Mended Little Hearts Open Forum

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Research Poll

  • 1.  Research Poll

    Posted 06-21-2017 16:18
    Hi All,

    I am preparing to create a children's book to help reduce stress and anxiety for cardiology appointments. As most of us parents know it's not only stressful for the kids, but us as well, so my hopes in creating this book will be a step by step process for the kiddos and something tangible they can take with them that serves as a countdown or first then model... i'm pretty sure their appointments may vary or be less depending on region and what the doctor orders, but my son Cooper suffers from anxiety for these appointments and PTSD from his little sisters surgery. So I am creating a book not only for his benefit but for others as well. So with that i wanted to see on average what the appointment times were like for you for EKG's, Echo's, Holter monitors...etc.

    **Totally dependent on the child's age and behavior, but i think if i add a baseline for the newly diagnosed it would help the parents most of all, have an idea of how long to expect. I never asked this as a first timer, i was more interested in the "why, and How" then gobbled up all the medical terms, but now my kids are older (4yrs and 2yrs) TIME means everything to us! haha.**

    Thanks all for your input! I'll keep you updated on this process. :) I am so excited to be doing this for all these heart kiddos out there. Anything and everything is appreciated!

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    Lydia Howard
    Clovis CA
    (559) 917-2843
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  • 2.  RE: Research Poll

    Posted 08-01-2017 21:21
    My daughter's CHD (thank God) is much less complex than others, so for us, a trip to see the cardiologist only consists of vitals, EKG and Echo. Maybe you could explain step by step what happens with these things, and stress that they are not painful procedures. Best of luck!

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    Aimee Gildner
    Wellsville NY
    (585) 596-1055
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  • 3.  RE: Research Poll

    Posted 08-03-2017 09:22
    Hi Lydia,

    In the beginning, when things were at a "surgical" stage or serious mode (I'm not sure how you would say that) an appointment would consist of: Exam (listening to heart), Xray, EKG, Echo, and blood draw. Obviously not everything, every time but those were the things we had done.

    Now that we are in monitor stage we do: Exam, EKG, and Echo.

    Not sure if that helps. BTW....I love social stories to help kids with things. We have done a lot of social stories for Trenton and they work so great. Simple step by step "what's happening next" is a great way to relieve stress and anxiety in situations.

    Funny story: When we were flying to Disney we did a social story for Trenton and we would act out each step. We even made "security lines" at home for them to play out what would happen at each step. Then we created a treasure map that wrote out each step of the journey with check points.....Drive to Airport, Park car, go through security, get on plane..... It was amazing that he was prepared and knew exactly what would be happening and it made the trip super smooth.

    Good luck!

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    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
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  • 4.  RE: Research Poll

    Posted 08-04-2017 14:18
    Great Idea Lydia!  and MUCH needed!
    My son has routine echo's for his CHD and I think he would like knowing what the technician is measuring, and what all the different colors represent (blue/red) on the monitor.  I wish I could explain it to him but in 11 years, I have yet to meet a tech that is willing to explain all of it to me, so that I can explain it to me son!

    Also, an explanation of the different CHD's would be helpful - for example my son has Absent Pulmonary Valve Syndrome which is rare compared to other defects...

    Thank you again for doing this!
    -Robin





  • 5.  RE: Research Poll

    Posted 08-07-2017 01:21
    ​Hey everyone,

    Just curious what everyone would like exactly explained and how in depth.

    I have 26 years of personal experience as well as did a rotation in pediatric cardiology. I see both sides of the stethoscope.

    In terms of echo though, my knowledge of all the values is limited. I can tell you some basics:

    -the heart is viewed in multiple different ways to see the anatomy. You want the technician to look at the size of both the space of each chamber as well as the size of the muscle. They want to make sure it is not dilated and the muscle is not enlarged. This could either be that the muscle has an issue or because the muscle had to get bigger to compensate for the amount of blood it has to push. The function of each valve also wants to be appreciated. You can do this by adding in the colors (blue means blood is going away from you, red means going toward you). The difference of the colors signifies a certain speed at which the blood is flowing. The faster it is, the more likely that there is a greater difference in pressure. The colors also help to see how much "regurgitation" is present. I hope this is a simplified version. The echo is usually generalized, but certain things are looked at more detail.


    if you need me to explain more, I certainly can.

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    Leon Przybylowski III, DO
    Greenville, SC

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  • 6.  RE: Research Poll

    Posted 08-08-2017 15:26
    Hi Leon,

    Thanks for that great (and simplified) version of the Echo. It would be great to be able to give kids a very simple overview of what the echo looks at. I always find it hard (even though I understand for the most part) a simple way to tell my kids...my heart kid and his siblings, what each thing means. Great info!


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    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
    ------------------------------



  • 7.  RE: Research Poll

    Posted 08-09-2017 09:35
    ​The way my own peds cardiologist simplified it was that the heart was a house. It was much easier to see with a drawing, but I'll try to extend that description as best as I can.

    You have an upstairs and a downstairs part of the house. There's a left and a right side to the house.

    The two sides should have a wall in between them. Kids with AVSDs, VSDs, ASDs, PFOs obviously don't have a fully formed wall.

    The upstairs of the house should go to the downstairs, let's say by a slide. The slide has a door so that you go down, but you should not come back up.  This door is your tricuspid (right side) or mitral valve (left side).

    Once you are downstairs, you have to go outside of the house (lungs, rest of the body). Once again, there is a door that should let you outside, but should not let you back in. (Pulmonary valve for lungs, aortic valve for lungs). The only way you can come back to the house is through the top part of the house.

    An echo looks at these parts of the houses and doorways. It makes sure that the doors are locked once you past it so it can't go backward. It also make sure that the door are open wide enough for the flow to get through. You can also look at each "chamber" and see how big that part of the house is. You want to make sure the rooms are just right. If they get too big, or if the walls of each room are too big, then there is a problem.

    Would that work as a description? Unfortunately, the views of which echoes are done, are not simple to understand. As a medical student, I was quite lost at what I was looking at. Once I got comfortable seeing enough, I had an idea of each structure and their location. The sonographer should be able to tell you at least what structures he identifies and then you can tell the child what part of the house it is. Then again, some houses are not made like the rest and that's what makes them special.



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    Leon Przybylowski III, D.O.
    Greenville, SC
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