Tuesday, 9 October 2012

Going for the Glenn!!!

Today has been an important day in our journey with Hope.  The morning rounds started with lots of talk of discharge as it was written on Hope's chart from the weekend.  I then mentioned all the things we needed; a feeding pump, oxygen, an MRI and a few other things.  The group at rounds knew all these things and were likely confused about how we would discharge Hope as well.  It got us talking about things and putting them into motion, that's the important thing.  

GI was consulted again and Hope will need to have another MRI before discharge.  They want to take a look at the collateral veins that are forming out of her liver to get around the clot that is there.  If they form on thin and weak veins, they could cause a bleed that would be very dangerous.   They need to evaluate these veins and make sure they're safely moving Hope's blood.  We don't love the idea of an MRI after our last experience in Calgary with an MRI.  This MRI wouldn't require Hope to be fully asleep.  They plan to sedate her and keep her fairly still instead.  This is obviously a much better option for her.  The MRI will need to be done while Hope is an inpatient regardless, just to make sure she does well after the procedure.  

Home Nutrition came and verified that Hope will be receiving a pump here in Edmonton to go out on.  They are coming tomorrow to train me on using it and get everything set up with that.  Tonight she's going to be hooked up to an oxygen test that will help get the ball rolling for her home oxygen.

I spent the afternoon snuggling with Hope, taking her for a walk around the hospital, reading and trying to stay distracted.  I might have eaten enough skittles to feed an elementary school in the process!  It made the day go by and I didn't feel as anxious as I'd thought I would.

Around 4:30 I started watching for a cardiologist to come and give me a report from the meeting.  Instead, Hope's surgeon walked into the room and began washing his hands.  He came over and started looking Hope over and asking me questions about her current health.  Dr. Ross then said that they don't want to wait for Hope's surgery any longer.  They've decided that the cold and flu season is too risky for Hope in her current condition.  They want to wait until the beginning of November to give her body time to fully recover from her last procedure though.  She will be scheduled for the week of November 5th, no exact date yet.  If Hope's colour continues to degrade or her oxygen levels are getting lower, they'll simply bump up the surgery date and take her in immediately.

That means our family will be settling in to Edmonton for some time.  It's tempting to drive back to Calgary to sleep in our own beds and have the comforts of home.  We know that it's best for Hope to stay with the team she's been working with for the past two months and not to bounce around a lot.  She'll continue to be followed closely by the GI and Cardiology teams here until her surgery.  We are thankful to have a plan and look forward to spending time with Hope out of hospital, no matter which city we're in.  

Thank you to everyone that prayed for us as we waited for this decision.  We feel confident that God was in control and that this is the best plan for Hope.  We should all be sleeping at the same address by the end of the week!  


  1. great, awesome news!

  2. Gross understatement - but we are ridiculously happy over here!!! :)

  3. So happy for you to receive this wonderful news! We may be strangers, but we come before the same Father in prayer and consider it an honour to be holding you all up in prayer as you continue this journey of hope with your beautiful little girl. We will be praying over the next few weeks that God will put His hand of protection over little Miss Hope keeping her healthy from colds and flu. What a wonderful answer to prayer that they will be doing the GLENN sooner rather than later. We will be praying for you and Shawn specifically over the next few days as you prepare to take her to the Ronald MacDonald house with you...praying for peace and excellent training so you will feel comfortable with her care. You will do well...you are smart and have proven over and over that you can detect the slightest change in your little daughter often before the medical staff. God will help you with this and give you the wisdom you need one step at a time. One thing I have learned over and over in my life...He does not give us the grace and strength for tomorrow until tomorrow...but, it is always there when we need it...moment by moment. He never ever lets us walk alone and He will carry you each moment as you care for you precious little daughter. We will be doing our part covering you, Shawn and Hope with prayer.

  4. I check in on Hope nearly every day and was so happy to read this amazing news this morning!! <3<3<3

  5. Great news, we will continue to pray for Hope and your whole family. Praise God for all He's done!!

  6. Dear Father in Heaven
    We have not even once felt doubtful of your plan. I confess and ask you to forgive me for sometimes feeling fear, sometimes feeling anger at what Amy and Shawn (and their families) were having to cope with, sometimes feeling impatient - like...MAKE HER BETTER! - , but never doubted your plan. I just wanted to know what it was. Thank you thank you thank you for giving the Edmonton team the courage to take a stand and to prepare Hope for the Glenn. Please keep her healthy leading up to it and give the surgeons and support team wisdom as they prepare her. Please keep Amy and Shawn rested and trusting and please give Hope the full life that she's been fighting so hard for. And did I say thank you? I do thank you and honour you for your faithfulness to this family over the past several months. May they feel your peace!

    1. So beautiful Kathy - the echo of my heart as well!

  7. I have been following your blog. I have a 10 month old at home and can't imagine what you are going through. I couldn't wait to read the blog this morning to see what happened in the meeting yesterday. God really is good! I am so happy for you and your family that the surgery is going to go ahead. Praying for Hope!

  8. Yay!!!! So excited for all of you. I imagine it feels like you are seeing a bit of light at the end of the tunnel. Praise God for His faithfulness and His work through the surgeons and medical team that surrounds you. I truly believe that they are His hands. Praying for strength and the where-with-all to process all the info that's going to be thrown at you so that you can care for your lovely girl. She's a miracle! Hugs...

  9. What awesome news! Continuing to praise and thank God in every circumstance, and celebrating this news!!!! - annie in toronto