Tuesday, 15 January 2013

Edmonton Delay...Take One

We have our first delay up in Edmonton, hopefully the last!  First I need to tell you about the crazy morning...
Sadie had an appointment at the hospital this morning to look at her fracture.  As I was driving to the hospital with Sadie, I found out that Hope was going to be transferred to Edmonton in the morning.  I talked to the receptionist at the bone clinic and explained that I was in a huge hurry as my daughter upstairs was about to be airlifted to Edmonton.  I wasn't able to see Hope on Monday and was desperate to see her before she left.  They were amazingly understanding and took Sadie in right away. They X-rayed her leg and said that the fracture is healed and looks really good.  Unfortunately it can be impossible to see on toddlers and it may still be there.  They removed the cast, Sadie was complaining a lot about it bothering her.  It made sense when we saw the sore on the top of her foot from the cast rubbing.  She was not a fan of the removal process at all.  During this time my phone is ringing as the transport team arrived to take Hope and I needed to sign consent.  I didn't want to leave Sadie so upset, and wanted to get to Hope.  I was truly torn.

The doctor quickly finished with Sadie and told me that she needs to be walking on her leg within 48 hours or she'll need to be recasted.  Sadie is not walking on it at all so far and keeps telling us that it still hurts.  Please pray she's doing jumping jacks by tomorrow night!

I ran out of the office with Sadie in the stroller.  I hate to run, but I was booking it down the halls to get to Hope's room.  I could see the transport team at the end of the hall when we arrived and pushed through to get to Hope.  After I got her in my arms I started to cry.  I had wanted to see her so badly and was overwhelmed that I had made it, just barely.  I signed consent and she was quickly loaded up and taken to her VIP plane once again.  This little girl is going to have a rude awakening when she has to fly commercial airlines in coach and on my lap!

I went back to the house with Sadie to drop her off and pick up my stuff before starting the long drive to Edmonton on my own.  Thankfully we made the choice to have our home care nurse come up to Edmonton as well.  She can still do the night shifts here through our insurance, we just had to pay for her travel costs.  That allows me to not stay at the hospital 24/7 and to get more of a break.  I was also able to stay in the basement suite we had last time.  This is a huge blessing as RMH was full and hotels are so poorly located here.

I arrived in Edmonton and within the hour was told that Hope would NOT be having a heart cath on Wednesday, she was bumped to Thursday.  This is so frustrating, we could have spent an extra day in Calgary and I would have had more time with Sadie and my friends visiting from Colorado.  I would have been able to have dinner with Shawn too!  Shawn laughed when I told him, he knows to expect the delays and isn't surprised when they happen.

Hope will be taken as the first case on Thursday, at 7am!  I am not happy about the crazy early morning  or the fact that my normal routine of going to Earl's for lunch to stay distracted will not work!  They told me to expect Hope to be in the cath for 3 hours.  It sounds like they will need to go through her neck, this is very risky if it clots.  Please pray against clots, this could easily kill her as it takes blood to her brain and the other side is already clotted off.  They think they may need to dilate her pulmonary arteries, this is also very risky.  If they cause a tear, Hope will be taken directly from the lab into the OR and will have her chest opened in an attempt to fix this tear.

As you can imagine, I am not very excited about going through this without Shawn.  I am praying that nothing bad happens and I simply have to call him after to let him know she's ok.  I'm not sure how I will survive receiving bad news without my other half, my stronger half.  Please pray that everything is very routine and we don't have ANY complications.  I'm still hoping to make it back to Calgary by the weekend.

Tomorrow is going to be a pretty boring day of sitting around the hospital with no purpose.  We now have an 'extra' day and will just sit around waiting for interesting people to walk by or nurses to entertain us.   I sure hope that Hope is in a good mood and is ready for a mellow day after all the excitement of today.  They have put Hope in ICE, although I'm not sure why.  We often beg to get into this room in order to get better care.  We have no reason to be in there now, but are thrilled to have the hands on nursing care that we prefer for Hope.  It was sad to walk in and realize that 2 of the 3 other kids in the room were ones I knew.  Both families were here when we arrived last time and have never been able to leave.  I am forever reminded that we are blessed and should never become so focused on our own issues that we lose sight of the fact that others are suffering as well.


  1. Hi Amy,
    We haven't met, I was introduced to your blog by Heather VanBoom. I'm a medical student at the UofA and I have been so thankful to be able to read about Hope and your family. Your writing is honest and I feel like I know you and Hope, not to mention so many more aspects about patient care and faith and medicine. I'd like to ask your permission to share your story with my class by posting the link on our (closed) facebook group. Please also let me know if I can help you while you're in Edmonton, whether it's food, company, errands, anything. You can reach me at aaydewalle@gmail.com.
    Thank you,
    Alyson de Walle

  2. We will get through these next couple days together friend! <3

  3. If only you had a video camera on your head, of how things go in your life? What a great movie that would be, what a nightmare for some of us!
    So sorry for all of this "extra" stuff, and dear little Sadie, and her leg! Wow...so much in parenting, and loving 2 children.
    Not sure how you have done this, but do know that you have done it with the Lord. He has been your strength, and help in your time of need.
    You are blessed to have Shawn, and for that God is so good. He knew that you needed a man that could laugh at the little things, and be your strength when you need a shoulder to cry on, or just to be held.
    Your life has not been one that most of us would want, but for some reason, God has given you 2 beautiful little girls that require a lot of help and love.
    Praying for you in the next few days that God will be near you, and allow you to rest up for the heart cath. That Hope will be content with her new surroundings, and that Sadie will feel the love of people that she is with, and that God will give Shawn an extra boost of energy to deal with all of this, and work.
    Praying non stop for you and all your family.
    with much love....

  4. Praying VERY hard for this next step!

  5. Sending love and prayers with hopeful tears in my eyes.

  6. Hi Amy;

    You don't know me, but I'm an acquaintance of good friends of yours, and I've been following Hope's story faithfully for the last several months. When I read your post today, I started to cry. I just can't imagine going through what you are going through and still maintaining the positive attitude that you (and Shawn, and Sadie) have all maintained. You are such an inspiration! I will be praying for all of you, but especially dear little Hope, tomorrow morning. Bless you and your family!

  7. Praying. Praying. Praying.

    And will be praying extra hard tomorrow morning!

  8. Praying for you and your precious hope xox praying that tomorrow is the start of hopes road to healing xox again I thank you for your honesty! Your blog and your words are truly changing people's lives :)

  9. Following your story over the past little while and to tell you the truth, I'm wondering why I get so upset over the little things that go wrong in my life when you are going thru all this. My heart breaks for you and Shawn and your two beautiful girls. God is good, God is amazing and I truly believe he has a plan for each one of us and he only gives us what we can handle. My prayers are with you and your family. I pray that you finally get some good news.

  10. Hi Amy.
    My name is Jennifer Lekisch. My child is also in ICE across the bed from your baby. His name is Jaydyn Lekisch and he is battling for his life as well. He was diagnosed with Down Syndrome at birth. He had a AVSD and 2 VSD's. He has his sugeries on Xmas Eve. He is still struggling to recover. I pray your baby is going to do well. Please stop over and say hello. It has really helped having other Mom's who know what I am going through.