Prayers needed for our daughter

[bvdr]

She is beautiful!...and you and your daughter sure look alike! I hope your appointments both go well

Betty(bvdr)

 

[nadi]

Beautiful!

Beautiful!

I hope and pray both appt will come out fine and that they will not be long waits in the ofc's. A terrible way to spend a summer day. I remember when we lived in Chicago (13 yrs ago)there were a few times that we waited 2+ hours to see our Dr. Good thing we liked him LOL

Your daughter is beautiful

 

[hensylee]

They are both so beautiful - and both look so content to be together. I am glad to know that you have jumped on this with both feet to get/keep the ball rolling. Gina. Mommies can be tigers, can't we? You just keep on going as you are and you will have answers quickly. Bless you all. Ann

 

[Nancy]

Beautiful daughter, beautiful mom. God will smile on you both. We're all here for ya'. We don't care what you say.

Take care,

 

[Lorraine]

Gina,

They are both adorable!

What a drag about them not being able to locate the records! Sometimes all the aggravation makes you want to just transport the recorde yourself! Such incompetence! Your cardio cancelled again? Sounds like you handled both your and Karas appointments the best way you know how. Taking the Bull by the Horns! Go Gina!

At least your daughter is having fun this week. It's a good thing you decided to let her go ahead and go. Imagine if you would have kept her home and then found out you couldn't get anything accomplished anyway! I would be blowing a gasket too!

B&M all you need to! We're here for you! I'm sure it will all work out. It's just the delays that get to you! Think Positive! Take care and God Bless!

 

[McCln]

Gina

Gina

You were so correct to get your daughter a physcal. Too many parents mever try to be sure that everything is alright when there is a family history. And with the doctor's losing files, happens all the time when you go over their heads. This or that come up missing so the child has to be tortured much more. Just hang in there. Things will be fine and there are answers to your question wth the right person. Take care and hang in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Yokena]

From another RBBBer

From another RBBBer

Hi Gina,

I hope by now you have some more information on the right bundle branch block, and specifically how it may affect your daughter. I have the RBBB in addition to Ebstein's anomaly (corrected July 01) and a bicuspid aortic valve.

The RBBB affects the heart rhythm, as you already know. In my case, it only affects me when I'm really, really tired. When I was a child, I was a very active little girl. I loved to ride my bike, was in the Girl Scouts (camped, hiked, did it all). My heart would beat really hard and somewhat fast, and sometimes skip beats, when I got hot and tired, usually at the end of the day. I don't think the RBBB affects your stamina. It's hard to say since I had the other things going on, too. Mostly, I never knew the difference, tho.

Looking back, I think I was active in spurts, then would stop to catch my breath. We didn't have any girls sports back then, so I never tried track or tennis or the like. I rode my bike for hours, but then you can coast some on that.

My guess is that if you haven't already noticed your daughter having problems, she's not going to have a lot of trouble with this for a long time. You'll both be in my thoughts and prayers.

Joyce in Mississippi

 

[LUVMyBirman]

Joyce thank you very much for your reassurance. You are correct, she's a little ball of fire. Sounds like you were in high gear and feeling great for many many years. I do take comfort in that you are ok after such a long time.

On the other hand, I am scared to death at the thought of my daughter going though any type of OHS in her life. I am ok, made it though but would not wish it on anyone. It would tear me up even 30 years from now.

Can only take one day at a time. No call from the pediatrician. What the hell, excuse my language is going on these days? Still have the standing appointment that I took the liberty of making myself with a peds cardiologist Monday.

I did call my cardiologist and asked for his opinion for a peds cardiologist. He is not recommending Loyola for some reason. Now I am confused. Do I just proceed with the appointment or change out to the recommended doctor? My cardiologist is highly regarded so maybe I should trust his opinion. Ahhhhhhh.


At least Kara is off having fun with her auntie at summer camp this week. She sounds so happy when she calls. And that's what it should be all about... summer fun. I am going to try to carry all of the burden for her. Like any child when they know it's an appoinment for them they lose it.

Thank you so much everyone for your support and kind words. It means the world to me!

Think I will go draw a hot bath. Not before I wash all of the paint out of the tub from Ms. Abby, LOL

PS. Joyce, I had to go back and read your post again. Kara rides her bike for very long periods of time just like you did! She wants me to buy one so we can both ride. She has been is scouts since Kindergarten too.
Did they find your RBBB before or after your surgery?

 

[Yokena]

RBBB

RBBB

Hi Gina!

Sure sounds like Kara is doing really well. I'm glad to hear she's up to some of my old tricks. The RBBB was diagnosed when I was a small child, about Kara's age, I guess, but the other two defects, not until my late 20's. There's a whole long story there, but lets just say I wasn't getting good medical care. The Ebstein's anomaly was diagnosed when I was 27 and no-one caught the bicuspid aortic valve until I was at Mayo in 2001 (age 46) for my surgery. Obviously, I was doing pretty well, health-wise in spite of my doctors.

I think that I'd set up that appointment with the ped card your doctor recommended, but maybe still keep the other one, too. Can't hurt to get two opinions. Just my opinion, which isn't worth much. You can always cancel the second one if you like the first doctor. I think Kara will react to all of this the same way you do, so try to be a calm mom for both of your sakes! Easy for me to say, I know!

Anyway, hope things go well for you. Keep the board posted.

Joyce

 

[Tammy]

In My Prayers!!

In My Prayers!!

Gina -

Just popped in and saw your post. I will be saying lots of extra prayers for Kara as well as you and Tracy.

It's times like these that you wish you had a magic wand and could make everything better. Just keep the faith. With all the prayers coming your way something positive is bound to happen.

With Love,

Tammy
MVR 04/06/89

 

[mommywri]

Hi Gina,
I was so sorry to hear that your daughter may have a heart conduction problem. My 14 year old daughter had complete heart block and required a pacemaker implanted at 9 years old. You may already know this but a pediatric electrophysiologist seems to be the best person to deal with conduction issues in children. I'll be praying that your daughter doesn't require a pace maker--just careful watching.

--Martha (mom to Christina Aortic(truncal) valve replacement 10/02, pacemaker, endocarditis, 3 open heart surgeries

 

[LUVMyBirman]

After a painstaking week I get my hands on what I thought to be the actual ECG on our daughter. I looked at the top and it was not the same. Normal findings. Which is great, but what happened to the bundle branch block? So I ask. They tell me after the university doctor reads it he forms his "opinion".
So the ECG results are overridden based on a visual opinion?

Well,I am sorry. Don't buy it and have never heard of such a thing in my life. She's going for a second opinion and repeating the ECG. I am also demanding an echo. If they won't pay for it. It will come out of my summer vacation fund. I am so frustrated and need an answer. If they find some sort of condition after her doctor said "not to worry about it". There will be heck to pay.

My parents were told "not to worry about it" she will never have a care in her life with that valve. All you need to do is take one good listen to my heart and observe the scar on my chest to see the "picture" of a normal woman in her 30's! Sure. Our main objective, since there is "family history" is to make sure she is covered for infection control providing she has an underlining defect. Is that too much to ask for?

 

[Nancy]

Good for you Gina, you take care of your little one.

 

[Georgia]

You go, Gina

You go, Gina

Prayers help; but your daughter needs a tough, aggressive, determined mom - and how lucky she is to have one! Once the medical establishment understands that they're going to have problems if they screw with you or your daughter, they will make the extra effort to provide good care.

Been there, done that - you're such a good mom, Gina - I salute you.

 

[Hank]

ECG Interpretations

ECG Interpretations

The ECG machines will give a wrong diagnosis about 90% of the time. I did 12-Lead ECGs on patients for 10 years and we NEVER trusted what the machine calls a particular rhythm.

This is why the ECG's are saved up for a cardio doc to make a more accurate diagnosis.

Once the doc either verifies the machines result or determines the correct result, the patient's doc is given the results.

Might help - I hope so anyway

 

[LUVMyBirman]

Hi Hank,

Yes, that helped a whole bunch. And why is it your not in the medical field any longer If we had received such an explicit and logical explanation...... I would not be bent out of shape.

To be honest I would not have second guessed the doctor if it were not for the family history, etc. My valve disorder was detected at age 8. So Kara was a year away from a full workup. Just sooner than expected.

Thank you for clearing things up. I do feel much better

 

[Aunt Granny]

Your Daugher

Your Daugher

Your daughter IS BEUTIFUL. Sometimes parents have to be fighters for their children. I know my sister has had to be in the past. God's love and peace be with all of you.

 

[Gisele]

Gina I am thinking of you,

Gina I am thinking of you,

I would request 2nd opinion and re-do the EKG. Once we had a patient sent to our office immediately by a PCP who was closeby. Her EKG was abnormal. I can't remember if it was an MI that showed on the PCP EKG, but I redid the EKG for our records and the second one was normal. Seems the medical assistant at the PCP mixed up two of the leads.

Mixing up the leads could cause a problem, but a good cardiologist can usually look at the EKG and know immediately that the leads were mixed up.

Good luck.

 

[sylviayasgur]

hi gina!
i haven't been on for awhile and just finished reading all these posts...
i agree, a second opinion could never hurt.

i'm so glad to hear that kara is in camp and having a blast. she is so beautiful; looks just like you.

i,too, took our girls to our cardio for a look-see last summer (since joey's bicuspid valve was congenital). their pediatrician said that although she had not heard any murmurs, it would be a good idea just to be sure all was well.

rachel, our eldest, got a totally clean bill of health. jamie, our "baby", was fine, except that there is a sequence in which you are supposed to hear one's pulse (i think it's in the leg first and then in the arm). jamie's sequence is reversed. she is a very avid dancer (atleast 18 hours a week during the schoolyear and 6 hours a day this summer). she is very fit.
also, her blood pressure in her leg is supposed to be higher/lower than that in her arm.... this too is reversed although she has normal to low blood pressure.
we went for a recheck a few days ago and nothing has changed (he thought he might have misread the figures last year, or missed something).
she is still very fit and active. last year's echo showed nothing unusual.
the cardio is not overly concerned since she is not showing any symptoms. he does, however, want to do an MRI before she goes to college (2 years away). he does not want to alarm her right now and feels there really is no need for it now.
he mentioned that "aortic coarctation" is what he may be concerned about, but if it is that, it is extremely mild.

so, i try and not think about it because the thought of it really makes me upset and teary.
i can relate to how you must be feeling. rain and some others here have kids who have been through ohs and i give you all such credit for being so strong.
i agree that a positive attitude is so important.

gina, i hope all turns out well or to be minor. please let us know what happens.
you and kara are in our thoughts and prayers, sylvia

 

[Kathie]

HI Gina,

Your daughter is beautiful. I will keep her in my thoughts and prayers. I'm so sorry she (and you) have to go through this scare. I'm sure all will turn out fine.