Wednesday, April 28, 2010

A little bit of this and a little bit of that...

Today was a BIG day. And I am sorry for another long and boring post. I typically try to keep the writing short and the pictures flowing, but lately have done a lot more writing...keep reading though. ;)
Today was Brayden's annual EKG and heart echo with Dr. Cowley at Primary Childrens Medical Center. Brayden was born with aortic stenosis and a bicuspid valve instead of a tricuspid valve. This is NOT from prematurity, it is actually genetic and thank heavens the other boys don't have it. Soooo, what does all this mean?
The bicuspid valve does not affect Brayden negatively at all. We don't consider it an issue, and all is well in that area. The aortic valve in the heart is the main artery that blood flows through from the body to the heart. Aortic stenosis is when that artery is pinched. It is too narrow and the blood flow is not what it should be. Right now, it does not affect Brayden negatively. They have special ways through EKG's and heart echos to tell what the blood flow is, how strong his valve leaks (I guess I forgot to mention his valve also leaks) and to make sure the heart is currently operating correctly...or at least correctly for him. When he was just barely out of the NICU we drove twice from Boise to Salt Lake believing he was getting a balloon procedure done to widen the narrowing. Both times, the reading stated one thing, but when the doctor (this same Dr. Cowley) got inside to actually do the procedure, it was totally within a normal range of flow and the procedure did not need to be done.
A big WHEW for us, especially because the first time Brayden was around 10 pounds I think...Can you imagine having a baby that small needing surgery??? On his heart..... VERY SCARY. Since then, his readings have been great and there has been no talk of ballooning the valve or anything until YEARS from now.
Today...well, I learned that although things arent terribly different from last years visit, the changes are enough that ballooning the valve is no longer an option. There is a leak (its always been there) in the same place where they need to increase the blood flow. Soooo, they balloon it and the leak will just get worse. The small change from last year to this year in leakage is just enough that they would no longer do the balloon procedure. I don't know why I was so disappointed by this, but I was. I mean, he is fine for now. And probably for at least several more years. But the balloon procedure would have bought us more time and many more years (we had hoped) before he would need a more major surgery. But surgery is in our future- Not now and hopefully not for at least a few more years...they will first try to stop the leak. If that is unsucessful, they will replace the valve. Which doesn't grow with him. So if he has it done when he is still growing (not an adult, in other words), than he will have to have it done again...and again with growth. This made me so sad. We had been told from the very beginning that valve replacement was probably in Brayden's future...but I had always thought the ballooning would come first, and like I had said, buy us more time. I shouldn't have been so surprised or upset by the news, but I was. I didn't burst into tears or anything, I just kept saying "Wow," to the doctor and explained my concern for him leading a normal life.
Which brings me to the next saddness...he made the comment that Brayden seemed really active and I said, "Yes, basically a monkey 24-7" and told him I am glad I don't have to keep him playing it cool right now because I can't get him to NOT be active. He said that was great for now but in high school he probably wouldn't want him going out for football or lifting weights...I think I already knew this in the back of my mind...I had always been asking if he could lead a normal life, but never had been told this part of it. So I was definetly sad to have that confirmed to me.
Cortney cheered me up a little. He did not seem surprised with what Dr. Cowley said, which lead me again to believe that maybe some of this I deep down knew but it wasn't actually brought to the surface yet. I have put many hours of prayer into Brayden's life and know that everything will work out how it is supposed to. I know that Heaven;y Father is watching over and protecting our family. I KNOW IT. We have had too many miracles so far to deny that.
So I am putting my trust and faith in Lord to get me through all of this. I know, for right now, Brayden is fine. He can lead the best life, right now. So I am not going to let my mind fill will worry about the things I have no control over and can't change. I am going to focus on making his childhood the best it can possibly be and letting the Lord take care of the rest.

This is Brayden in the middle of the night asleep on the bathroom floor. I think he came in here to go potty and just couldn't make it back...he even left the light on. So silly. That boy drives me NUTS half the time, but what would life be like without him in it?! I am so grateful to Doctors and the time they take to go to school and educate themselves to help my children. Nurses, secretaries, all that work and/for/with doctors to help my children.
So there you have it.
OH! P.S. Did I tell you Keaton is still 18 pounds and the average size of a 7 month old? YUP, but on a brighter note with that, he IS getting taller and is now 10% on the charts for that is's funny the looks I get from people when he does something that someone his age (20 months) would do, but not what let's say a 12 month old would do (which is typically the age people guess he is). It's awesome. One of these times I should say "Actually yes, he is a year old and a baby genius." HA HA!


Angela Frasure said...

Hey Liz, I am so sorry. I just assumed it was a routine appt and didn't even ask if you'd learned anything new. I don't blame you for taking the news kind of hard- I would have too. It'll all work out for the best. Sorry again.

Debra said...

For some reason this reminded me of someone in our ward. We had a lesson on Sunday about the November conference talk about having a change of heart. And a mother in our ward got up and talked about her son's heart transplant he had when he was 15. Prior to that, he wasn't able to be overly active, and the doctors said he could only ride his bike on flat ground (which is basically impossible here in Washington). But he is now on a mission and able to ride a bike and be more active with his new heart. There definitely are lots of miracles around, and if we have the faith, we recognize when God performs them in our lives.

the tim gailey home said...

it's just wrong that anyone that cute and precious have to endure anything unpleasant. so sorry and i hope brayden developes strong faith like yours. you really are amazing.

Baker Family said...

You are such a great mom Elizabeth. I am so glad they know what's up with him. You have such a great attitude :)

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