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Daughter's heart... tests Thursday again

post #1 of 15
Thread Starter 
Howdy gals and fellas, a few vibes and thoughts here please...

My daughter had heart surgery in January of this year to plug a hole which was found last October. Long story short, for 8 yrs, her heart was working "too hard". Her heart muscle has toughened (like what happens in seniors), and her left ventricles are enlarged.

The worst thing though is her blood pressure INSIDE her heart; it is 5 times higher than that of a normal 8 yr old girl.

She was put under and catheterized (ran the plug up through her femoral artery). It was very rough for the family but we made it through the worst, and Emmy did just wonderfully. Great hospital. However the bad news afterwards has left us all feeling sad, because my daughter has to have Echocardiograms (ultrasound of her heart) every 6 months "forever", and she will have to be re-catheterized through her leg - up to her heart - to measure her BP. She goes in this Thursday for her 6-month Echo; and before December, to check the pressure in her heart.

If this problem would not have been found --- she would have died from congestive heart failure. This problem is typically found and taken care of in the first few WEEKS of life. Cincinnati Children's Hospital said she was the oldest patient they'd had in years for this problem.

Em's been fine, except for weight gain. No more profuse sweating, redness in her face and all that horrible coughing -- which was due to the hole in her heart causing blood to go into her lungs!!! She now has a Titanium plug IN her heart --- which is hopefully going to balance things out... worst case she will need to be put on BP meds which will wear her out, and the 'even worst case' is a transplant later in life.

So I'm starting to have the nightmares all over again. I know Thursday is just a test, only a test... but the doc said that it's been 6 months and this test Thursday, to see a picture of Emmy's heart... will see if the heart muscle has returned to normal size. And then the cath later this year where they knock her out and check the pressure inside of her heart.

Can you guys help to quell my fears? Support from this board is just wonderful... I could use some good thoughts for my daughter. Only child, means the world to me.

Thanks y'all
post #2 of 15
Wow, I really don't know what to say and I can only imagine how scary this all is, but like you said, it's only a test. Take it one step at a time. Good luck and I am send good vibes...
post #3 of 15
I dont know what to say either. I cant even imagine what you are going through. You and your daughter will be in my prayers and thoughts!
post #4 of 15
*fingers crossed* I hope it's all for the better!!
post #5 of 15
Many thoughts and prayers to you and your family (especially your daughter.)
post #6 of 15
I am so sorry for the stress your family is under. If you ever want to see me lose it, watch me when I am worried about one of my children. So I do understand.

I think what you are experiencing is mostly just the normal worry that anyone in your situation would feel. But maybe you have some feelings almost like post traumatic stress disorder. You remember the concerns and fears when she had the operation, and it feels like the hospital is a scary place.

But the hospital is where they saved her life. The hospital is where she began to lose the redness in her face, and the coughing. They are good people who want to help. (I know you already know this!)

Can you plan a special treat with your daughter for after the appt? Maybe a movie, or something else fun? If you are feeling very stressed, maybe she is too. And remember, most of these f/u appts are just to be sure she is improving. It is not to make her an invalid her whole life.

If the stress becomes overwhelming, please call the doctor's office, and let someone know what you are feeling. Maybe they can offer some help. Maybe she is the oldest child to go through this treatment, but a support group with other parents whose kids are now doing well could make a big difference.

My prayers go out for you and your daughter! What a lot for an 8 y/o (and her Mommy) to go through!
post #7 of 15
Oh you poor dear girl...I cannot imagine how difficult this must be for you. Please keep us informed about how you & your daughter are doing.
She will be in my thoughts & prayers.
post #8 of 15
Many thoughts and prayers and good vibes for you and your daughter Hope all goes well.
post #9 of 15
Awwwww your poor little sweetheart. Of course she means the world to you and you are terrified. You wouldn't be a great Mom if you weren't. Many thoughts and good vibes headed your way.
post #10 of 15
Awww. what a great little trooper.. I am sending all the best vibes in the world.
I don't know if she has the same problem as my best friend who was born with a heart defect (but it wasn't caught until he was 14!!! and his mum still blames herself the poor woman)..
He has titanium valves and I always tell him to this day how cute it is that he "ticks" when I press my head to his heart..

I am so glad she seems to be doing well and may she go on to bigger and better things..

Hugs to you and yours

p.s my friend is now 32 and going strong so she WILL beat this!!!
I am always concious that he has to take 5 medications daily for his blood pressure and other things and he attempts to eat well and has to see his doc every 6 months also but that is the only way he is affected today...and its second nature to him now..
post #11 of 15
I am sure she will handle all the tests well. I see kids cope with so much and they are just marvels.

I understand the being a patient side too - not just from my work. I have to undergo echos all the time too - it is a very simple test actually, not intrusive in the least. The other is a little more involved but I really think like me, that once it is part of her life- she will adjsut exceptionally well. I have undergone these tests since I was 8 (when I had open heart surgery - it was very new then, the heart lung machine especially). It is now just routine for me!!

I'll think good thoughts for you and Em.
post #12 of 15
Thread Starter 
Thanks you guys... I knew you'd understand!

She told me last night she really liked the hospital where her surgery was performed... it was like a day at the circus for her! I think she got confused, she thought she was going to be put under and have her leg cut again (the tether to her heart) but that's not for another few months. Thursday, is the Echocardiogram where we see if her heart is still enlarged and how the plug looks.

She got teary last night because we were talking about her Poppie... her daddy's dad. He had a quintuple by-pass 12 years ago and in the last few months has really gone downhill. He's had stints put in and a load of problems with his heart. She said, is his problem what I have? Is he going to die? It was sad because I think Emmy associates her heart problem with her Poppie's... it's not the same thing but both her and Poppie have had the same tether run to their hearts lately, same processes done.

So I'm just crossing my fingers and really hoping her heart isn't enlarged any more. I hope putting that plug in there has helped her.

Yah Thursday I'm taking off work, maybe afterwards we'll go to Graeters and pig on ice cream!

Still I will worry, I'm really good at worrying. I wish I could get paid to worry, man I'd be rich. It's a mommy thing.
post #13 of 15
You and your daughter are in my thoughts and prayers.
post #14 of 15
Stephanie, your daughter is such a brave little girl! It's so good that you two have each other during a time like this. I will be praying and thinking of you and little Emmy.
post #15 of 15
You are right. Worry is a Mommy thing ... especially when it is about your own sweet child. I will be praying that Emmy's little heart is stable & that her doctors will have good news for you on Thursday.
I am so sorry about her Grandfather. You are having a rough time girl. Please, try to take care of yourself.
A big bowl of ice cream sounds like a great idea.
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