Tuesday, 23 April 2013

Doctor Jam

Hope's bed was like a traffic jam of doctors today!  I walked in as the team was rounding on Hope and did not have a minute to wake up.  So many changes happen after a transfer and it's almost impossible to keep up.  Hope's TPN (liquid nutrients) were stopped this morning and they're going up on her feeds and attempting to concentrate them once again.  Something Calgary decided recently was not a good idea and had started the TPN as a result.  We'll see what happens.  As soon as the rounds were finished, the stream of doctors began.  Today I met with; Pulmonary, GI, Genetics, Infectious Disease, Neurology, the transplant social worker and the transplant coordinator.  On top of that, Hope had a long echo, ECG and other small tests done.

Hope is now on the on-call list for the OR tomorrow.  If the scheduling works out, she will be taken for a liver biopsy and her Varices treatment.  Please pray that she tolerates the anesthetic well, is extubated easily and able to come back up to ICE and does not need to go to PICU.  I'm never very excited about sending Hope to the OR without Shawn here, but I'm thankful I will not be alone.  Tomorrow afternoon I'll be sitting down with some of the transplant team to get more details about everything going on as well.

This is national awareness week for organ donation and transplantation.  This is good and bad.  It's bad because many of the transplant doctors are away at a conference and we will not get a 100% answer about whether or not Hope is being listed until next Wednesday.  It is good because the number of pediatric hearts donated each year has gone down and awareness needs to improve.  We need people to think about it and to be aware of the gift that organ donation is to the families that are waiting for organs.  Perhaps this very week a family will be touched and consider organ donation, a family that may gift a heart to Hope.

At this point, it looks like once everything is finished with Hope's work up, we'll be sent back to Calgary until we hear what's next.  Shawn was thankfully able to change our theatre tickets, but there was only one other date available, May 14.  That means I have to be home by then!  We'd still like to get back to Calgary as soon as possible, but I won't feel as stressed about it being late Thursday night or Friday now.

I'm exhausted and somewhat happy to be sitting alone in the basement apartment for the night.  I miss Sadie and Shawn, but don't have a lot to give after today and appreciate the alone time to unwind and rejuvenate for tomorrow.  I'm praying Hope will be called to the OR in the morning so we're not waiting on our toes all day.  You never know with these things though.  Thank you for continuing on the journey with us.


  1. Good morning Amy : I am so pleased to hear things have once again taken a good change for Hope. I do not have the opportunity to read your blogs daily so in less than a week so much has happened with Hope. My thoughts & prayers will continue with you all. As I ask God to provide Hope with a new heart and to touch her young body with his hands , I pray for God to bless Shawn & you with the strength to carry on. May you all be back together in your new home soon. Sadie is just a wonderful child as you describe her & heck for all she has gone through herself , she sure stands tall. Hugs to you all & may each day bring more happiness for your family.

  2. Praying you mount up with wings like eagles Amy

  3. Praying for you Amy. You must be so overwhelmed!

    Naomi in Ontario

  4. Prayers always coming your way for little Hope!! Miracles can happen & have happened!! I wish all the best for you Amy & Shawn & Sadie & oc corse for your precious little girl!!