Sammy's surgery is scheduled!

[delvalle6]

UCLA---> here we come! Sammy will be having the autologous pericardial leaflet extension on September 7, 2010 at the Ronald Reagan UCLA building in Los Angeles. The surgery will be performed by Dr. Hillel Laks.
On August 13th we had our consultation and found out that the enlargement of the ventricle and the insufficiency is at a point that with exercise Sammy could develope a life threatening arrhythmia. The echo machine they used at UCLA was so much clearer than what they use up here it was amazing. I think that if they had the state of the art machines up here he would have had his surgery long before this point. We are just waiting to make sure there are no hitches with the insurance and that all goes well. In the process of making arrangements for my mom to come stay with the other kids, school arrangements, work arrangments, and all that. I've been cleaning like mad and trying to make a nice comfortable place in the home for his recovery where the other kids won't jump on him or make him twist.
How is it that when you want something (like to have your son fixed) and then it is that time that you are scared to death of the thing you've wanted for so long? I hate mixed emotions--- they are confusing. Sammy is showing no fear-- says he is excited to have the surgery so he can run faster and get presents...LOL... kids, right!? *sigh* wish it was that easy emotionally for the parents....

 

[delvalle6]

Forgot something! The hope is that this surgery will last him until the "stent" that contains an aortic valve is approved for pediatrics... apparently they've been working on it for a while, are just starting to use it on adults, and are hoping to use in in kids in five or more years.... The stent placement is valve replacement that is NOT open heart! I was really excited to hear about it!

 

[Lily]

You have both my full empathy as a mom and my best wishes to you and Sammy as a patient

 

[Johan]

Thinking of you both!! Especially you as the parents. It must be so much harder than we go through it ourselves.

 

[nngbwh]

You both will be in my prayers. Thanks for the update and keep us posted.

 

[Cherie']

Will be praying for you both. It was scary enough going through it myself - can't imagine having my child go through it.

 

[Robb Wilder]

You will both be in my prayers. I remember after the surgery seeing my son and saying I would do this 5 times over just so he never had too. Keep us informed.

 

[catwoman]

Samantha:

I will keep Sammy and everyone in my prayers.

I kinda understand about the presents. My first-ever surgery was at age 17, to repair genetic underbite. I was in the hospital about 5-7 days, surgery was done between Christmas and New Year's. Getting tons of get-well gifts was soooooo cool -- much cooler than my jaws being wired together for 6 weeks.

 

[Naomi]

I hope all goes well with Sammy's surgery! I'll be thinking positive thoughts for you and your family!

 

[Duffey]

I know it's an exciting, but also scary, time in your lives. A big adventure is about to unfold, and I'm confident that Sammy will emerge stronger and healthier than ever. I'll be watching this thread for updates.

 

[barbwil]

Samantha, that's so cute, run faster and get presents, that's a child's point of view. Kids bounce back so much faster so I don't doubt that Sammy will be running in the halls as soon as they unhook him and let him out of bed.
My mother's heart sympathizes with you as you see your little one go through this but you'll get a lot of support from your friends here!!

 

[BarbJean]

How is it that when you want something (like to have your son fixed) and then it is that time that you are scared to death of the thing you've wanted for so long? I hate mixed emotions--- they are confusing. Sammy is showing no fear-- says he is excited to have the surgery so he can run faster and get presents...LOL... kids, right!? *sigh* wish it was that easy emotionally for the parents....

Samantha, I can so identify with what you have said. I knew our son would need surgery over the last 20 years, and yet when the time came for it, I kept wishing it away. It is so hard to have your child go through something like this. I had so wished it was me having the surgery. But, it all went well and I am praying it will for your son too. You are in my thoughts and prayers.

 

[Eva]

....................
I hate mixed emotions--- they are confusing. Sammy is showing no fear-- says he is excited to have the surgery so he can run faster and get presents...LOL... kids, right!? *sigh* wish it was that easy emotionally for the parents....

Sure you have mixed emotions...try to concentrate on the positive happy ending-ones seeing Sammy run faster and enjoying lots of new presents

Good luck and will keep you all in my prayers.

 

[Bina]

Kids tend to come through this surgery surprisingly well. Give him a big hug.
He is on the VR calendar for Sept. 7

 

[Cris N]

I sure do wish all of you the best with upcoming surgery... it'll be so wonderful to have a healthier child, won't it?

 

[njean]

Your Sammy is in my thoughts & prayers for his upcoming surgery!

Please keep us posted. Godspeed!

 

[Lynlw]

I know how you feel, Glad that your son will finally feel better and have more energy, but dreading the actual surgery and first week post op. I am glad that they will be doing the leaflet extension and hope it last a very long time. How great would it be if Sammy could get his valve by cath, We're pretty sure Justin's next pulmonary valve will be done in the cath lab (since doctors in quite a few of the best centers told us that) but the pulmonary ones have already recieved clearence.
When Justin had his Rastelli when he was 18 months, Dr. Norwood built his conduit in the OR, using mostly his own heart tissue and parts of his pericardium, in hopes it would grow with him and buy time between surgeries, he also left out a pulm valve since you can live wtith out it and we wouldn't have to worry about him outgrowing it. I know it is a little tough to try something newer, instead of something tried and tru, but His own itissue worked well for Justin for quite a few years.
You are in my thoughts.

ps Justin usually had a growth spurt after his surgeries or interventional caths, they figured his heart was using so many of the callories, his energy just getting the blood thru his body, that when his heart was working better that energy could go to things like being more active and even growing like other kids his age.

 

[grammyfour]

My surgery was done by Dr Laxs, at Ronald Reagan. Aortic repair and membrain removal from left ventricle. He is great and very knowledgable. The staff in the ICU is spectacular. I know your son will do very well! Presents huh? why did I not think of that. It has been a little over a year and I feel great. As a mom I will be praying for both of you!

 

[ejc61]

Good luck to Sammy. I was pretty optimistic also going in and I was an adult.

 

[delvalle6]

Thank you all so much. It's the nerve-wracking weeks before surgery... I came down with a cold (hoping it's just a stress thing and not contagious) and I have the urge to repaint everything--very similar to that "nesting" things you get when you're pregnant --I'm not pregnant, so it must be this upcoming surgery... ahhh... well... It's probably worse the weeks before than it is after.. I just have to keep that in mind.