Camo1983
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Camo1983, October 16,  2020  6:43pm EST

New

Hello I'm new here. I'm looking for support. I had twins last December at 33 weeks. I had a boy and a girl. My son is over all healthy except for a thyroid problem. My daughter has multiple heart problems and has had multiple surgeries and is still sick and in the PICU. She has DORV, mitro valve stenosis, ventricular septal defect, bronchomalacia, mystery fevers and now has pnamonia. She has recently been seen at Boston children's hospital and had her mitro valve replaced with a Melody valve. She has also had several surgeries were we live with the hospital admitting that they couldn't help with her CHD and messing up on a few of her surgeries. Since covid it's hard to go and see her because I'm a single mom taking care of her twin brother and our car just broke down. Our family thinks that I'm a burden to them pretty much and refuses to help us with rides or anything else. I'm at my wit's end trying to do everything on my own.

 

1 Reply
  • AHAASAKatie
    AHAASAKatie, October 19,  2020  9:48am EST

    Good morning, I can not imagine what you are experiencing at this time and want you to know you are supported. I also have a few resources that might with the financial side of things.

    I wanted to suggest that you check out the Patient Advocate Foundation (PAF) at www.patientadvocate.org  The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability.

    Another option is to contact the Patient Advocacy Network (PAN) at www.panfoundation.org  for assistance.

    And, United Way’s 211 program is a free, confidential referral and information helpline and website that connects people of all ages and from all communities to the essential health and human services they need, 24 hours a day, seven days a week. You can get more information at www.211.org .

    Please know that you are not alone. 

    Best Katie

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