Friday, May 11, 2012

"it will get better"

It's been a long time and we've been so busy. If you've been following our fb page "Rykers Heart" then you will know mostly everything that has gone on. Long story short..

We were at a physio appt where we learned Ryker will need skull surgery because his skull prematurely fused.. While waiting to speak to a neurosurgeon, Ryker had laboured breathing and they had to call code blue. it was not an actual code but they were scared. They wanted to keep us overnight just to watch him. They did an echo and found out he has pulmonary hypertension.... yay. more problems.

In the next few days it was decided to do a cath to figure out the reason why there was hypertension. While in the cath lab they found the issue was a narrowing of the pulmonary artery so they put a stint in and it has seemed to fix everything!

It's been a month since the cath and Ryker has been amazing! We don't see cardiology until August which is incredible considering we've been going every 2 weeks!

Ryker is reaching all his milestones appropriately. He is getting two teeth, has started rolling to his side, has amazing head control and is discovering his feet! Yay Ryker!

I noticed in a previous post I wrote how Ryker has a fixable heart defect. I feel I need to elaborate on this. CHD is not fixable or curable. To have a fixable heart defect it means one that can be manipulated through surgery to work properly, rather than get a heart transplant. In Ryker's case.. one of his defects - Pulmonary Stenosis - can never truly be "fixed". It requires tubes in the heart to "buy" time until he grows out of the tube, in which case it will need to be replaced. That is a lifetime issue for Ryker. CHD is a lifelong disease.

I remember 4 months ago people always said "it will get better". I would sit there, screaming in my head at them saying "how will THIS EVER GET BETTER". How could they possibly watch me sit bedside of my sons little newborn hospital bed and tell me it will get better.

Now I look back and think.. "wow, they were right". It did get better. I feel bad for being so angry with people who were just trying to console me. For once in Ryker's short life I don't live in constant fear that I will lose him. I've learnt that there are some things out of our control. All I can do is put my faith in God's hands, and enjoy every minute we have with him. Ryker is a miracle. Our miracle. I would not change this life for anything.

3 comments:

  1. I used to think of Izzie's defects as "fixable" because they can patch her holes and her heart will function normally. But then as part of discharge instructions, they tell me that because of her CHD, she is at much higher risk of problems down the road. Because of her repair to "fix" her heart, she is at even higher risk of more and different problems down the road due to the surgery itself. The stenosis is her right pulmonary artery didnt need any interference during the surgery and her surgeon thinks it will never need anything but he was quick to point out that it could still happen, she is at risk, and we will have to watch it. She is "fixed" but we will spend the rest of her life doing regular echoes to ensure she stays that way and hope that the complications she is at risk for later down the road do not rear their heads. Eh, enough babbling from me :p

    I hope Ryker has many many years of health and good heart function from his stent :)

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    Replies
    1. Yep. It's sad our children will forever have broken hearts. But to me, his heart is perfect.

      His cardiologist said the stent will most likely come out when they replace the conduit from his Nikaidoh in a few years. In which case instead of putting a new stent in they will make the artery wider by putting in a patch. Ryker will need surgery as he grows out of his conduit. Which as a child will be more frequent than adulthood. I continue to pray that when Ryker's an adult they will have some kind of cure for CHD. Wishful thinking.. I know.

      I hope you're lovely Lizzie strata clear of all future problems and is able to live a normal, healthy life.

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    2. Yep. It's sad our children will forever have broken hearts. But to me, his heart is perfect.

      His cardiologist said the stent will most likely come out when they replace the conduit from his Nikaidoh in a few years. In which case instead of putting a new stent in they will make the artery wider by putting in a patch. Ryker will need surgery as he grows out of his conduit. Which as a child will be more frequent than adulthood. I continue to pray that when Ryker's an adult they will have some kind of cure for CHD. Wishful thinking.. I know.

      I hope you're lovely Lizzie strata clear of all future problems and is able to live a normal, healthy life.

      Delete