Monday, March 16, 2009

Update







Ethan is doing great. This is his first time in a bouncy seat! Soooo cute!

Here is a semi-technical explanation of Ethans latest events. . .
He had to get a chest tube on Sunday to drain the fluid that was building up in his chest. This is the second chest tube on that side. Only this time it drained out a milky yellow color. . . The lab tested it and it was 100% positive for lymphocytes. In other words he has a major lymph vessel that is carrying lymph fluid to his heart. Due to the repair/strange anatomy of his heart the lymph vessel cannot drain there and has to find a new route. Until it finds that new route into the heart the lymph backs up and is draining to his space around his right lung (pleural space). This is referred to as a chylous effusion. One of the attempts to minimize this build up is a super expensive formula we have to use for six weeks. . .Yea$$$.



For those of you who knew about my preganancy, Ethan had pleural effussions in utero. The doctors #1 theory is that they were chylous effusions. So this might be something that comes and goes for awhile. We are grateful all his little setbacks are just that, setbacks. His heart is doing wonderful. . . He just needs to get past all these little hiccups and then we can bring him home (until the next Surgery anyway).

11 comments:

Ryan and Shannan Hoffman said...

He looks so darling in that little seat. What a sweet little guy. He looks very healthy and has good color. I can't wait for you guys to get to take him home.

The Simmons Family said...

He looks so adroable in his big boy bouncy seat!!

Owen too got Chylo (after his Glenn) and we were on Vivonex for six weeks. So much for feeding therapy during that time... YUCK!
Hopefully since he's tube fed, your insurance will pick up the cost.

It sounds like he's doing well..it's great news that his heart is doing it's job. It's usually all the other stuff that acts up.

We're always praying!

Kim Butt said...

What an adorable picture! Thanks for keeping us updated. I'm sorry to hear about this latest setback though. He seems like he is a very sweet little guy!

Lily's Mama! said...

He looks so comfy in that bouncy seat.
I don't know if I ever have introduced myself but I have been following your blog for a while. I found it from Bela's page. Both her and my daughter were born on the same day at St.Joes. We love the 7th floor and the staff. You could not be at a better place.

He seems to be holding strong and I am so happy. We have been praying for him, and when I see that he is doing good I can't help but be excited.

We will be down at St.Joes on Wednesday, we always stopped by up on the floor after our apts and say hi. If you are there I will make sure to stop by your room and say hi also.

Sending you heart hugs
Jenna-Lilyana's mama

Caryn said...

He's so cute in his bouncy! Braden got so used to being naked at the hospitals that I had a hard time ever getting him dressed!

Ethan sure is a cutie!

Andrea Gunnell said...

Yesterday at church Sister Weber told me that she is your husband's aunt. That's very cool!
Ethan is looking so cute! I love those big eyes!
I'm so happy to hear his heart is doing well but I'm sorry he's had a few setbacks.
I'll continue to pray that you will be able to take that sweet boy home with you soon.

Sara said...

He looks so much bigger and older and stronger. What a strong little heart he has!

ZippityDoDaw said...

He looks great in the bouncy seat, love how he peers over the monkey at the camera. He looks very attentive. Sorry about the chest tube again, at least they understand why he is getting the pleural effusions.

We'll pray that the new formula does the trick, and insurance pulls kicks in for it.

I just want to squeeze his little feet!

Hugs, Wendy

Meredith said...

poor guy. His scar looks great, I thought it would be worse than that.
Thanks for all the updates :)

Meredith said...

poor guy. His scar looks great, I thought it would be worse than that.
Thanks for all the updates :)

Natalie Hall said...

Yes!!! What a cutie... His eyes look so alert and alive. This is the path we are all praying for.

Oh lady, you and Greg are so strong.. I am in awe with what your dealing with. I have been in intensive care with
my other twin Noah, ( he had a dang accident in El Centrol California, quad riding, crashed! And Flew about 30 feet, punctured lung and broken ribs.. So they flew him plane to SanDiegos Rady hospital.. We are so extremely blessed AGAIN!!!!!and I just can't grasp your situation day in day out.. So I check your blog compulsively, as we sit here everyday... Wow!! is all I can keep saying, and hang in there....

Sorry, such a long annoying post.. The Iphone does help pass the time....