Thursday, 17 January 2013

Another Question??

I am sure to have sprouted some grey hair today.  The stress of your child being in the OR is really difficult.  I arrived this morning at 6:30 and found Hope asleep.  She had slept through the night and been completely settled.  Hope woke up moments after I walked in and screamed out, until she saw I was already there.  We had a good morning snuggle while the doctor and nurses called around to see if Hope's heart cath was still a go.  There was no PICU back up bed available and the anesthetist was hesitant to take Hope as a result.  I was really nervous that the procedure was going to be cancelled, but we ended up getting the go ahead.  I walked Hope downstairs and had to hand her over to the anesthetist.

The 4 hour wait was horrible.  I was told it would be about 3 hours, the final hour was the most difficult.  When the pager went off I nearly jumped out of my skin and walked as quickly as I could to find my little girl.  The doctors were all around her recovery bed, and I noticed that she was moving and clearly alive.  I also saw that she was no longer intubated, but was told I could not go near her yet.  The resident gave me no information and lead me to a small, cold room to wait for the doctor.  That wait is also terrible and never goes quickly.  I was worried that something terrible had happened, everyone was very professional and uninformative.

Eventually a nurse came to say that the doctor was delayed and I could now sit with Hope.  It felt so good to have her back in my arms and to see that she was truly stable.  When the doctor came he took me into another room to show me videos of the procedure.  To be honest, if someone had shown me videos of a colonoscopy, I wouldn't have known the difference.  I just nodded and pretended to see the non-exist vessels he pointed to.  

It's very confusing, but I'll do my best to explain the results.  During the cath they measure the vascular pressures through the lungs and heart.  The left and right pulmonary pressures were different.  One was 14 and the other was 17.  They weren't thrilled by this, but also not too concerned.  They saw very minor narrowing, nothing that needed to be repaired and were decently happy.  The confusing part was the aortic arch.  In the ascending aortic arch they found high pressures, but expected this because of the Glenn.  The descending aorta pressures were closer to the normal, yet still high range.  The problem is that the ascending and descending pressures were different by a gradient of 30!!  It should never be that different.  

The only way to explain a difference at that degree is an obstruction, narrowing or back pressure.  The doctors are not able to find any obstructions, no obvious narrowing and are not able to explain where the back pressure would be coming from.  So basically, they know there is a problem, but not where it comes from.  As a result, they can't fix it, as they don't know where to look or how to repair it.  The doctor, a man in his 60's, told me he had NEVER seen this before.  I'm so sick of hearing that statement from wonderfully experienced doctors.

The problem now is deciding what to do next.  Our cardiologist in Calgary wants to do a CT Scan.  The Edmonton team has yet to weigh in on whether or not this will happen.  We are hoping to be transferred back to Calgary tomorrow, but will have to wait to find out if the CT Scan is going to delay us.  This is a very busy season for both hospitals.  We need everyone to pray that a bed becomes available in Calgary for us, as a lack of bed could keep us in Edmonton.

We praise God for our little girl and the fact that she pulled through today.  We are asking for God to give the doctors incredible wisdom as we move forward.  We are clearly frustrated by the lack of answers, yet thankful for Hope's life.  I'm not sure how we're ever going to get this girl home if we're not sure what's wrong!


  1. YaY baby Hope :) xo

  2. So crazy....what is God doing? I daily ask Him, that He does something so miraculous that there is NO possible way it can be explained as anything other than being of Him. Often i explain all of Hope's unique situations as God just setting the scene for His biggest miracle for Hope yet, to blow everyone away by His love for her...doctors, nurses, transport teams, patients and parents in the beds and rooms next to her, strangers that overhear Hopes story at starbucks, people everywhere!! Praying for you all, amy.

  3. Still sending positivity from Ontario to a child and her family who know no limits to the power of prayer and HOPE.

  4. My son also has HLHS. He's now almost 2 years old and has had 3 open heart surgeries and 1 disastrous balloon dilation of his pulmonary artery. My mom and I have been following Hope's journey and I am amazed by the strength you, your family, and Hope have. Everyday I wish for a miracle for her.

  5. I 'm grateful with you for Hope's strength thru the cath. As you all consider these questions, i am praying for healing first and also for great revelation and wisdom for everyone to resolve these mysteries so that Sweet Hope can go home with you guys and you can all just BE together with some semblance of normalcy. I know God is using all of this for good... and that He knows what we can bear... I pray tho that He'd lead you right through this season and into a new one, and that it would come sooner than you think.
    these are the 2 verses that come to mind as i pray for u all tonight...

    isaiah 40:11 "He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."

    ephesians 3:20-21 "God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us."

    with you in prayer, mama.

  6. Praying for all of you!!!!