Monday, June 2, 2008

Excellent heart report from Dr. G


More kissy lips while waiting for the doctor

Elijah's cardiology appointment went great today! He was very well behaved during the echo (these take quite a while to do, so I was hoping he would handle it well) until the very end when the tech accidentally scratched his chin with the wand and made him upset. Other than that, he was very comfortable and happy. The echo results showed that his new valve is working perfectly and the ventricular pressures in his heart are perfect as well. After a VSD (hole) has been surgically closed, it is not uncommon for pressures in one of the ventricles to be too high because of the new way the heart is pumping blood. That's not a concern for him right now and everything appears to be working as good as can be expected. On top of that good report, he has no feeding issues, no breathing issues, no sleeping issues, no color issues and no need for medicine. Elijah is a superstar, as Dr. G calls him.



We will bring Elijah back in to see Dr. G in 3-4 months, and he will need another heart cath sometime around October to see if his crazy MAPCAs collaterals are behaving. Since he has Tetralogy of Fallot with Pulmonary Atresia (as opposed to Pulmonary Stenosis), things are always going to be a little bit more complicated because his arteries just aren't "normal." Pulmonary Atresia means that his pulmonary valve was totally absent at birth (Pulmonary Stenosis means that the valve is just narrowed). With no valve to deliver blood, his body created a bunch of new pathways so blood could get where it needed to be. These pathways (called collaterals/MAPCAs) act as arteries, but they are not true arteries, so they can be twisty and narrowed and they are typically much more complicated and fragile than normal arteries. Sometimes they are duplicated and a couple different collaterals can be sending blood to the same place, which isn't good. During a heart cath(eterization) Dr. G can see all of those collaterals and figure out what parts of the body are receiving too much, or not enough, blood from them. He can do most collateral management in the cath lab, which is good because that is all done through a catheter inserted into a vein in the groin. Sorry if I bored you, but that was a long way of saying that Elijah will most likely need many heart caths in his young life. This next one will be #5. When he is 18 months old he'll have had two open heart surgeries and five heart caths, amongst a few other little surgeries unrelated to his heart.


See? He makes this face constantly! I love it.

I asked Dr. G to give us an estimated guess about when the next open heart surgery will need to happen. He said that on average, TOF babies need valve replacements 4-5 years after their final repairs (some kids need them after 1, some after 9), but since the Pulmonary Atresia/MAPCAs complicates things, his best guess for Elijah would be 2-3 years from now. Dr. G is ALWAYS very conservative in his guesses, so I'm hoping this means we'll have at least three years before we have to do another OHS. Really, all we can do is wait and see and just enjoy every day we have with this awesome little boy.


Finally! A picture with Dr. Gremmels. If only I would have noticed that Elijah's eyes were half open. Oh well, at least he's smiling!


The paper on the exam tables is the most fascinating thing in the world

16 comments:

Samantha said...

YAY, YAY, YAY!!!! What wonderful news! What a wonderful little boy you have! I do love that face very much!

One more time...YAY!!!!!!!!!!!!!

Love ya!
Samantha

THE LYONS FAMILY! said...

Yay Elijah! I've been checking the site all night for an update!! Such wonderful news!

mina said...

Excellent update! Elijah really is a little miracle. I love his photos, he's getting to be so expressive. And it's still good to see some of his curls (I voted for keeping them)! Hoping that the next several pre-cath months are worry free and continue to be medication free.

TimnKatienElinSam said...

YAY Elijah!!! This latest post just made my night. I LOVE the haircut, by the way. SO CUTE!! He is a superstar. Things are just going to keep getting better. You both just have such an amazing attitude. We need to see you guys soon. We need to plan a little playdate for the boys.

xxoo-the Yoders

TimnKatienElinSam said...

YAY Elijah!!! This latest post just made my night. I LOVE the haircut, by the way. SO CUTE!! He is a superstar. Things are just going to keep getting better. You both just have such an amazing attitude. We need to see you guys soon. We need to plan a little playdate for the boys.

xxoo-the Yoders

jencooper said...

Wahoo Elijah! You are such a superstar! I am so proud to hear that you had a great report.

You are such a handsome guy. I love the haircut and the fat rolls!! I want to munch them!

<3,
Jen

Krista said...

Love the kissy face...SO CUTE! We never had to take toys to doctor's offices...cause Kate loved the paper too! What is it about the paper?

I'm so glad you had such a great report...Elijah is a superstar!

BTW...TAG, You're IT! (check my blog)

Anonymous said...

Hi all!
Yikes! E. looks so grown up with his hair cut, and could the pursed lips be any cuter?? His eyes look more and more like his mama...darling!
Glad you got good jumps in last weekend, we hope to see you all VERY soon!
Love,
Ann Marie

Anonymous said...

Hi all!
Yikes! E. looks so grown up with his hair cut, and could the pursed lips be any cuter?? His eyes look more and more like his mama...darling!
Glad you got good jumps in last weekend, we hope to see you all VERY soon!
Love,
Ann Marie

Anonymous said...

I will echo all the other commenters and say, what great news! We are so happy to hear the good report. It warms our hearts. Elijah is so cute and I LOVE the new haircut. (I'll subject myself to criticism and admit that I voted to cut it. Sorry!...) It looks so handsome and grown-up.

You have a special, wonderful little man there.

Amy, Mitch & Wilson

Tina:0) said...

I'm with Krista, what is it about the paper? Vaeh loves any kind of paper, especially napkins!

That face is just too cute! And that new hair cut (with some curl - yea!) makes him look like such a little man!

So glad that the appointment went well. Med free?!? I can't wait until that day, although I'm not sure we'll ever get there, but there's always hope!

Hope his conduit/ valve lasts as long as it can! Vaeh's surgeon told us to expect anywhere from 3 to 10 years! But like Elijah, I'm sure she'll have many caths. We know to plan for one in the next 6 months - angioplasty of those nasty collateral junctions with her conduit! Oh how we learn the jargin! How big is his conduit? Vaeh's is now 16 mm.

Hoping your week is fun! Give those cheeks a gentle squeeze for me!

Wendy said...

Hi Megan!

I'm so glad to hear that Elijah's little heart is doing so well. He's one amazing little man!!! Hopefully, with that bovine valve his next OHS will be many years down the road. The time passes quickly enough....try not to worry too much about it. We're hoping to get at least 5 years out of Emma's pig valve....even longer would be great!

I love his new kissy face! That's Emma's favorite face, too! :) And his haircut is just adorable....I'm happy to see his curls are still there!!!

Give that cutie-patootie a big heart hug from us!

Lots of Love & Prayers,

Wendy (& Emma, too!)
www.caringbridge.org/visit/emmanicole

Unknown said...

Excellent report! And you sound like a true doctor describing Elijah's heart condition. Actually I have never really understood it that great, since Arianna has pulmonary stenosis, but after reading your post I completely understand. You are such a wonderful mommy!

Unknown said...

Excellent report! And you sound like a true doctor describing Elijah's heart condition. Actually I have never really understood it that great, since Arianna has pulmonary stenosis, but after reading your post I completely understand. You are such a wonderful mommy!

Sarah said...

What a wonderful miracle you have!! Our sweet Savannah was born with the same thing and lived six weeks and the time was so precious! I enjoy reading such a wonderful success story!! Good luck and all my prayers! Sarah

Kathy said...

SUPER news!!!
Elijah is the MAN!!!
SO glad he's got nothing going on but cutie pie smiles and lots of love!!!
Now...you can relax and breathe!