Mended Little Hearts Open Forum

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  • 1.  COVID precautions

    Posted 06-25-2020 20:47
    Hello! I cant believe it took me so long to utilize this resource! I have a 13yo kiddo HRHS, post Fontan. They have been stable with only aspirin therapy for much of their life since the fontan, and while they struggle with some emotional/developmental issues, present pretty much as a healthy "normal" kid. 

    I am struggling daily to figure out what the right thing to do is during this pandemic. Im either being overly paranoid or not strict enough, depending on who you ask. My head is caving in.  How much interaction and potential transmission is safe? Is it ok that Im going back to work in a bakery where 6 feet of distance is not always possible, where my coworkers are serving the public through a window? Should I put my kiddo on an airplane for regular summer parental visitation because its "not fair"? 

    I would love to know how others are coping with reopening, especially those who are younger.. in one risk group, but not another. How do you determine what is acceptable risk? 

    Eugene OR

  • 2.  RE: COVID precautions

    Posted 07-28-2020 00:52

    Hello Lorissa,
    I'm up late cuz I can't sleep-my head too is 'caving in'. I have a 10yo son with ASD, one year post open heart surgery w new valve and doing well, also on aspirin therapy only. He also has anxiety and ADHD-meds for that too.

    Options. School is offering 100% remote option, or 2d in class with 3d remote. My husband and I work full time. And the spring remote learning wiped us out (other 12yo son has severe dyslexia). Each school option has its pros and cons. The toughest thing is no 'right' decision.

    preparation. We've taken small trips here and there, taking precautions and working on helping him get use to the 'new normal.'  We've also purchased our share of masks to make sure he feels comfortable wearing them.

    I'm good with being out and about with him, but I have the same feeling I had putting my oldest on the school bus for the first day of school-Is he ready? Will he be safe? What if he is exposed, will he survive or recover? Urgh!

    One thing is for sure, there is no magic answer. It's personal, raw, and okay no matter what we decide!

    Hang in there mama! 

    Medway MA

  • 3.  RE: COVID precautions

    Posted 07-29-2020 12:44

    There really are no great answers for parents of kids with CHD. It is very rare that children have severe illness, but they can spread it.


    Jodi Smith, Esq.

    Program Director

    Mended Hearts & Mended Little Hearts





  • 4.  RE: COVID precautions

    Posted 07-30-2020 10:43
    Hi Lorrisa. I have ASD and OHS repair 2 years ago and I work in the schools. My personal experience is 1. I have been healthy as an ox since recovery. I hope you can start to feel how healthy your child is actually now that he's recovering. Not sure if it's the same for children as adults but I'm personally not as worried about it because I am stronger than I was before.....not even a sniffle. I think you're not only carrying your stress but your child's stress too. Take a deep breath and let him help you lead the way. The new normal for him is a good normal as far as I can tell. If he's happy you should be to. If he's not hurting you shouldn't be either. Take care and God Bless.

    [Carrie] [Kashani]
    [White Bear Lake [MN]

  • 5.  RE: COVID precautions

    Posted 07-31-2020 11:14

    Thank you for the thoughtful responses. Sara, I appreciated your raw real-ness.. parenting, especially now, especially with our kids.. its messy and it IS a constant battle of choosing the lesser evil, which feels like crap. Ive started conversations with my kiddo about taking necessary and controlled risks. Way back at the beginning I thought, if we just knuckle down and stay home, this can pass. But it is proving to be much less straightforward than that, and much longer lasting, and their while health (emotional, social, physical) has to be considered. So, we're taking small steps back into "the world", masked up and washing hands, controlling the risk when we can, embracing the ideas of harm reduction and accepting the things we cannot control. 

    I am not sure yet what will be our best path forward with regard to school. Our school district is going to start online and then plans to move to move to alternating weeks of in-person classes, with the option of attending 100% online. We'll probably continue to take it one step, one decision at a time.

    Broad statements like, "kids don't get sick," I think are dangerous and mis-informed, and gloss over the kids like ours, that may be less likely to contract the virus, but are more likely to experience severe illness if they do. I feel like all the kids with special needs and differing risk factors have been marginalized, and forgotten about. So Im definitely being a bit loud, trying remind everyone I talk to about the subject, asking why we aren't hearing about what supports will be in place for kids with IEPs and 504 plans? What efforts will be made to protect the kids that ARE in a risk group? Why does it feel like the choice lies with the parents, with little concrete advice, and if those parents are working class, there is no framework for those families to still eat and pay for shelter while offering the supports and safety themselves? You can't dismiss us, who have seen doctor's cry because they don't know if our kid is gonna make it, who walk into an appointment to hear, "Well, your kid's doing excellent, but they could experience sudden death at any time, you need to know that." You can't erase that from my psyche and tell me not to worry, kids don't get sick. Not a decade later, not four decades later.

    I think the most maddening thing, is not really having a single trusted source for information. Everyday, there's a new speculation, a new study, contradicting advice. Im reading it all. Since writing the first post here, my kiddo's cardiologist directed me to ACHA (Adult Congenital Heart Association).. my kiddo is a teen, so the advice is relevant, and focused on people who are, like them, in one risk group but maybe not another. I highly recommend giving them a read :)

    Thank you again for the support and sense of community that comes with having a conversation like this one. The point is not that we should all be on exactly the same page, but that we share those differing perspectives and broaden each other's understanding, and feel heard. I appreciate it deeply.

    With love and heart-hugs

    Eugene OR