Monday, 22 April 2013

Fear of Flying

Have you ever remembered something at the worst possible moment?  Today as the nurses were getting Hope all set up for transport, I had a memory that I had never connected before today.  Over 6 years ago, I was at the gym with my friend Liz when we heard a massive explosion.  Being the nosey people that we are, we began walking towards the commotion.  It was impossible to tell what had caused it as almost nothing remained but smoke and small debris.  We later found out that a medical flight had lost control and in an effort to keep casualties down, the pilot had aimed for a closed BMW dealership.  The plane was completely gone from the explosion and the pilot, a doctor and a nurse lost their lives that day.  Not a memory you want to have when your own child is being strapped into a stretcher that will take her on a medical flight.  It took me to a weird place and yet I felt oddly superstitious about sharing my fear with anyone until I knew Hope was off that plane and safe.  I had a slight distraction when the EMT informed me that she followed the blog and knew all about Hope.  That is always very comforting for me.

I started the drive to Edmonton as soon as Hope was gone.  I stopped quickly for lunch and made it to Edmonton in decent time.  Hope arrived when I was only half way here and was able to spend time with some friends of mine.  There is always a great deal of confusion when Hope is transferred.  So much is missed and there is always a lack of information.  No one had any idea of when Hope needed meds, what meds, what had already been given and all those things.  The Calgary team had told me to NOT let anyone change Hope's feeds, yet they were changed immediately and I was told this was better.  It's difficult to argue unless I'm sure of something.

Hope's medications are not compatible on paper to run through the same PICC line.  They wanted to start an IV but I fought to have the meds stay the way they were.  After 4 days of running them this way, they are clearly compatible enough.  I was extremely angry when shortly after leaving the hospital this evening, they put in an IV.  I called and spoke to the nurse in charge and shared my deep frustration.  There had been some miscommunication among the staff.  There is now a large red note in Hope's file that says I need to be called before any IV's are put in.  I don't want this IV replaced when it fails tomorrow.  It's not fair to Hope, it's not a good long term plan when they don't last and we are damaging her veins for no reason.

Today Hope spent 2 hours having much of her body ultrasounded as part of her transplant work up.  Tomorrow she will have a great deal of tests done as well and will be examined by numerous doctors.  I am anxious in some ways, but I feel like I'm doing alright.  I think I am mostly worried that we will go through all of this, and they will decide she's not sick enough to list her yet.  I disagree, but that won't change anything.  Hope is stable, I would agree with that, but she's not stable enough to have any quality of life or go home.  To me, that means it's time to do something and if surgery is not an option and she won't improve with time, why not list her now?  I pray I'm wrong and this is a meaningless concern, but it's there in my mind.

I had a pretty odd introduction to the transplant doctor, if you could call it an introduction.  He walked over with the transplant cardiologist, that I've met numerous times, Dr. Dyck.  Dr. Dyck spoke to me a bit and checked out Hope.  This other doctor never spoke, stared at me the entire time and never introduced himself.  It was very awkward and will hopefully not be like that every time he comes to see Hope.  I'm going to tell myself that he was deep in thought and hope the next experience I have with him is less uncomfortable.  Thank you to everyone that continues to pray us through this difficult week.


  1. Glad you both made it there safe. Praying...

  2. Definitely praying for you, Hope and your family!!!

  3. still praying for all of you often!

  4. Cheryl, Montreal23 April 2013 at 18:10

    There are many people praying and also entire prayer groups who continue to keep Hope and your family as well as the medical team in their prayers. Keep strong and don't give up fighting for Hope's new's around the corner and a little beyond the bend..sending hugs and prayers for each of you!

  5. please read
    This is a missionary family with a rock solid faith we can all grow from . Tragedy recently hit their family when their little girl, 1 year old, passed away from a brain tumor. The Lord is making beauty from ashes. Please go back to the beginning of March and follow their story. It will give you hope. There is a link on there to mom's blog as well. Her most recent post will bring you hope.
    Praying for you.

  6. As always, keeping you and Hope and your family in my prayers. Hope is such a little fighter, has beat all the odds so far, I am praying that liver tests will be okay and she can have her transplant!!