Friday, March 22, 2013

So Blessed...

Today was a good day!! I just feel blessed by each of you, who pray for Nate and support us as a family!! I'm so thankful! Nate was in an unusually good and compliant mood today.

So with a good day behind us, and a quick soak in the hot tub on this beautiful winter-like spring night, I find myself praising God for his goodness and for the blessings of this day.

Here's a song that sums a lot up....."what ever may pass and whatever lies before me...let me be singing when the evening comes".


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.

Tuesday, March 5, 2013

Mind the Gap

Once upon a time, not too long ago, there was a boy with 20 beautiful, perfect and meticulously cared for teeth.....

Then, as the days grew cold, and the snow created an outdoor arena of fun, GT racing became one of the boy's favorite things to do.

So, while their mother was at work, the little boys and their dad went out again, to conquer the hill.

And conquer they did.....even leaving the battle grounds a little (or a lot) bloodier than they found it!

Nate the Great now sports this lovely smile with pride!

And they all lived happily ever after.  With 16 meticulously cared for teeth.

We're at one week post-incident and this guy is doing pretty good and back to mostly normal eating.  Although, biting most food is a bit trickier for him now!

Reminds me of the Seinfeld episode....

But we're thankful that there was nothing worse that happened!  Thankful for the angels protecting him!!

P.S. We'll have a better idea of Nate's surgeon's plan next week Wednesday...will keep you posted!

I can't remember the last time I've used a P.S.  ha ha!

Sunday, March 3, 2013

Results Day?

We were notified this last week that Nate has an appointment with his cardiologist at HSC tomorrow.  I'm assuming that this means the team has met and discussed results, following our tests in Edmonton.
We're leaving tomorrow morning as soon is Brady is off to school, and praying that the foot of snow that they are predicting will not affect the roads.  We always give ourselves 2 hours to get to our appointments, and it's usually right around that time.  Hopefully the snow will not slow us down to get there for 10:30.

In other news, nothing has been close to boring in our per usual.

This time, it was an unfortunate accident involving Nate, and the ski of Brady's GT racer, at the bottom of a snow hill.  The result was Nate losing 4 lower teeth (teeth 71, 81, 82 and 83 for my dental friends :).  Thankful that he didn't have any further could have been much, much worse.  Everyone seems to be on the mend.  Although Nate can't bite into things, he has been eating pretty well, (something that was an immediate concern for me).  Brady has also recovered from the fear, guilt and sadness.  He felt incredibly guilty and was scared seeing all of the blood (it was bad).  Don had to calm him down on the drive, even more than Nate.  He kept saying 'he's losing a lot of blood' and even asked if Nate was going to die.  I was conveniently at work, just down the hall from my friends at the dental office, so I rerouted Don from going to the ER, and just told him to come straight to the office.  Nate was very brave through it, although it did get a little loud in the room (sorry to the people in the waiting room :).
At one point, between sniffles, Nate even asked:  "Am....I....sniff," Oh, the poor guy!!

And in totally unrelated news, we're getting our house put back together again.  Glad to have carpet downstairs, and furniture to actually sit on down there and up in the living room.  Will post pics once I take a moment to take some!

Finally something soft to walk on! 

Just need to put the pieces together!

Well, that's it for now.  Thanks for your care and love in the last week and for the prayers as we head into our appointment tomorrow.  Praying with expectation!!