreed with all of my concerns and felt that Hope could benefit from going into surgery.  Unfortunately he has 10 other families in the same position.  He was clearly angry about the position he is in, not at me, but at the government.  I totally agree with him and am a witness each day to how bad the situation is.  The Stollery has the highest success rates for cardiac surgery in North America, but you would never know it.  The richest province in Canada is home to one of the worst PICU's you've ever seen.  The infection risks are crazy high because the beds are feet apart!  They need a new hospital in Edmonton desperately.  Apparently there are planned budget cuts for the Intensive Care in order to open more clinics.  This is going to be devastating for families like ours.

He has agreed to come into the hospital on Sunday, even though he's not working, in order to operate on Hope.  This is obviously still dependent on a PICU bed being available and other logistics.  If this date is bumped, Hope will be taken at the first available slot next week.  We are praying that it works out for her to go on Sunday and that we're not waiting until next week.  It's sad to think that so many heart children are left untreated for a time because of lack of nurses, bed availability and OR time.  One day I should go back to school and get into politics, I have a lot to say!  We all think tax cuts sound amazing, until we need services and the government can't afford to provide them.  I would surely pay higher taxes in order to have my child receive the care she needs.

After sitting down with Dr. Ross I asked to see the cardiologist.  Hope had been sleeping almost the entire day.  I was worried that something was wrong, she was too settled, too sleepy and lethargic.  They agreed that something was weird and drew more blood from Hope's PICC line.  Everything came back normal.  At 4:30 she continued to sleep and was slow to respond.  The doctor was getting more worried, as was I, and ordered a CT Scan of Hope's head to make sure she wasn't bleeding.  By the time Hope had the CT and the results were read and reported back to me, it was 7:30pm.  The resident stayed late just to give me the results, it was truly compassionate as she knew we were worried.  The scan was all clear.

One of the ICU doctors came up and suggested that with her liver issues, perhaps the anesthetics from yesterday are lingering longer than they should be.  This is possible, but after 15 anesthetics it's hard to be sure if she's doing something new or if she is showing signs of a problem.  Seeing as no one had any new ideas of what to look for, Hope will have to show us.  If she perks up tomorrow we'll know that she was just sleepy.  Please pray there is nothing new going on.

Please also pray for my mom.  She was extremely tired all day today as well and we worry she could be getting sick.  She went straight to bed and is hoping that sleep will cure her.  I figure if we get the masses praying, she may wake up feeling like a new woman!  I really need the support and would struggle to be alone at the hospital and to know that my mom came all this way and has to be sick without the comforts of home.

Today was an incredibly long day.  I cried as I pleaded with our surgeon to operate on Hope.  I sat for over an hour to find out if my child was bleeding from her brain.  I planned to leave the hospital at 5 but left closer to 8.  I'm tired, I need to get back to Calgary where I have a more normal routine going and can be with Shawn and Sadie.  I had told Sadie yesterday that she would see me tonight, and once again she went to bed without kissing me goodnight.  This is not easy and we would not have the strength to continue without the power of God and the prayers of his people.


  1. Hang in there Amy. We are praying more for yourself, miss Hope and the rest of your family than you could possibly imagine. I would give anything to absorb the physical and emotional pain that the two of you are enduring. I have incredible faith and have been feeling an overwhelming sense of comfort these past two days that God is continuing to protect your beautiful daughter and that you will have her home with you very soon. I have so much faith that this situation will improve, despite these setbacks. I can feel God's love and promise you, that everything is going to work out. You're going to have an amazing life to look forward to with Hope by your side. She is so incredibly lucky to have such an amazing mother, so please continue to be strong and know that you have so many people that love you both. You are in the thoughts and prayers of so many people and I have seen from experience that there is nothing more powerful in this world, than collective prayer.
    We love you and are thinking about you constantly.

  2. Praying praying praying for you and your family and ur little angel hope :) I pray that today was just a sleepy day in preparation for her big surgery on Sunday :) I can't stop thinking about you and your family even though we've never met and I just stumbled across ur blog!!! You should pat yourself on the back because I can tell through your blog what an AMAZING momma you are to that little angel :) and your other angel too :) sending many many many positive thoughts and prayers your way tonight and every night :)

  3. I pray that the sleep Hope needs today is helping her regenerate and is her way of showing everyone she is healing, her tests results are confirming this and tomorrow she clearly shows you that she is stronger and is overcoming obstacles, so that her support team clearly understands that she is guiding everyone to make clear, and precise decisions, calmly. Day by day Hope is stronger and thriving and wIll clearly show when she is ready to be home with her family. I also pray that Shawn and Sadie find the means to be with Amy and Hope whether it be in Calgary or Edmonton that all financial responsibilities are taken care of and that this allows them to come together as a family and have the reconnection they so deserve. Thank you! Amen.

  4. Karen Richardson30 January 2013 at 23:16

    Continuing to pray with faith for Hope's healing!! Also thanks and guidance for Dr. Ross. And strength, peace & joy for you & Shawn. I praise the Lord that His plans are FOR Hope! :) Such a privilege to join with you in this.

  5. Sending all best prayers and thoughts from Ontario.

  6. Our church has around 3,000 in attendance and the sermon this past Sunday was on prayer. We could write prayer requests on huge sheets of white paper hung on the walls. I asked for prayer for Hope.
    Still praying every day...

  7. Praying for you all! We love you sister and we love your family but it pales in comparison to the incredible love God has for you. Rest in Him. Hugs, Liz

  8. Hi Amy, the kids and I pray for your family each day. Thanking Him for our meals, healing for Baby Hope and help to those without a home in this cold, are Emeline's persistent requests to our big and mighty God. I am learning how to trust God, and I'm sure you are too. It's a daily, even hourly decision to guard my thoughts and give my concerns to the Lord. He rejoices when we do and in turn we amazingly experience a peace, joy and hope that we can't even understand. I'm kind of preaching to myself, but I want to encourage you too. I physically yell out "I need you Jesus!" and He whispers back, "Trust me, I've got this. You'll see." This happens so often I'm often embarrassed when I hear him say the same thing...oh yeah, God. Sorry, I forgot again.

  9. Your amazing strength and faith is such an inspiration. I continue to pray for you and your dear little Hope.

  10. A sympathetic Reader31 January 2013 at 13:52

    I feel for you and Hope. My son has HLHS and we have met many other mothers and friends along his journey with the same cardiac problems. Although I do not agree that the Edmonton Stollery NICU and the PICU are the worst places to be, I am sorry you feel that way and have had such a horrible experience there :( There are many HLHS babies in their that are denied the surgeries because of various reasons- I hope it gives you strength knowing that you still have the option! Her name in itself shows she's a fighter. You may/may not know Lukas who was there for over a year- if you do know his story, knowing that if someone like him with all of his obstacles- been giving the option to "let him go" many of many of times- is home now. I know his story gave me hope about my son. I wish that Hope gets this surgery, stays infection free and I know you can't wait for the day you can bring her home :)

    1. I'm sorry you have completed misread what I was saying. Perhaps it was not clear enough. Dr. Ross was the one telling me that many children are denied their surgeries (not forever, but for a few days or weeks) because of the lack of beds, lack of nurse and other such logistical problems. I have no issues with any of the staff at the Stollery, they have saved Hope's life many times. There is simply no denying that the facility is old, needs to be upgraded or replaced. The doctors will be the first to admit that and want parents to get angry about it in order to force the government to fix it.