Monday, August 16, 2010

The Heart of the Matter......

Rhett had a cardiology appointment today.

It left me feeling anxious, confused, and a little angry.

His tricuspid valve is shot. His pulmonary pressures are raised again, and in the words of his cardiologist......"If he were to come down with pneumonia or an upper respiratory infection, he will have a major set back."

Well, pneumonia and Rhett are like best friends. He gets anything and it turns into pneumonia.

So I asked him what we do. As far as his pressures go. We're screwed. We can't up his meds because when they do he has major episodes of bradycardia. (Slow Heart Rate) And when I say slow, I mean slow. Like he totally sits at 45 bpm. For a typical child his age they would call a code at 55 bpm.

There is the chance of trying a different med, but right now, he wants to keep him where he's at and be a little more aggressive with the good ol O2.

Now the valve......that's tricky. They want to wait till he shows a few more symptoms. Like right now, he seems to have enough energy sitting around at home. When he starts school, it might change. His cardio didn't even discuss when to come in next. We were just told that he would probably see us in the fall or winter.

Basically what he says, is until he goes in to heart failure then we just wait. EVEN THOUGH the valve is beyond the whole severe leakage point. Over the last 4 years, I have watched it go down hill with every echo. First it was mild. Then we went to moderate. Then it was severe. Now it's shot.

I'm so not comfortable with this.

So for now we just sit and wait and see what Rhett's body decides to do.

We have had a really good summer. We've done a lot of fun stuff, but I'm ready for the kids to go back.

Dakota will be a sophomore this year, and we are going the self contained classroom route. He's not thrilled, but being mainstream in grade school vs high school is two totally different things. I'm hoping for the best, but preparing for a struggle.

Hunter will be going to Jr High. He'll be in 7th grade. He's super excited, and honestly I'm not worried about him. He makes friends like crazy, and is an easy kid to get along with. He's helped with Rhett alot this summer, and he is currently starting his first year of Tackle Football. He is loving it, and has been practicing hard for the last month. His first game is at the end of this month.

There will totally be pictures.

Chloee is going into the 3rd grade, though she acts like she's going to high school. She's way too smart for her own good. She is reading on a 8th grade level, and working hard. Her favorite books right now are Little House on the Prairie. We were in Target the other day looking for school clothes, and she found a shirt with a baby chick on it wearing glasses, that said "Nerdy Chicks Rule." She fell in love and we had to get it. She's not a nerd, but we just love her to pieces.

Rhett is still going to pre school. I am looking forward to that whole 4 hr break thing. He didn't get any summer school this year and he's been a handful. Adorable, but a handful.

Andy is starting school at UVU on the 25th. He is excited, and is going to be a teacher.

I'm currently working part time from home, and loving it. Although when school starts I will be looking for part time outside of the home. Momma needs a break!!! I had planned on going back to Hollywood Video, but they have since closed all of their stores and gone out of business.

I hope all of our little friends are all doing well. If you have a minute, and could visit sweet Ashley Kate, she needs our prayers. She is a beautiful little girl that has been fighting rejection and recently had to explant her intestines. She is the example of strength if I have ever seen one!

1 comment:

Jake & Stephanie Ellinger said...

I'm sorry to hear about Rhett's heart. That has got to be so frustrating for you! How is his eating/gtube feedings going?

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