Tomorrow the doc gives us an answer! Surgery time...

[delvalle6]

I am soooo nervous. Sammy's appt. was on the 9th. The cardio said she was going to present his case to "the board". We've been through this before but this is different. This time she could see the difference in him. I'm pretty sure I know what "the board" is going to say... it's time for surgery. I asked her what we were looking at and she said that if the board came back with the decision she thought they would he would be having surgery in the next few months. She met with the board today and i should get a call tomorrow.
Sammy had blood tests this time- a blood count to check for anemia and a basic chem test to check kidney functions and electrolytes. All came back normal. The stenosis is more firmly set in the moderate range- I guess 6 months ago it was only slightly moderate- and his regurge is still severe. His aortic dialation is moderate and the ventricle enlargment is mild. His peak velocity is 4.4 and the aortic cannulus is only 1mm off (not sure which way)

I packed up the family and drove 21hours to Palm Springs. Here we are! We went shopping and swimming and the boys watched me while I made each one of them a personalized pendant necklace. I came to forget- but I think my fears have been re-inforced. Sammy got so tired walking around the outlet stores that I had to carry him--and when I got tired my husband carried him. It was the first time I saw his mouth get that bluish tinge that everyone always warns me about.--- but to forget that...
We are going to go to the living desert, the kids museam (where they can paint a vw bug) and this place called boomers here in Palm springs. We are going to swim every day and drive to Santa Monica. We're going to go to the aquatic park by legoland also! Disneyland is out of the budget but we might try to squeeze in a little Shamu... maybe... we'll see.
Anyway, tomorrow is the big day... confirmation day... and for some reason knowing it is one thing but hearing it... I'm not sure I'm ready for that.

 

[Lynlw]

I'll keep you all in my prayers. I know how nerve wracking it can be waiting. Sounds like your having a lot of fun. What hospital would Sammy be going to?

 

[Mileena46]

No matter how hard this surgery is for one to face, I know as a mother that I had rather go through it than see my child go through it. BUT Sammy will do great, and will feel much better once the surgery is behind him. 7 year olds have a way of "bouncing back" I pray God gives you strength as his parents to get across the mountain! The journey is no good, but the destination is worth the hard times!

Mileena

 

[Eva]

Samantha,

I am including you, Sammy, and the whole family in my prayers. As Mileena said above: The journey is no good, the destination is worth the hard times. Keep us posted.

 

[srinivassusu]

,Face,face,face.......... with no fear.We are all behind u to pray GOD. HE gave the diffect in our heart.HE will solve it.GOOD luck Samantha

SRINIVAS

srinivas Heart History:
13/6/2008 2D Echo Diagnosed Ascending Aortic Dissection ,Bicuspid aortic valve, Moderate AR at the age of 38(2008)
9/6/08 CT scan shows Aneurysmal dilation of aortic root and ascending aorta with dissection extending upto brachio cephalic trunk and mild aneurysm
16/07/08 Operative findings & repair. Aortic aneurysm approx size 10 cms diameter.Aneurysm extd upto 1c m from innomiate artery. Mod. Bental DC Bono surgery procedure done to repair my anueuysm with#25 mm St.Jude medical valved conduit(SN 84094003.REF25CAVGJ-51400 AOROTIC VALVED GRAFT) At CARE Hospital Bangara Hills,Hyderabad,India. Surgeon: Dr K.s. Neelakandan gave me re birth! Dr . Sridar,Dr.Amreesh, Dr.Jagannatham completed the formalities.

 

[ALCapshaw2]

No matter how hard this surgery is for one to face, I know as a mother that I had rather go through it than see my child go through it. BUT Sammy will do great, and will feel much better once the surgery is behind him. 7 year olds have a way of "bouncing back" I pray God gives you strength as his parents to get across the mountain! The journey is no good, but the destination is worth the hard times!

Mileena

WELL SAID Mileena !

Samantha - Try to look Past the Surgery to the Goal Line, and think of the surgery as the Doorway to a Long and Healthy Life !

The Pediatric Recovery Unit at UAB has a Playroom for the kids after surgery. It's the Parents who seem to have the hardest time !

Do what you can NOT to pass your fears along to Sammy.
I expect HE will do fine.

 

[terryj]

I am sending up prayers for Sammy and your family.

 

[Ross]

Imagine for a moment, Sammy being whole again and running around tiring you from running after him! That's what it's going to be like.

 

[ottagal]

Keeping you and Sammy in my prayers.

 

[briansmom]

Boy I wish we could come visit you in Palm Springs right now. I usually try to escape there at least once a year. Frankly, based on what you are saying, if they don't say it's time for surgery, I would recommend that you fight hard for it. Like others have said, he is going to be a different kid after the surgery. He will be able to run around and play again. I know it is scary thinking about surgery, but it is even scarier to put it off any longer.

My heart goes out to you, I know how horrible it is to watch your child go through this. But I am 99.9% certain that if you get the surgery soon, you and Sammy will come through with flying colors.

 

[Danny]

Sammy will be in my prayers also, continue to be strong for him. Pretty soon, like Ross said, he will be running around getting you two tired. Stay positive

 

[Star54]

I have the mental picture of you carrying your son, that is powerful. I will pray that you are all carried through this....Godspeed.

 

[Kathy McCain]

Samantha,

You, Sammy and your family are in my prayers. You WILL get through this! Sammy is going to do great! Just think, he will be able to live normally.

He will have it all behind him soon! As we say on the forum, he will be "over the mountain"!

God bless

 

[EireCara]

I will pray for Sammy and all your family.

 

[kpearse]

Keeping you and Sammy in my prayers.

 

[delvalle6]

So, it seems official. The cardiologist says we need to rule out a few things before scheduling surgery. So Sammy has an appt. with his regular pediatrician to rule out thyroid issues. We need to schedule a stress test. We also have an appt. on the 2nd of October to speak with a surgeon.
We know that he is going to have surgery within a few months. We just don't have a date yet.
Thank you all for your thoughts and prayers.
I am well aware that he will do much better with this than I. It was like that with the pregnancy (Twins-I thought I was gonna die!) It was like that when he was intubated at four months old...and it is like that every time we go to the cardio. He's like "no big deal" and while I act like that around him, inside I'm just a jumble of upset.
don't worry about him knowing my big fears- he doesn't- that's what you guys are for! It is truly a blessing to have this site to come to.

 

[njean]

Wishing your Sammy the very best & I will keep all of you in my prayers.

Sammy has youth in his favor & soon he'll get fixed up so that he can enjoy his whole life ahead of him.

 

[Eva]

I feel with what you are going through and will keep you and Sammy in my prayers. Keep venting here and keep us posted.