Thursday, 6 September 2012

Chips for Life!

After the post last night I called the hospital to see how Hope's extubation went.  In true Hope fashion, it did not go well.  They were able to remove the central line from her blue leg and had the IV in her foot running a blood thinner to keep it from clotting off.  They were all ready to extubate her, even had her on room air, and then she coughed.  It sounds like a small thing, but she coughed up some mucus that clogged her tube and blocked her airway.  Her sats went down to 22 (her average is 75 and yours is likely 100).  As a result, they had to bag her every hour through the night and decided to extubate her in the morning instead.

Hope was extubated at 8am this morning and remains on a high dose of oxygen, but doesn't have the horrible tube down her throat.  When the doctors came at rounds and told us that Hope would be moved up the ward today, my mommy claws came out and I told them I wasn't comfortable with that until an ultrasound was done on her leg and the surgeon came to see me.  I think they remember me from last time, so the ultrasound was ordered.  By the time the ultrasound happened it was already 2pm and it took a full hour as Hope doesn't lay very still.  I think she was having trouble as she came off the morphine and she was also in a bit of pain.  She was restless all day and didn't seem like herself.  I overheard the ultrasound tech on the phone with the radiologist before she left.  I've learned to eavesdrop when they discuss Hope, as they never tell you everything and it's easier to get the information you want.  She was informing the radiologist of all the clots in Hope's leg.  This was obviously very disappointing news.  We have yet to meet with the actual doctors about this and don't know how bad it is or if it is fully clotted off at this point.  That only leaves 2 remaining limbs with access to her heart for a central line, she still has at least 2 surgeries left and we are fearful that she will continue to clot off her main arteries.  Please pray for a miracle.  Hope is being worked up for a clotting disorder here in Edmonton.  If she has it, she will remain on her blood thinner injections for the rest of her life.

After the ultrasound, the nurse was getting Hope's bed ready for transport to the ward and I spotted the surgeon!  I had him brought over and asked my main question, "will you do the Glenn and, if so,  when?"  He agreed that it should be done while we're here and is going to get her scheduled.  We are not getting too excited until she IS scheduled as things change quickly around here.  We may get more information tomorrow morning after they do cardiac rounds.  Dr. Ross saw a note I had written on Hope's board on the wall in PICU.  Under "goals" I had written, "to convince Dr. Ross to do the Glenn"(that's her second surgery).  He took the pen and wrote, "OK-for a bag of chips!"  I might head to Costco and buy him a life time supply!

Once Hope got up to the ward she was so tired and seemed more relaxed.  She fell asleep and finally seemed to rest.  We went back to the house for dinner and my mom returned after dinner so Shawn and I could put Sadie to bed.  I'll head back to the hospital soon to spend the night.  I'm praying her Glenn happens early next week and I don't have to live in her room for too long.  We seem to continually get new 'surprises' with Hope's condition.  I truly pray that her Glenn is routine and there is nothing out of the ordinary that happens.  I guess when you're extraordinary like Hope, you just can't do ordinary any longer!


  1. Hi Amy,
    I'm praying that Hope gets her Glenn just as soon as possible and that it goes as well as possible and that all roads continue to lead to health. I am so in awe of your dedication and strength. I want to ask if you if it would be all right if I link to your blog on mine ( I have been processing our journey there, which I realize is a different story. But I would like to share yours as a way of honoring parents like you and babies like Hope (my true heroes now and always). I'm working on a post about other HLHS babies fighting for their lives. It's been three months since we lost our son and I can't stop looking for these other stories and to know how these other babies are doing. I'm pulling for you all and praying will all my might. And/or if there is another way to build community around you and Hope and your family, please let me know.
    Thank you for sharing your story,
    Jenn <3

    1. Hi Jenn, feel free to share our story, we are more than happy to have more people praying for our little girl!