Mended Little Hearts Open Forum

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  • 1.  upcoming cardiac cath for son with Truncus Arteriosus

    Posted 08-25-2023 13:12
    Hi, everyone,

    I have a 13 year old son with Truncus who is going for his first heart cath this coming Tuesday.  We have done all of his procedures at Lucile Packard in the SF Bay Area, but now we are living in MA and will be doing this procedure at Children's Hospital in Boston.  Unfortunately, we don't feel like we're being adequately prepared for what to expect.  I understand this is a very different procedure from his past open heart surgeries and the other surgeries he's had to undergo, but I don't have a sense of whether he'll be in pain after, how long I should expect for his recovery, and so on.  Unfortunately, he will be missing his first and maybe second day of school for this which is causing him more anxiety.  My son also is on the high functioning end of the autism spectrum and has anxiety and OCD as well.

    Any words of experience or encouragement or ways to help my son feel prepared would be greatly appreciated.  We go in for his pre-op on Monday and I understand some of our questions may be answered there, but I'd like to feel more prepared than I do.

    Thank you!

    Marcy de Araujo

  • 2.  RE: upcoming cardiac cath for son with Truncus Arteriosus

    Posted 08-26-2023 08:36
    Hi Marcy,
    I’m a CHD survivor and have had several caths over the course of my life. Most recently in August of last year. I can tell you that though everyone’s threshold is different, I have never experienced much pain from this procedure. The only pain is at the incision site which tends to be fairly small but there is soreness and some pain at the site. It is not pain like open heart and in my experience has been easily resolved with something like Tylenol. In case they didn’t mention, they will likely keep him for a few hours or overnight for observation to ensure the site stays stationary. There may be a pressure bandage or a little sandbag used to keep pressure on the site during that time.

    Any procedure is nerve wracking and I certainly understand the anxiety. You may ask if they can give your son something for anxiety as they usually do prior to the procedure. I think it’s part of the anesthesia if I recall correctly. Also, never hesitate to call them with questions. I certainly don’t :)

    I hope this helps!

    Sending you heart hugs and love,

  • 3.  RE: upcoming cardiac cath for son with Truncus Arteriosus

    Posted 08-26-2023 14:55

    Thank you so much, Lauren.  I really appreciate your insight and information.  Every little bit of information helps me feel prepared and know what to tell my son!


    Marcy de Araujo
    Franklin MA

  • 4.  RE: upcoming cardiac cath for son with Truncus Arteriosus

    Posted 08-27-2023 02:33
    Hi Marcy,

    I've found these patient procedure sheets at our Pittsburgh Children's  Hospital very helpful.  

    I hope the link opens ok for you.  If not, let me know.  I'm also a CHD survivor and am 56 now and doing well!  My last catheterization was some time ago at age 10.  I remember having soreness at the entry site (groin area) for just a little while and a burning sensation when the dye was placed in. I was groggy during the procedure  but remember that the doctors and nurses were awesome at reassuring me. 

    I'll be praying for your son and for you! 


    (Now back in Pittsburgh) 

  • 5.  RE: upcoming cardiac cath for son with Truncus Arteriosus

    Posted 08-26-2023 12:39

    Hello Marcie,

    I too have a son who is 13 with a complex heart condition. While different condition from your son, I can tell you that when Oliver had his open heart surgery, multiple catheterizations, broken elbow surgery, and more at Boston Children's, the pain management team is top notch. Oliver was also very anxious ever single time, and in each instance, he was kept extremely comfortable at all times, mostly he doesn't remember!  The team checked in on his pain level and modified quickly. I have no hesitation in telling you that your son will be in good hands. Be honest with the staff, and they will be there for you and your son. 

    Best of luck, you'll be in my thoughts and prayers. Welcome to Boston area!

    Sara Houser
    Medway, MA

  • 6.  RE: upcoming cardiac cath for son with Truncus Arteriosus

    Posted 09-05-2023 08:31

    Hi Marcy! My name is Jenn Angelone. I live in Hudson MA, welcome to Boston! I'm a heart patient at Children's as well as a mental health therapist - I've worked extensively with children on the spectrum AND with anxiety/ OCD. Most recently I've started seeing heart patient clients through the Ollie Hinkle Heart Foundation - they are imbedded in BCH and if you haven't connected with them yet, I definitely recommend.

    I've had both OHS and catherizations, granted, I was an infant at the time so I don't remember much, but thankfully, catherizations are much quicker, less invasive, and have a speedier recovery time. 

    What I can say to help you and him is remembering to use his voice. If he needs something repeated or re-explained, encourage him to ask for clarification. Boston really values the patient voice, so if HE needs something, all he has to do is ask!

    Please feel free to email me if you have any other questions!

    Jennifer Angelone
    Young Mended Hearts Coordinator
    The Mended Hearts Inc.
    Hudson MA