What do parents of medically-fragile kids have to consider?

The answer to that question is… EVERYTHING.

The reality that faces many parents of medically-fragile, technology-dependent children is one that is little known by the general public. On this week’s Mom Enough webcast PHS Medical Director, Dr. Roy Maynard shed’s light on the challenges and considerations these parents and their families face before and after discharge from the hospital.

Some of the “things to consider” that Dr. Maynard touches on throughout the interview are:

Pediatric home service, phs, thrive, taking care of the child, Mom Enough, webcast, Roy Maynard, neonatology, pulmonology, medically-fragile, technology-dependent

Dr. Maynard with Marti and Erin Erickson in the studio

  • Do you and your family have the capability to provide the level of care that your child needs at home?
  • Are you going to be willing to go through all of the training to understand the your child’s illness, the different pieces of equipment, how they work and how to troubleshoot?
  • Do you have trained family resources or community resources that can help you out in emergency situation if your in-home nursing misses a shift?
  • How will your medically-fragile child affect your relationship with your other children? How do you find balance between you healthy and medically-fragile children?
  • How will this impact finances? A lot of these children exhaust their private healthcare very quickly. The PHS Medical Social Work is a great resource for our families who need financial assistance.
  • Your child’s stability- no child can go home from the hospital unless they are stable.
  • Your house must have air and heat, a ventilated child will not tolerate overheating. Air conditioning is a luxury to many people, you need to be sure the environment you bring your child into is safe for their cares.
  • Does your house have the proper electrical set-up for the equipment your child will be coming home with? Will you need to ground any outlets, or rewire to ensure consistent power?
  • Many families have backup generators in the house in the event of an outage, will you need to get one of those?
  • Your power company needs to be aware that you have a technology dependent child in the home, and in the event of an outage that your home needs to be made a priority.
  • Are you comfortable with the idea of nurses in your home up to 24 hours a day 7 days a week?

These are only a few of the many, many considerations and challenges that face families bringing home a medically-fragile child from the hospital but it gives those out there without any exposure to this world, an idea of the world of homecare can be like. You can learn more about homecare on the Pediatric Home Service website, facebook page, or by listening to the full webcast.

One extremely important piece to remember in this situation is that families in these situations are never alone. PHS is here to help navigate the tricky healthcare waters. We provide services to keep children home, safe and thriving all while keeping families together. PHS has put together a list of things to consider before discharge to help families through the process to ensure they have covered as many of the bases as possible before going home.

Are you the parent of a technology-dependent, medically-fragile child? Does this sound familiar to you? What were some of your best resources when you first went home? What were some of the unexpected challenges?

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  • Armon

    My son requires cares 24/7. We have authorization and funding for in home nursing care, but no nursing available. We are not alone. No Respite available either. We are pretty much treading water on our own.

    • PHS

      Armon, What a hard situation. Why is there no nursing available? Are there other companies you can look into? How long have you been home? Hopefully your homecare company is working to find nurses to care for your son. I’m so sorry you’ve been left to feel like you’re left on your own in the meantime.

    • https://www.pediatrichomeservice.com Pediatric Home Service

      Armon, What a hard situation. Why is there no nursing available? Are
      there other companies you can look into? How long have you been home?
      Hopefully your homecare company is working to find nurses to care for
      your son. I’m so sorry you’ve been left to feel like you’re left on your
      own in the meantime.