Thursday, May 03, 2007

Cath. Results

I'm going to try to explain Monday's cath. results in the best way I know how - I'm still a little unsure myself and have a meeting with Evan's cardio today to get a better understanding. Evan was a real trooper even though he realized the minute we pulled into the parking garage where we were and was a very brave little boy the whole day. Once sedated the cardio came out and told us that today could be just exploratory, that even though the Vent. Perfusion Scan showed that the pressures were off between the left and right lung that they wouldn't know until they got in there what was really going on. They came out about 2 hours later and called us in the discussion room - aka the room that makes me feel like I could run screaming - and said that there were no benefits to doing another stent right now - that the pressures were really the same as they were post-stent last April and that the right pulmonary artery was narrowed now as well but that was actually helping push blood flow through the very narrowed left pulmonary artery. Then the blow - Evan will require another open heart surgery to place a conduit. I was totally stunned and have lived in a nice little world of cath. procedures only since he was 9 months old. I said I understood what he was saying but really I'm not sure - I believe that his valve is leaking more and both right and left pulmonary arteries are narrowed which makes the conduit necessary to replace them and the valve. His cardio did say that Evan is in excellent shape right now and they hope to put this off for as long as they can - even mentioning 10 yrs. If they could wait this long it is possible that only 1 surgery would be needed and they could place an adult size conduit and valve in - all in Evan's timing I suppose. They did start him back on Digoxin. He urged me to treat Evan as a normal child. We will continue our appt.'s with the cardio and then once a year do a Vent. Perfusion Scan and a cath. to see how things are going. Evan woke up from the cath. in recovery and the nurses came out and said he woke up and said, "My name is Evan, I'm 3 and I want my Mommy and Daddy" and continued to try to get up and walk out. They said they had to keep the popsicles coming to keep him still. He's not said a word about it since we left the hospital and is already back to his normal self. Me - I'm struggling with the thought of having to go through this again but am wondering if I'm ever going to learn the lesson of "Cast all your cares upon him, lay all of your burdens down at his feet and anytime I don't know what to do, cast all my cares upon him."

4 comments:

Terri@SteelMagnolia said...

Hum... I can't remember now...
don't our boys have the same defect??? Is there a place on the blog I can go read about his defect?

We were told during Matthew's last surgery that "he would not grow out of this new valve for at least 10 yrs" .. it was a 16mm valve...

but Dr. Hanley said that he could not tell us how long it would last... due to leaking or calcification.... I hated hearing that... He said it could be every year.. every two years... every 8 ... it all depends on the kid ...
so.... let me know about Evan..
I'm curious to know!

I was told Bovine was very durable... that's what we had wanted last year, but it was too big and wouldn't fit.

Maybe next surgery we'll go Bovine...

I am so sorry about the shock... I know how you feel...
we felt that same way last year ... we were completely blindsided.... I don't think you can ever really prepare....

Krystal said...

Sarah, I am sure that this has hit you like a ton of bricks. We all hope that our kids valves (or lack thereof in Bray's case) will hold out for a long, long time, and it must be so hard to hear that Evan may have to have another surgery so soon. I am hoping and praying that the 10 year comment means that it won't be anytime soon. Evan is such an amazing guy! I swear I think he handles stress better than me!

Anonymous said...

Sarah, I am so sorry that you were hit with this kind of news - I too am hoping and praying that they can put it off as long as possible. If he can go another ten years, just think of all the research that can happen by then. You guys are amazing. Sending hugs and prayers.

SUGGS FAMILY said...

Hey Sarah - checking in on you guys. Sorry to hear about the future surgery. I hope it is 10 yrs rather than any time soon! Miles' conduit is bovine and is supposed to last 5 yrs, then it will need replacing. We have about 2 yrs left.

Sorry you even have to do yearly caths - that is a bummer!

The flyer for your fundraiser looks great! Good luck! I hope you raise lots of $$ for CHD research!

Becky