Thursday, March 21, 2013

The Next Steps...

So, it's time to give you all a run down of what we've been learning and processing.
There aren't any cute pictures or fancy diagrams here, so I hope this makes a bit of sense to you, and your eyes don't start to glaze over.  I'll try not to get too technical or wordy here.

Just to clarify:
PC stands for Pediatric Cardiologist.  Nate's is Dr. Soni, in Winnipeg.

Dr. Rebeyka is a Pediatric Cardiovascular surgeon.  He is Nate's surgeon in Edmonton.

"The Team" is the group of surgeons, cardiologists and other specialists (from Manitoba and west) who make up the Western Canadian Children's Heart Network.  They conference together to discuss their cases and collaborate treatment options.

Here is a little video that talks about the team and what they do.  Dr. Soni and Dr. Rebeyka are both identified in this little video.

What Don and I have learned from Dr. Soni, is that the team has met 2 times since February to discuss Nate.

Both times they have conferenced, there have been very strong BUT differing opinions on the course of treatment for Nate.

If that doesn't demonstrate how unique and complex Nate's heart is, I'm not sure what will.  The issue the team is having, is that there isn't one good or proven way to deal with Nate's heart.  Every option brings with it risks and future complications/implications and uncertainty how he would respond in any case.

The 'Double Switch' is one surgical option.  It is a very technically complex surgery.  It includes an atrial switch and arterial switch, thus bringing the ventricles back to their 'designed for' job, the left ventricle serving the body, and the right ventricle pushing to the lungs.  A pacemaker would be placed at this time. This surgery only has short term studies, as it's been around for about 20 or so years.  Our PC doesn't feel that Nate's ventricle would tolerate the switch, as it hasn't improved since his PA banding surgery.  She also feels Nate would be a very sick little boy after this surgery, and most likely need to be placed on some type of assist device to give his heart a chance to heal and get stronger after this surgery.

Replacing his leaky Tricuspid Valve is another surgical option.  The premise being, reducing the the leakage will reduce the work load of this ventricle, and hopefully give slow down the rate of heart failure because it wouldn't have to work so hard if the leakage is reduced.  It would not solve the problem of the high pressure flow into the lungs and thus, pulmonary hyper tension becomes an issue.  There are tissue valves and mechanical valves.  A tissue valve does not last as long.  It may have to be replaced in a matter of 5 years or less.  A mechanical valve would last, but Nate would live his life on blood thinners (coumadin/warfarin) to prevent clots from forming, and would mean an immediate change in activity and the constant risk of bleeding.  The mechanical valve would need to be replaced only at a time when he is big enough for an adult sized mechanical valve. A pacemaker would be needed as well.

In both these options, there is no guarantee that his heart won't fail following, regardless of which surgery, which brings the option of heart transplant.  Our PC feels this is a reasonable option, and feels our family would be conscientious and be able to handle the responsibility and maintenance that is required for a transplant recipient.

So now you can understand why there are some 'strong and differing opinions' among the team.  In the end, our surgeon told Dr. Soni that he would do whichever surgery Dr. Soni would prefer.

She feels that the valve replacement is the better of the options.  As of right now, Nate is a level 3 surgical priority as of February, and we have about 3-4 months to wait.  Once we have a surgery date, we will go to Edmonton.  Nate will have one more 3D echo.  The team will meet one more time to discuss and 'duke it out' a last time.  We will then meet with Dr. Rebeyka and discuss with Dr. Soni, our options and make a decision.

Our hearts and minds are full these days.  It's a lot to process and consider.  Even harder when I see Nate doing pretty well on a day to day basis.  Especially when I think about him wanting to play T-ball this spring, looking forward to camping this summer and preparing to start Kindergarten in school this fall.

So, we'd ask for you prayers for our family!  We need wisdom and a clear and confident decision.  We've prayed for and will continue to pray for Nate's complete healing.  We have complete faith that God can and will give Nate a beautifully healed heart.


Rachelle said...

Wow, what a lot to process for you! I will be praying for you all and the doctors in the decisions that need to be made. I join you in prayer and believing in a healed heart for Nate!

Erin Beckemeier said...

Could the team consider a bi-v pacer first to help with training for a few months prior to the DS? Look up Jennifer Jankowy Hyer on FB. She was td the pa band didn't work on Keian and he was not a DS candidate. A second opinion said to try bi ventricular pacemKer and it might help. It did and a few months later he got his DS and has been awesone since.

Dinah Elias said...

Thank you for sharing this Carole!

Praying for you all!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

With love

Heather said...

for you and the medical team.
Prayers for a healed heart!!!