Posts Tagged ‘caring for special needs kids at home’

What to consider before discharge from the hospital?

Friday, July 13th, 2012

PHS understands what a whirlwind life becomes when preparing to leave the hospital with a medically-fragile child. We met with a few of our experts, PHS Medical Director, Dr. Roy Maynard and PHS family mom and Infusion nurse, Jill Wall, RN, BSN, CRNI as well as included input from the entire clinical team to compile a list of tips for families to consider when getting ready to leave the hospital. Once the process is in place for a patient to leave the hospital and they are stable and ready to go, things can move rather quickly. The tips below will help get you organized and ensure you have necessary information from the hospital staff before you leave, ensuring you won’t have to make extra phone calls to track down information later.

What to consider before leaving the hospital:

  • All contact info on one piece of paper. Ask the hospital for one single piece of paper that has the contact information for your primary care doctor and all the different specialists who will be following your child after discharge, and when to call them. The hospital may give you individual cards, but a single sheet with all relevant contact information is much handier.
  • Interview to find good a good fit. Interview both a DME company and nursing agency before making selections. Find a company you feel comfortable working with. If you know your child is chronically ill and will need long-term nursing care, be sure to ask the agency if they will stay with you over the long term.
  • Train family/friends that will care for the child. Encourage family members and friends to go through hospital training to provide suitable backup when needed. Better yet, identify KEY people who will be in the home consistently staying up-to-date on the care your child needs and how to administer each care.
  • Organize vaccinations. Make sure vaccinations are up-to-date before going home and ask for a copy of the schedule to keep in your personal records.
  • Learn about your coverage. Learn to work within insurance limits or find other payment options. At-home insurance coverage will be different than in the hospital and there will likely be extra expenses not covered by insurance. Contact your insurance provider before discharge for specifics about in-home care for your plan.
  • Learn as much as you can while in hospital. Build your confidence by spending as much time as possible, including overnights, with “care by parent” under hospital staff guidance at the hospital.
  • Get as much sleep as possible the night before discharge. Although we mention spending overnights at the hospital in the point above, try to go home early the night before discharge and get a FULL, restful night’s sleep. Your child is safe in the hospital for one night and you will need and appreciate that uninterrupted night after bringing your child home.
  • Adjust medication schedules to home schedule. If the doctor has not suggested it already, ask if medication/feeding schedules can be safely rearranged to simplify the workload at home (for example, could an infant on electrolyte supplementation go from 4x/day to 3x/day or 2x/day?). While still in the hospital ask to adjust the schedules to the way it will be done at home at least one week before discharge. This will give you and your child time to acclimate.
  • Have your home set up prior to discharge. PHS helps families with high-tech patients sort through equipment and supplies so that you don’t come home to boxes full of unfamiliar products.

And lastly, never feel alone. PHS and the hospital staff are always there to help you through the process of transitioning to home. You can see a full list of tips like the ones above here, where we cover tips for you after you’ve arrived at home, as well as tips to reduce stress and strain on you, and your family. Do you have any other tips or thoughts that you’d like to add to the list? We know the families who have already been through the process are the real experts and we’d love to hear from you!

PHS now sharing outcomes data

Sunday, April 8th, 2012

For quite some time PHS has been tracking “outcomes” data to continually improve our services and the care and safety of our patients in the home. Safety has always been and remains to be a top priority in the services we provide on a daily basis to some of the countries most medically-fragile children. PHS tracks data and outcomes to continually improve the quality of care. Outcomes has become common buzzword in today’s health care arena. The obvious goal for measuring outcomes is to improve the quality and delivery of health care at a lower cost. And with recent health care reform outcomes could direct patient referral patterns as well as reimbursement.

Measuring outcomes helps PHS:

  • Establish benchmarks and standards of safe, in-home health care
  • Determine if appropriate care is being provided by all caregivers
  • Identify areas for improvement
  • Document interventions and treatments that are most effective
  • Evaluate effectiveness of education and training tools
  • Provide patients and other patient caregivers a method to evaluate the quality of PHS’s in-home health care

Like I said before, we have been measuring outcomes data for quite some time, and in the Fall 2011 issue of The Pulse, we reported outcomes on central line blood stream infections (CLABSI) in homecare patients with central venous access serviced by PHS home infusion nurses. PHS reported infection rates significantly lower than hospital infection rates. What makes these low infection rates even more remarkable is the high acuity of these PHS patients.

Recently, we added a page devoted to patient outcomes on our updated PHS website. There, you will find information on the CLABSI results, as well as other outcomes related to respiratory therapy, private duty nursing and shipping accuracy.

On the respiratory side, we recently completed a 12-month observational study of our tracheostomy dependent patients. (You can read more about this study in a blog post here.) Tracheobronchitis is one of the most common medical conditions affecting pediatric patients with artificial airways and there’s a lot to be learned about it in the homecare setting. We are working to compile the results and look forward to sharing the results with you soon.

In the meantime, we encourage you to take a look at the new patient outcomes page on our website. Check back often, because we will continue to populate the page with additional statistics and studies as they become available.

1•2•3 Infection Free! IV Catheter Care Program

Friday, September 9th, 2011

We know that caring for a child with an IV in your home can be a daunting process. There’s always that fear of infection in the back of your mind. To help quell some of those fears PHS has created a program called 1•2•3 Infection Free!, the program walks you step-by-step through the process of keeping your child infection free each time you administer an infusion.

Watch the video below as PHS Infusion Nurse Susan Fitzsimmons, RN, CPN, BSN walks through the various components in the PHS 123 Infection Free Kit.

Infection is a risk every child with an IV catheter faces.

PHS created a new program to help you prevent dangerous IV catheter infections at home. The program
is called 1•2•3 Infection Free! and its materials explain:

  • Actions to take each and every time you or any caregiver works with your child’s IV catheter
  • Warning signs for infection at the IV catheter site or in the blood stream
  • Whom to contact if your child shows signs of infection

Materials included in the kit are:

  • Infection Prevention Methods Poster
    • An easy reminder of the most important steps for preventing an IV infection, with pictures on one side
      and more detailed information on the other side
  • My Child’s IV Catheter Care Log
    • A list of infection warning signs for which to check every day and a guide for whom to contact about
      different warning signs. Call us when you need more copies.
  • Emergency Information
    • A card to hang near your child’s bed or on the refrigerator with infection warning signs and the phone
      numbers of whom to contact
  • Badge
    • A list of infection warning signs and contacts that is a perfect size for purse, pocket, diaper bag or
      emergency kit

    Have you used 1•2•3 Infection Free! Does it help you to remember the steps and keep your child infection free? We’d love to hear your feedback on the program.

Hope is a powerful medicine

Friday, September 17th, 2010

Philanthropy has been part of the PHS culture since we opened our doors for business in 1990. Since formalizing our giving and volunteering by introducing the Sharing Care program, PHS has formed several valuable partnerships that serve as fantastic resources to our patients and their families.

PHS staff participating and volunteering at HopeKids Annual Suburban Adventure Fundraiser Walk/Run. For more information on the fundraiser and how you can help out visit their website @

Having a chronic illness not only impacts the child with the condition but also the entire family. HopeKids understands this challenge and strives to support these families with the message that hope can be the most powerful medicine of all. HopeKids events provides kids and parents with the opportunity to connect with others in similar situations. That invaluable connection helps families feel as though they’re not alone.

HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions free of charge for the whole family. With events such as go-cart racing, football clinics with the University of Minnesota Gopher football team, private movie screenings, twins games and not to mention their annual HopeDay festival that, this year, included a petting zoo, BMX biker shows, super heroes, basketball and kickball games, a dunk-tank and inflatable bouncers, there is no shortage of fun or hope for these children, their siblings and parents.

To learn more about the amazing mission of HopeKids watch this video: HopeKids. Restoring Hope. Transforming Lives.

Each spring PHS employees visit Faith’s Lodge to help clean up the grounds around the lodge and spring clean to prepare for new guests

Living with and caring for a medically-fragile child can be exhausting and dealing with the loss of a child is a heartbreaking experience that takes time, strength, support and hope to continue moving forward; for those times when you’re feeling your weakest, there is Faith’s Lodge. Faith’s Lodge provides a retreat where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future.

Faith’s Lodge offers families a place to reflect and regroup and hopefully leave with more hope and energy than when they arrived.  While at Faith’s Lodge families have the opportunity to spend time and connect with other parents who are in a similar situation, giving you a feeling of support and understanding.

Visit their website to learn more about the amenities and the process for applying to stay at Faith’s Lodge. With a suggested donation of only $25.00 per night, Faith’s Lodge is truly a resource to families when they are in need of a break, a getaway, support from someone who understands their situation or just some time to renew their spirit.

Coming up on September 25th is Hope Rocks, an annual event benefiting Faith’s Lodge. PHS is proud to support Faith’s Lodge as a sponsor for the second year. If you are interested in sponsoring or purchasing tickets to the event please visit the Hope Rocks website.

To learn more about how Faith’s Lodge impacts the lives of those who stay watch this video: Faith’s Lodge. A place where hope grows (warning, it’s a tear-jerker)

Have either of these organizations touched your lives? We’d love to hear your story or see photos from events you’ve attended.

Living in harmony with your kids’ special needs helpers at home

Wednesday, July 21st, 2010

When children with special medical needs come home from the hospital, they don’t come alone.

In addition to equipment and supplies, your kid’s special needs typically require the services of a variety of medical staff, including nurses who may be coming and going, or even in the home 24 hours a day, seven days a week.

That may take some getting used to.

Here are some tips from PHS staff and parents on how to live in harmony.

Communicate expectations
Make sure nurses understand what you expect of them. Decide on boundaries early on and keep communicating (things like where nurses should park their vehicles, can they use the refrigerator or should they bring lunch in a cooler, can they use kitchen appliances, or a separate bathroom). If something isn’t working, make changes so the family can maintain some level of privacy.

Take notes on kids special needs
Try using a “Communications Book.” You and the nurses write comments in the notebook throughout the day and are able to communicate through notes left in the book. As nurses change shifts, they read through the book to see how the child is doing that day or if anything has changed since they were last in the home. This keeps everybody on the same page.

Parents can also use the book to communicate an otherwise uncomfortable situation (for example, if one nurse is bad at cleaning up, the parent can write a note asking all nurses to please be better about cleaning up after themselves. That way, the parent doesn’t have to call out a specific person, but rather lets all nurses know they need to be careful and conscientious when they are in someone else’s home).

Make a list
Give the nurses a list of “need to know” situations, such if you wished to be awakened for fever or other signs or symptoms of an impending illness during the night or when to be called during the day.

Don’t let things fester
Address any concerns before they jeopardize your relationship. This is where a communications book comes in very handy, but if you are uncomfortable directly or indirectly confronting a nurse over a certain issue, talk to her/his supervisor.

Understand that personalities may clash. You may be able to overlook that, but if there is a nurse in your home you know will not work with your family, ask the nursing agency for a replacement.

Help the nurses help you
Don’t expect the nurses to know everything about your child. You are the expert; orient them as much as you can and let them be helpful to you.

How do you cope?
How does your family deal with having extra people in your home? Can you share any tips on how to maintain privacy and normalcy?

We’d love to hear from you.