Wednesday, 26 December 2012

No Edmonton??

Things are forever changing in our world.  Today the cardiologist was saying that they're thinking they might just wait on Hope's heart cath now.  She is doing better medically and although they cannot explain the fluid on the her lungs, if they can control it, they're going to wait.  The procedure (heart cath) is risky for Hope and the chance of clotting is so high that we hate to use one of her access points if we don't absolutely have to.  I'm feeling okay about the idea of waiting, I just hope we don't end up having to do it in a few weeks and delay us getting home.

Hope is smiling more once again, is sleeping at night and taking longer naps during the day.  Previously she only took short cat naps and was often very grumpy, likely being overtired was the cause.  We are still only at 6 mls an hour of feed, but they plan to increase her feeds a bit this week to see how she does.  We really need to get Hope off the liquid nutrients and get rid of the PICC line.  Each time the nurse flushes the line, Hope screams.  We are running out of time and need to get to a place where we are no longer relying on it.  In order to protect the line, the nurses are no longer allowed to draw blood off of it.  Hope is now getting poked for blood twice a week minimum.

A huge praise report, our insurance company has finally approved us to have our wonderful home care nurse in the hospital with Hope.  Previously they would not allow us to pay our nurse while Hope was technically under nursing care at the hospital.  They have clearly never gone to the hospital to see how stretched the nurses truly are.  If they did, they would see that having consistent care for Hope is very important and parents can not be there all the time.  This will take some of the pressure off of Shawn and me.  We are really excited to have her start working with our family again, Hope loves her!

Hope has a few fun visitors coming for a visit this week, that's always nice for me!  It makes the hospital much more exciting when I have some good company, other than Hope.  Thank you for continuing to pray for Hope.  Please pray for her doctors, that they would have wisdom in making a final decision about her heart cath.


  1. Praying! Thanks for displaying your faith - and letting us carry you to Jesus... It's a true privilege.

  2. So glad that Hope has been doing better, and not so irritated with all the tubes, IV and PICU line! Her life must have slowed down a bit, so that she could relax, and not expect someone to come and hurt her. I am sure looking through her eyes, the world seems like a different place!
    So nice to see the smiles, and the happy eyes! She is so sweet!
    Glad that you will be having some visitors to see you, and you will feel normal again with them, having some fun, and feeling like life is going to be ok.
    I am sure that Hope would want you to have some fun, and laugh, joke, and enjoy the time with your friends. So glad that they get to meet her.
    I pray that God will continue to give Hope many more pain free days, and days were she isn't struggling to breath. Just can't imagine.
    Praying for you all there. So glad that you got through Christmas, and that there is HOPE for tomorrow!
    with thoughts and prayers from a distance!