As we sit in the airport, waiting for our flight to Edmonton, I want to start with a verse that a friend shared with me this morning. There have been so many prayers and love sent to us and we are so thankful!!! But this is a verse that will become my anthem for our journey now.
Isaiah 43:18-19:
FORGET the former things;
do not dwell on the past.
See I am doing a new thing!
Now it springs up,
do you not perceive it?
I am making a way in the desert and
streams in the wasteland.
This is truth. Our story that continues now, will not be defined by past experiences. God is doing a new thing in our life and He is faithful and has already been showing us.
1. There is more consensus with the proposed treatment plan. The team discussed Nate on Tuesday, and most agree that valve replacement is the best scenario.
2. Nate is excited to go to Edmonton (for now, lol!!). When we told the boys about going, the only response and thoughts from Nate were: "Woo hoo!! I get to go on a jet!". Brady had some tears, but only because again, he would be missing out on the jet ride.
3. I prayed that we would feel peace and be confirmed in many ways that this is the right thing to be doing. On two occasions, people have said that in their prayers, they felt God assuring them that things were going to be OK!
That's a pretty good start!! I'm not saying this is easy or I'm not anxious (still working on that), but I have the reassurance that God is with us.....He's doing this.
And just like that, life shifts into a completely different gear.
As I was making supper, the phone rang. And to my surprise it was the surgical co-ordinator from the heart clinic. I was not expecting this phone call, so it hit me pretty hard.
Nate's heart surgery has been scheduled and we leave for Edmonton next week Thursday.
Wow. We were thinking June....maybe. This just came out of the blue. Every single bit of me wants anything BUT surgery for my little Nate. I remember walking through The Stollery when we were there in January for Nate's MRI, and thinking 'I do not want to come back here. I will not come back here. I can not bring Nate back here for surgery'. Good attitude, hey?
But now we're going through the motions. Thinking about making arrangements for Brady while we're gone, getting the time off from both our jobs - and thankful for such understanding employers, thinking about what to pack - all of the necessities for keeping our 'strong-willed but still so apprehensive and attached' Nate happy, occupied, and distracted with toys and surprises....which will hopefully bring him some enjoyment and serve as a bit of a consolation for everything he will have to endure.
But the kicker is this: The boy who has been asking when is birthday will come for about 4 months already, and who in the last week has started a numbered countdown to April 30th, will most likely spend his 5th birthday in the hospital. That makes me sad. And that's after the sadness that I feel about what he'll endure in general.
The surgery that they plan is not finalized as yet. Options are the Double Switch or valve replacement, and biventricular pacemaker. We plan to discuss the options next Thursday with our cardiologist in Winnipeg, and then on Friday at our PreAdmission Clinic at The Stollery in Edmonton, when we will also meet with our surgeon, Dr. Rebeyka.
I am telling myself that it will not and can not be as bad as the last time. If you remember back 3 years ago....it was pretty bad. In some ways, I feel better prepared this time around. In other ways, because I know a lot more of what is coming up, it makes it harder.
Since this news is rather new to us, emotions are rather raw. I'm sure that in the coming days we will feel more prepared emotionally and mentally. We need wisdom in knowing when and how to tell Nate about what is coming up. And how much information to give him.
Even though emotions get in the way sometimes, I am assured of God's plan, His love and His care over Nate and all of us. He gives us so many promises through the Bible - words that can soothe and encourage even the most hurting hearts. And I know there are so many people who are supporting us through their love and prayers. Those prayers are essential and we can't thank you all enough for them. We know He can do great things, and we pray for great healing for Nate. We know God can do the impossible. Thank you for joining us in prayer. Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him beglory in the church by Christ Jesus to all generations, forever and ever. Amen. Ephesians 3:20-21
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".
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.
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!
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 family....as 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 injuries.....it 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, sniff.....going.....hiccup.....to.....sniff......die?" 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!!
