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  1. delvalle6

    Update on Sammy....

    So we had Sammy's post surgical follow up visit here (in Portland) last week. He has some fluid around his heart. The doctor seemed moderately concerned and upped his aspirin to 650mg every 6 hours. We go back on Monday for another echo to see if the fluid decreases, remains the same, or...
  2. delvalle6

    sudden onset petit mal seizures after surgery??

    Sammy has started having non-responsive "staring" episodes that they think might be absent seizures or petit mal seizures. He's never had them before. Does anyone have experience with this after surgery? His heart rate goes way up while it is happening....
  3. delvalle6

    sammy's surgery went well...

    He's. Doing well. Extubated at 2am. Going to get the chest tubes out later today and maybe go for a short walk...maybe. definately should be walking tomorrow. I will update later. Thanks to all of you.
  4. delvalle6

    Preparing the home... anyone try the mattress genie?

    I'm (still) getting things ready little by little so that after the surgery Sammy will be comfortable. I found a Mattress Genie at Costco for a twin bed for $65. It has a little remote and raises the head of the mattress to various levels. His bed has a memory foam mattress on it... so I figure...
  5. delvalle6

    Officially moving to the pre-surgery forum as we have a date!

    September 7, 2010 is our surgery date. Dr. Laks at UCLA will be performing the surgery. I posted in the other forum. Thanks for all your support.
  6. delvalle6

    Sammy's surgery is scheduled!

    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...
  7. delvalle6

    *sigh* can't get my husband's primary to take him seriously

    Since our son had BAV, AS, AI, etc... everyone in our family has had an echocardiogram except for my husband. His MD refuses to order it-- or take him seriously. On top of our son's condition my husband has been having "episodes" of chest pain and palpitations followed by dizziness and then...
  8. delvalle6

    We are transitioning into the pre-surgery forum. Not sure I want to be here...

    So Sammy is being evaluated for a procedure this summer. Timing is still a little up in the air. I have a ton of questions now. We'll be traveling for him to have surgery-- how long should we stay in town after his surgery? What special arrangements should I make for him (ie special bed? quiet...
  9. delvalle6

    Anyone had the autologous pericardial leaflet extension? Any on pediatrics?

    It's official. We are moving into the waiting room. Sammy's records are being sent to UCLA to see if he is a candidate for this autologous pericardial leaflet extension. It's a valve sparing open heart procedure where they do a little "nip, tuck", turn the bicuspid into a tricuspid if possible...
  10. delvalle6

    Sammy just had his "six month" check up on the 3rd

    I wasn't really myself this visit. Maybe the last visit and the five month drag out of results wore me down, I don't know. The Dr. said his ventricle had increased in size and that we need to go back in three months. I got the impression that the increase was somewhat significant, but she...
  11. delvalle6

    I got the proclamation from Gov. Gregoire

    Just a little something I've been working on... I wrote a few letters... and recieved a sealed proclamation from Governor Chris Gregoire of the state of Washington proclaiming Feb 7-14 Congenital Heart Defects Awareness Week.:p I'm so thrilled! I'll be going to my kids school and my work with it...
  12. delvalle6

    Ever wonder if it's all in your head?

    **sigh** I can't tell anymore if I am taking note of symptoms or if I'm seeing symptoms I know to take note of. Sometimes I look at my son and he seems normal, just hangin out playing video games--happy. Other times I realize he hasn't really played in hours, and when I ask him to he tells me...
  13. delvalle6

    Interesting information on Vitamin D

    I have to say, I have always been a skeptic. One of the nurses I work with told me to give my son Vitamin D3. she was specific, saying that Vitamin D3 and Vitamin D2 have opposite effects on the aortic valve. Needless to say, I started doing research. I have now put our entire family on a dose...
  14. delvalle6

    I'm hoping my son gets this test!

    I had to call the "advice" line and speak to one of the cardiologists this weekend because my son didn't feel well and had a "twirly" feeling in his head. I wasn't sure what twirly meant- but I assumed he was dizzy or light headed. So I called. Anyway- long story short- the cardiologist I spoke...
  15. delvalle6

    for kids- tissue or mechanical.... that is the question

    I met with the surgeon approved by my insurance today. (It still burns me that I have no options or choices) He strongly recommends a mechanical valve to replace Sammy's aortic valve. I was surprised by this as a mechanical valve means coumadin or warfarin for the rest of his life. Sammy is only...
  16. delvalle6

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

    :eek: 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...
  17. delvalle6

    For Kids- what do you guys think is appropriate to tell them?

    Ok. So my son is seven. We are going in to the cardiologist on the 9th of September. How much information should he have? He knows he has a heart condition. He knows that someday they will have to "go in and fix it". That's all he knows. (or that's all I think he knows) Last night, his younger...
  18. delvalle6

    How much excercise can kids do before collapsing?

    OK- so I've been writing about my son's issues and how I can't get answers from the facility he goes to. So.. Does anyone know how many jumping jacks a normal kid can do? My son's activity level has been decreasing over the last month. I got excited because he seemed to have more energy...
  19. delvalle6

    How do you get an insurance to let you go somewhere else?

    So my son has been a patient at this hospital all his life. I don't particulary like the hospital. My insurance will not allow me to go anywhere else. He has been having more symptoms lately and the hospital will probably just blow them off. He is currently on Digoxin and Lisinopril and has...
  20. delvalle6

    Anybody know anything about the double-switch Ross Procedure?

    I just had ANOTHER evaluation for my son's AS. He has a bicuspid aortic valve which in stenotic and insufficient- leaking from two different sites. He has enlargement of the aortic root and left ventricle enlargement. He is seven years old now. It's been the seven year roller coaster that I...
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