Mended Little Hearts Open Forum

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  • 1.  Appointment Ideas

    Posted 03-20-2017 17:10
    Hi all, 

    We are having some difficult appointments with our 4 year old son, Cooper was born with Complete Atrioventricular Block. Since he turned 3 yrs old the routine appointments have become so difficult with his EKGs, echoes, and halter monitor's. We talk and pretend play leading up to the appointments, some times it goes well, others he cries the entire time. We have tried snacks, books, distracting him, signing songs, being silly...nothing. Bribes with follow through... nothing works. This all started after his sister went through getting her pacemaker, he also stopped sleeping in his own room since her surgery in july. Wondering if anyone here has gone through this phase, we are praying it's just a phase. It doesn't matter what time of day the appointment is at. Just thought i'd reach out on here with a broader audience and seek some advice here. The other day he did say he wanted his special heart machine like sister, but then took it back when he thought about his sister in the hospital. We had him visit her once the breathing tube came out, however i stayed with her the entire time, and he's my shadow, so i am assuming he's still trying to work through everything and is becoming more self aware of his "special heart" (he has begun to call it his broken heart... I blame Doc McStuffins for that term, but we talk through it and say it's not broken, it's special and one day he will have a special machine, like ironman that will make him stronger and extra healthy...) We all try and remain calm, and explain stickers don't hurt, and he was able to calm down faster this time, but once he shirt comes off and stickers are placed, he screams so hard he's broken the little vessels around his eyes. :( i am at a loss... Praying it's a phase that's coming to an end SOON! 

    Thanks all! 

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    Lydia Howard
    Clovis CA
    (559) 917-2843
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  • 2.  RE: Appointment Ideas

    Posted 03-21-2017 02:48
    Before my son's open heart surgery at age 3, we read a book called "Can You Fix Me?" with him regularly. It's about a little girl going through heart surgery, and it tells the story in a sweet and non-scary way. It might be worth a try. The book is by Ann de Bode. 

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    Amanda Fagan
    Oxnard CA
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  • 3.  RE: Appointment Ideas

    Posted 03-21-2017 08:07
    I'd love appt ideas too. My son has always struggled with cardio appts and he is 8. He finds them very stressful. We've tried play therapy, therapy, and so on. Our most recent one was a few weeks ago and he had a complete meltdown, started sobbing in the middle of the appointment and yelling about how he didn't want to be there. He really resents his heart condition and now that he can understand the questions we bring up during appointments, he gets a lot of anxiety being in the same room and having to listen to us discuss such weighty issues about his life and health. What do you guys do as your child gets older about those appointment questions in conversations that might make your child very scared or nervous?


    ------Original Message------

    Hi all, 

    We are having some difficult appointments with our 4 year old son, Cooper was born with Complete Atrioventricular Block. Since he turned 3 yrs old the routine appointments have become so difficult with his EKGs, echoes, and halter monitor's. We talk and pretend play leading up to the appointments, some times it goes well, others he cries the entire time. We have tried snacks, books, distracting him, signing songs, being silly...nothing. Bribes with follow through... nothing works. This all started after his sister went through getting her pacemaker, he also stopped sleeping in his own room since her surgery in july. Wondering if anyone here has gone through this phase, we are praying it's just a phase. It doesn't matter what time of day the appointment is at. Just thought i'd reach out on here with a broader audience and seek some advice here. The other day he did say he wanted his special heart machine like sister, but then took it back when he thought about his sister in the hospital. We had him visit her once the breathing tube came out, however i stayed with her the entire time, and he's my shadow, so i am assuming he's still trying to work through everything and is becoming more self aware of his "special heart" (he has begun to call it his broken heart... I blame Doc McStuffins for that term, but we talk through it and say it's not broken, it's special and one day he will have a special machine, like ironman that will make him stronger and extra healthy...) We all try and remain calm, and explain stickers don't hurt, and he was able to calm down faster this time, but once he shirt comes off and stickers are placed, he screams so hard he's broken the little vessels around his eyes. :( i am at a loss... Praying it's a phase that's coming to an end SOON! 

    Thanks all! 

    ------------------------------
    Lydia Howard
    Clovis CA
    (559) 917-2843
    ------------------------------


  • 4.  RE: Appointment Ideas

    Posted 03-21-2017 09:02
    My son is 6 years old. It took him this long to stop crying when he had an echo. He use to cry when he got in the room until it was done and we were in the room to talk to the doctor. When we got in that room he would say he did not want to be there, he was ready to go home. The last two times he has not cried. They had a tv in the room, they would put it on a cartoon and it would keep him claim. They have told me when he was younger it is the age, they all do this.

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    Kristi Gray
    Greenbriar AR
    (501) 730-3226
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  • 5.  RE: Appointment Ideas

    Posted 03-21-2017 10:08
    We struggle with appointments as well. Some tricks I have tried are food bribes (I know...not great) for holding still during the echo. I always promise to take him to eat somewhere after for french fries, his favorite. We also take the Ipad and I have him take selfies and watch himself (He loves this). It's kind of hard for me because I have to hold the Ipad above his head and take photos haha. But, it helps. I also let him watch videos while he's laying there. It's not perfect and we still struggle though. 

    We use the freeze dance for the EKG. Once he's hooked up we do freeze dance with music from my phone and then we try to get him to stay "frozen" for long enough for it to register a good read. This has worked rather well for us. We also let him take off the lead line stickers. He used to freak out. Now....We let him take them off. Sometimes he takes them off right away and sometimes they stay till later, but in my opinion, I don't care. He's not crying and getting upset in the ofice so I'm good with him leaving them. 

    I love hearing other ideas. Our annual visit is coming up and I'm hoping it goes well. 

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 6.  RE: Appointment Ideas

    Posted 03-22-2017 11:22
    Good Morning!!  I have also had challenging appointments; here is what works for us.

    1) Echos: We were fortunate when our son was a toddler to have a brilliant technician. The very first time in the hospital, I was told they may have to sedate our son because he was so terrified and was sobbing, wriggling etc... BUT the tech suggested that I lay down on the exam table and he lay on top of me while I held his hand. And she was able to get the echo done this way! 

    Over subsequent visits, I would keep lying down on the table for the echos and he would lie on top of me. This helped him calm down immensely during the echo. The fear before the appointments started lessening.  Now, he's six and he's been able to get the echo done by himself for awhile.    There is hope- It can get so much better!!  (They also have a TV in the room for distraction, but an IPad or smart phone might work too.) 

    2) EKGs: I second Margaret's idea to let the child take off his own stickers.  For some kids having the control may help, especially if they have sensitive skin and prefer the stickers to come off more quickly or slowly then the nurse may do it. 

    Another idea is to see if the doctor's office will let mom or dad do a mock EKG. (I haven't had to do this, but it's a thought.) You could model whatever you think your child needs to hear.  E.g.: "Hmmm...these are sticky.  I don't like them.  Oh, I guess it's ok. I'm going to hold X's hand and see if I feel better." Perhaps it might be worth a call to the nurse ahead of the appointment to see if he/she would be willing to do this. 

    3) General: I dislike the idea of bribing the kids, but in the end, you have to do what you have to do to get through the appts.  Things can always change in the future. 

    I take our son out to lunch afterward.   (If you rarely eat out, this can be a big treat.) I also stop at Target, Walmart etc..and let our son pick out a toy.  (Since he has a brother, we'd pick something up for his sibling as well. This reduced a lot of the "It's not fair!" stress.) We make a whole day of it and now our son is in school, missing school to have lunch out, get a toy and have one-on-one time with mom is not a bad sell:) 

    Please let me know if you have follow-up questions.  

    Julia 


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    Julia Painton
    McLean VA
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  • 7.  RE: Appointment Ideas

    Posted 03-22-2017 15:42
    Hi Lydia!

    I have a 5 year old boy who was born with transposition of the great arteries with double outlet right ventricle, coarctation of the aortic arch, and a ventricular septal defect. He has had two heart surgeries (BT shunt and Bi-directional Glenn), so his heart basically has two chambers (even though he was born with four chambers) because they could not correct the arterial transposition. He also needs to have annual ECG's and echocardiograms, and used to cry and scream so much at appointments that he would throw up. We started showing him two youtube videos: one of a little boy getting and ECG, and the other of the same little boy getting an echocardiogram. They are great! The little boy is Australian and about 8 years old and he narrates the videos. My son watched them a bunch of times before we went to the cardiologist, and didn't get nearly as upset at the appointment! Now he is fine during both tests, but he still likes to watch "Domenic" (the little boy in the videos) get the tests before we go to the doctor! This may help, but he also watches videos during the echo and it has also gotten better as he's gotten older, so age may play a part too. Here are the links for the videos:
    ECG: https://www.youtube.com/watch?v=KafjwdtGIfQ
    echo: https://www.youtube.com/watch?v=P1KZup7AJjw
    They are short (1:27 and 2:45) and not scary at all.
    I hope they help! Good luck!

    Debby Howell

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    Deborah Howell
    Johnson City NY
    (607) 797-5476
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