Hi All! 
Update on us...
Kelsey went to the Ped. Cardiologist today. Now her last appointment was almost 4 months ago. We decided to consider changing pediatric cardiologist's, and we went back to the Card we got a 2nd opinion on before her TOF repair surgery. Kelsey was about 6 weeks old when this Card has last seen Kelsey. Anyway.. we went back to this Card because of her reputation (she is a Ped. Card at Children's hospital in Dallas) and we got a very good referral from one of the top Adult Cards in the US to go to her. So.. we decided to go back now that Kelsey is healthy and it is a good time to switch doctors, plus we really were not to fond of the Card Kelsey has had since birth. Just never got a good picture of what was in store. We learned more on our own it felt like. Anyway... so the update...(keep in mind Kelsey does not have her Pulmonary Valve due to it being to narrow and defected, and had to be destroyed in repair surgery)
Today- After doing an X ray, an Echo, and looking at all the records that were sent from Kelsey's regular Card... here is what this Card told us. Kelsey could very much been a teen before needing a Pulmonary Valve. Actually Kelsey could possibly be an adult before needing a P- Valve and could possibly never need multiply open heart surgeries for valves. Also... Kelsey is in the upper 10% which makes her better then 90% of TOF kids right now.
Yes,... go ahead...you can applaud!! And we can take a sigh of relief!!! Heck yes! Amen!
That was not what we expected to hear.. but it was mixed feelings hearing it. Basically Kelsey is looking very good after her TOF repair.. and was in the upper 10% of kids at this stage. We thought she was low in weight cause she has not gained even a 1/2 a pound in months. Kelsey apparently, to this doctor, is in the 25%, and growing perfectly to her height. In the doctors view...Kelsey looks underweight cause there is many obese children these days. The doctor MUCH rather have a "normal" weight heart patient then an over weight heart patient. So she was extremely happy with Kelsey's weight. (Side note.. for those that are doing the Pediasure to help your child to gain weight.. she recommended Carnation shakes instead. Same calories, but tastes better she said. We will try a few of those I guess).
We are supposed to go back in 1 year (GOSH that feels so good to say.. in ONE WHOLE YEAR!) and at that time the Card wants to do a oral sedation, put Kelsey asleep, and get a very good echo on her. Has anyone had this done, sedation for a echo for toddlers/children? Kind of makes sense, so they are not moving or crying.. but do you know if they really get a better view? Feedback on this anyone?
This Card is very much up on her heart conferences and in the know (it seemed). She talked about how the pendulum is swinging a different direction, and rushing to put a valve in is maybe not the best. She said if you ask 10 Cards their thoughts though, you will get 10 answers. We loved the fact Kelsey could be past her teens before needing another surgery IF she needs one. But once you start putting valves in, you have to keep replacing them at this stage medically. Maybe that grown tissue research, to make Kelsey a valve with her own tissue will be her one and only PV. Who knows. I just know it seems we are very blessed and have many years to wait and see.
I asked about thrill rides.. she said Kelsey has a different heart defect then the warning signs posted above the roller coaster entrance. No problems with rhythm, she can ride them all she said. Sweet!
Again the Card reminded us.. treat her normal! She recommend us steering Kelsey into sports like Softball, golf, band etc, that are not hard running sports. That in around 7th grade, she will just not be as competitive say, then others. So not to lead her for a downfall. Just steer her to the sports that do not take running, like Track and Field, or soccer. Soccer at 5 years old is fine, but she will not be able to do Club soccer doc said. She suggested we not tell everyone constantly about her TOF, that act like she is normal, she needs to feel normal. Doctor talked about how years ago people pushed the heart problem so much, kids were using it as a crutch and excuse.."Oh I can't take a math test.. my heart". That is an exaggeration, but I am saying the doctor feels not to constantly hold it over her head so that she falls back on it. Treat her normal. (Believe me, I am not saying we won't ever talk about it or tell her teachers and such. I just wont be yelling at her .."Go Play.. but remember your heart!")
Well.. guess that is it. My Kelsey is doing great! We go back in ONE WHOLE YEAR! Heck yes!! What a relief. Think I am taking Kelsey to Six Flags tomorrow!! (j/k hehe). As you can tell.. I am relieved and happy for this news.
Anyone with sedation echo feedback, let me know. Thanks.
All you parents with newborns, or you are pregnant with a TOF baby...I wish you well on your journey and I wish you the strength and really hope you get to the place I am at today. Take care everyone, and hug your heart babies!! (And a hug to you heart adults too!)
(I will try and attach a pic of my tired baby girl. 7 am appointment.. got us all up way to early! This was the only time she sat still for a minute. Notice.. you can hardly see her scar in this shot.)
Nancy- Mom to Megan 12 (HH) and Kelsey 20 month old making us laugh everyday for all the new things she says (TOF 
repair at 10 weeks old 9/14/06)
