Saturday, 19 January 2013

Fresh Set of Eyes

The emotions I felt in the matter of seconds was overwhelming.  During morning rounds the nurse popped around the corner and told me that Calgary had a bed for Hope!  We would be going back to Calgary today.  As we celebrated, the doctor spoke up and told us not to get too excited.  Dr. Kantor is a new cardiologist to the Stollery.  He just transferred from Sick Kids in Toronto.  He had spoken to another cardiologist in Edmonton that we have worked with previously and truly respect.  She felt that Hope's heart cath results were more serious than we originally thought.  She did not believe it was safe to send Hope back to Calgary without further investigation.  I was told the option was ours and to speak with Shawn about it.

I called Shawn and shared the doctor's concerns.  Usually choosing what is best for Hope comes naturally.  Today, I was so tired of being away from my family that it was a bit more difficult to make the right decision.  Thankfully, Shawn was stronger than I and encouraged me to stick it out for Hope and allow her to receive the care she needed.  So we have made the decision to stay in Edmonton until further notice.

Hope should be going in on Monday for a CT scan.  We're going to look at options for her that would not require general anesthetic.  Please pray that the doctors will find a solution that is safer for Hope.  The next steps will depend on those results.  This delay is going to cause us to miss Hope's varices procedure on Tuesday in Calgary.  As a result, Hope will be having that procedure here in Edmonton on Tuesday or Wednesday likely.  We don't have specific dates at this point.  

After meeting Dr. Kantor this morning, I felt that he could be an extremely valuable addition to Hope's care.  I sat down and asked him if he would be willing to go through Hope's file and give me an outside perspective on her.  He agreed to do this and spent the morning going through her file.  In the afternoon he came back to speak with Shawn and me.  (Shawn drove up in the morning with Sadie for the weekend).  

Our meeting was extremely encouraging.  Dr. Kantor feels that Hope is more likely to survive her childhood than many others have suggested.  He feels that Hope needs to get out of the hospital environment and back into our home as soon as possible.  Her growth is vital to her healing process and she simply does not gain weight while in hospital.  This is a common complaint from families and is difficult to do anything about.  This gives me a renewed strength to push to get Hope home.  We have a lot of hurdles, but it is a gift to have someone believe in Hope and encourage us to keep pushing.  

These delays and the thought of going through more surgeries without Shawn was really difficult.  I finally did something I've been working very hard to avoid.  I called my mom and asked her to come back.  I feel bad taking her away from her life once again and having her drop everything.  I don't like the idea of my dad coming home to an empty house either.  Our family has been amazing through this journey and has been an incredible support on Shawn's side as well as my own.  My mom will arrive tomorrow night and I find this very comforting.  

Please continue to pray for our family.  We have some wonderful volunteers coming to take some time with Hope tomorrow so I can enjoy Shawn and Sadie while they're still here.  Sadie is still limping and will be heading back to the doctor next week.  Please pray that her leg would completely heal before they need to re-cast her.  It will be difficult to spend the week away from Sadie again, please pray that I get home before next weekend!  If they find something serious with Hope's aorta, they may need to do another open heart surgery.  I need a serious dose of strength to get through that - I'm praying that is not the case.  


  1. Thank you, Jesus, for Dr. Kantor!!!! What an answer to prayer. Praying for all the specifics you mention here (and previously)... and thanking God for a fresh set of hopeful eyes that have authority to give directives and make plans for Hope's care. I know this continues to be unimaginably exhausting and hard on so many fronts... and I pray you get to go home with Hope SOON. until then, I pray for more gifts like Dr Kantor and for the very best care for her to help her get home ASAP.

  2. oh, and WELL DONE on asking Dr Kantor personally to look at Hope's file. What an awesome mama and advocate. your courage and boldness is beautiful, especially in your exhaustion. hope you rest well tonight, warrior.

  3. Thank you Amy for accepting my friend request on Facebook. I stumbled across you blog when a friend posted a thread on facebook and I have been following it ever since. As a mother of a new 3 month old baby I can only imagine the fear you felt at that ultrasound appointment when they told you little Hope's heart was not ok. I have read your entire blog now (cried through most of it!) and have added your wonderful family to my daily prayers. I will continue to ask Jesus to meant Hope's body and use her story to His Glory! God Bless you Amy, Shawn, Sadie and Hope!
    Kelly Chapell - Ontario

  4. I'm so happy to hear you have a new cardiologist to look at Hope's file. I feel so lucky every day that my son was under the care of amazing nurses and doctors at Toronto sickkids. I know how hard it is being away from family while your child goes through surgeries, I've done it. I'm still wishing for a miracle every day for Hope and your family but it seems you're a little closer to it today.

    Courtney in Ottawa

  5. We are always thinking about you guys and will continue to pray for strength for your entire family. BTW I think Step knows Dr Kantor.

  6. Some ideas for feeding Hope. I have read your whole blog in the last three days and I am thinking much of the GI problems are because her formula is not real food. I hope she is doing better on the food gruel. Will be following your blog and praying for your family.

  7. I also wanted to say I was surprised to see the docs are giving her Tylenol as an option for pain, considering its track record for liver damage. Just a thought.

  8. Actually, that is something my husband mentioned to me also when I updated him recently on Hope's progress. We are not medically trained but if the liver cleans the blood and the blood is constantly infused with high levels of medications and painkillers, could this not explain her liver troubles? Obviously Hope has needed medication and painkillers but perhaps there are alternatives that would be less troublesome for her liver? Just a thought...

  9. Dr Kantor was my sons cardiologists at sick kids. You are in very good hands. OUR prays our with you.