Posts Tagged ‘support for families with sick kids’

How we Ensure Homecare Patients Have a Voice at the Capitol

Friday, January 18th, 2013

William J Amberg, MA, JDOur main goal at PHS is to keep kids safe at home. In order for this to happen we have to ensure that medically-complex homecare patients are kept in mind as policies and laws change at the capitol. Not only are the cost savings immense when looking at homecare vs hospital based care, but our patients progress and heal best at home, with their families, pets, and friends, where they are most comfortable.

One way PHS ensures this top of mind thought with our representatives is by lobbying for pediatric homecare.  To help us strengthen our voice on Capitol Hill, we are excited to welcome William Amberg, MA, JD, to the PHS team. Coming to us from Ewald Consulting, where he served as a government relations attorney and public relations consultant the past six years, Amberg brings an immense amount of political knowledge and passion for our industry.  He will serve as liaison for local government, state congressional and executive branch relations in his new position with PHS, and we’re thrilled to have him.
“After three years of independently representing Pediatric Home Service with Ewald, I couldn’t be more eager to join the team full time,” says Amberg. “I look forward to dedicating my time to representing the interests of our patients, our patients’ families and our Pediatric Home Service family.”
Kids heal best at home, and PHS will always work to ensure your children have the chance to thrive at home by ensuring your voice is heard with our state governments.

Thanksgiving Meal Assistance Programs 2012

Friday, November 9th, 2012

We’re coming up on an especially needy time of year for many families, yet many metro Minnesota area organizations, churches, and food shelves ensure that every family can give thanks over a traditional Thanksgiving meal.

PHS Medical Social Worker, Monica Handlos has compiled a larger list than ever before. Look through the options below, and if you have further questions or our resources don’t cover your area, Monica recommends contacting the United Way First Call for Help at 651-291-0211. Ask them for agencies or food shelves that are helping with Thanksgiving Meals or Baskets.  They will ask for your zip code and give you a list of local agencies that might be able to help you out.

Holiday Meals:

  1. Kierans Irish Pub
    601 North 1st Avenue Minneapolis, MN 55403
    Free Thanksgiving meal call for reservation. Free clothing closet also available on Thanksgiving day.
  2. Cherokee Tavern
    886 Smith Ave S, West St. Paul, MN 55118
    Free Thanksgiving meal served. Meals available for pick-up as well.
    For tickets please call Neighbors, Inc 651.455.1508 before November 16th.
  3. Bierstube
    2670 E County Rd E, White Bear Lake, MN 55110 or 7121 10th St Oakdale, MN 55128.
    Free Thanksgiving meal provided to anyone in need.
  4. Pepitos Mexican Restaurant
    4820 Chicago Ave, Minneapolis, MN 55417
    Free Thanksgiving meal provided beginning at 10am- 3pm.
  5. Gethsemane Lutheran Church
    715 Minnetonka Mills Rd, Hopkins, MN 55343
    Free Thanksgiving meal beginning at 1pm in Gethsemane Lutheran Fellowship Hall.  Please make a reservation by November 23rd.
  6. Faith Lutheran Church of Coon Rapids
    11115 Hanson Blvd, NW, Coon Rapids, MN 55433
    Free Thanksgiving Meal.  Serves Anoka County.  Please call church for details.
  7. Marie Sandvik Center
    1112 E Franklin Ave. Minneapolis, MN 55404
    Free Thanksgiving Meal.  Serves city of Minneapolis. Call for more details.
  8. Sharing and Caring Hands
    525 N 7th St. Minneapolis, MN 55405
    Free Thanksgiving Meal 10 am-12 pm.  Serves Anoka, Carver, Dakota, Hennepin, Ramsey, Scott and Washington Counties. Call for more details.
  9. Union Gospel Mission
    435 University Ave E. St. Paul, MN 55103
    Free Thanksgiving Meal.  Serves low income families, no reservations needed. Call for more details.
  10. Thanksgiving Meals on Wheels (no affiliation with Meals on Wheels)
    They deliver Thanksgiving meals to families living within 45 miles of St. Paul.  Call between 8:30-4pm to set up a delivery.  They will need your address, zip code, and number of people who will be eating on Thanksgiving.  Meals will be delivered between 8-11am on Thanksgiving and someone needs to be at home in order to sign for the delivery.  The meal includes a roasted turkey and dressing (already cooked) along with raw potatoes, canned vegetables, canned cranberries, rolls, butter, milk, and pie for dessert.

Food Baskets:

  1. Christian Cupboard
    7380 Afton Road, Woodbury, MN 55125
    Need to register in person on before November 15. Bring id and proof of address such as a current utility bill.  Children will also need a proof of ID such as a medical or social security card.
    Area served includes, Woodbury, Maplewood south of I-94, Landfall, Oakdale.
  2. Volunteers Enlisted to Assist People (VEAP)
    Food certificate or bag of groceries for those in need.
    Bring photo ID, proof of address such as a current utility bill.  Children will also need a proof of ID such as a medical or social security card.
    Area served includes, Bloomington, Edina, Richfield, and South Minneapolis.
  3. North Suburban Emergency Assistance Response (NEAR)
    4803 Welcome Ave N, Crystal, MN 55429
    Thanksgiving Baskets available to NEAR clients. To register for the NEAR program call Tuesday or Thursday after 9 am and speak with Phyllis.
    Service area: New Hope, Crystal, Robbinsdale between 42nd Ave N and 62nd Ave N.

Music, fun and more, all in the name of kids

Friday, October 5th, 2012

Hope Rocks: The Anti-Gala

PHS volunteers had a blast last Friday, September 28  at Aria at the Jeune Lune celebrating Faith’s Lodge. The event marked the 5th year of rocking out for a good cause. With performances by Eric Hutchinson and Martin Zeller, guests enjoyed food from Crave, henna tattoos and rockin’ hair do’s from the stylists at Simonson’s.

Faith’s Lodge  provides a place where parents and families facing the serious illness or loss of a child can retreat to reflect on the past, renew strength for the present and build hope for the future.

phs, pediatric home service, sharing care, volunteer, faith's lodge, hope rocks 5, eric hutchinson, martin zeller,

The PHS volunteers enjoying the night raising money and rocking out to Eric Hutchinson and Martin Zeller.

Children’s Lighthouse Music Festival

Another great event from last weekend was the Children’s Music Festival put on by Children’s Lighthouse of MN, an organization raising money to build the first children’s hospice home in Minnesota.

Families had fun at this free event taking pictures in the photo booth, getting full face painting, crazy hair do’s and playing with different musical instruments from around the globe. In addition to the fun stations the entertainment couldn’t be beat, Beachcomber Bob, a performance from Circus Manduhai, muscial group Bazillions and Okee Dokee Brothers.

phs, pediatric home service, children's lighthouse of mn, sharing care, homecare, thrive

phs, pediatric home service, childrens lighthouse of MN, hospice, homecare, thrive, sharing care

Navigate the MN State Fair with Medically-Fragile Children

Tuesday, August 28th, 2012

Sweet Martha’s cookies. All-you-can-drink milk. Everything to eat on a stick. Farm animals of all ages, shapes and sizes. Who doesn’t love the fair?

The great Minnesota get-together, the Minnesota State Fair, runs August 23 – September 3 this year. Planning to spend a day there can be daunting for any family, especially with a medically-fragile child who has special needs.

Pediatric Home Service wants to ensure your day at the fair goes as smoothly as possible. So we’ve compiled a list of helpful things to know for a family with a medically-fragile child. We want this to be a day you’ll treasure. To focus on the fun of the day, do as much as you can before you get in the gates with these preparation tips:

1. Study up on accessibility

The Fair has parking, drop-off and pick-up and other arrangements for visitors with special needs. The Fair’s accessibility guide is here, where you’ll find information on:

  • Wheelchairs to rent
  • Wheelchair recharging stations
  • Midway and Kidway ride guidance
  • Special entrances and seating for entertainment
  • ASL interpreter lineup

2. Know where to find the first aid buildings

The Fair has two medical aid stations to provide first aid. For serious illness of injuries call the police at 651-642-2280.

  • Medical Aid West: 8a.m. to 12:30a.m. 1834 Dan Patch Ave., across from Heritage Square
  • Medical Aid East: 8a.m. to 9p.m. 1424 Cosgrove St., north side of the 4-H Building

3. Get an ID bracelet

Make your first stop (even before a pronto pup!) one of these locations for a free ID Bracelet:

  • Care & Assistance Center
  • Guest Services Office in the Visitors Plaza
  • Any information booth

Use the Fairgrounds map to help you find your way.

Your child’s bracelet will have his or her name, pertinent medical information and your contact info for the day. The information is stored inside the bracelet on the child’s arm and can only be accessed by cutting bracelet off arm, so you don’t have to worry about your child tampering with it.

4. Learn from other parents

The Education building is full of freebies from coloring pages to stickers and school supplies—plus a reusable bag to stash it all in.

This brave mom took her four kids to the MN State Fair and lived to blog about it. For instance, she found the best unisex/handicapped accessible restroom is in Eco Experience. Read all her tips.

Other moms offer advice on how to do the fair on a budget. Their tips can be found at

5. Take photos and share the stories of your day with PHS

What’s your can’t miss stop at the MN State Fair? What works for you and your family? We’d love to see pictures from your fun day out and about. Share your pictures on the PHS facebook wall and tell us your favorite part of the day.

Do you have tips, based on your fair visits and other travels? Any places that have been especially accommodating?

We’d love to hear from you.

Sharing Care helps out at the Coleberry Golf Tournament for HopeKids MN

Friday, August 17th, 2012

PHS employees are pretty lucky to work for an organization that puts such importance on giving back and volunteering time. We get fantastic opportunities to be out in the community supporting like-minded organizations that support medically-fragile kids and their families. This week, Sharing Care volunteers had a great time helping out at the Coleberry Golf Tournament benefiting HopeKids MN! We spent the morning helping out with the kids golf clinic on the driving range and the putting green. In the evening we had fun driving the golf carts around the course taking down tents once the tournament was over. But a word to the wise, watch out for the poles when taking down tents, PHS volunteer, Bruce, will tell you that they don’t feel too good on your head. You can check out all of the pictures on the PHS Facebook page.

HopeKids MN is an organization that provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.  Have you heard of HopeKids? Do your kids participate in their events? If so, what has your favorite been? We’d love to hear from you.

The education continues long after the 16th annual SMA Conference

Friday, July 27th, 2012

Wednesday June 20- Saturday June 23 were dedicated to all things SMA. The Twin Cities were lucky to be the hosts of the 2012 National Spinal Muscular Atrophy Conference. With over 1,100 attendees the conference was a great success and was  jam packed with fun and learning, PHS was excited to be there every step of the way.

SMA, spinal muscular atrophy, bloomington mn, national conference, families of sma, type I type II type III

PHS Respiratory Therapist, Carrie, shows conference attendee’s an electronic percussor

There were many sessions, events and activities keeping attended busy over the 4 day conference, including:

  • 40 Vendors, a record number for the conference. PHS was happy to participate as a vendor discussing services, technology, equipment and cares for SMA patients.
  • The first ever SMA Family and Research Dance Party! (The kids sure were exhausted the next day)
  • 38 workshop sessions for SMA families and professionals.
  • The Meet-N-Greet where families connected with one another at the very start of the conference.
  • A Family Fun Fest with over 30 carnival games for all of the children.
  • Over 200 SMA Researchers who attended the 16th Annual SMA Research Meeting, joined in the Researcher Relay Race where SMA Researchers raced in manual wheelchairs with some of the children.
  • The Children’s Program, which allowed parents to attend workshop session and where over 250 children enjoyed activities, movies, games and craft projects.
  • A Researcher Q and A session for parents to hear about the most up to date research news.

Believe it or not, the weekend was not only about fun. There was a lot of learning that took place as well. We recently received the link to all of the presentations that have been posted online thus far from the conference. So, if you weren’t able to attend, or if there was one workshop you couldn’t make it to, now is your chance to watch what you missed. Click here to be taken to the Families of SMA website where PDFs, PowerPoint presentations and videos of the sessions have been posted.

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.

John’s Troubleshooting Tip of the Month: Food Pump Series- Part 4 Common Alarms

Monday, February 13th, 2012

PHS understands how stressful it can be when a piece of equipment isn’t working properly, and we want to help resolve any issues as soon as possible for you. So, once a month, PHS Respiratory Therapist, John Sheahan posts a tip on how to troubleshoot a common error with a piece of equipment.

This month we will finish up on the most common alarms you may receive when using the Infinity Teal and Infinity Orange food pump.

  • Alarm Message: Push Run to Feed
    • Problem: Food Pump paused for more than 2 minutes.
    • What to do:
      • 1. To start feeding: press RUN/PAUSE keypad button two times or
      • 2. To turn Food Pump OFF, hold ON/OFF keypad button
  • Alarm Message: Shut Door
    • Problem: Door is open
    • What to do:
      • 1. Push in latch and close Food Pump door completely.
      • 2. Call PHS at 651-642-1825 if latch is broken see earlier Troubleshooting Tip here.
  • Alarm Message: ER01-ER99 or ERRA-ERRZ
    • Problem: Many factors can cause this alarm message.
    • What to do:
      • 1. Hold ON/OFF keypad button until Food Pump turns OFF.
      • 2. Hold ON/OFF keypad button until Food Pump turns ON.
      • 3. Call PHS if same message reappears in display window.
  • If the volume delivered by the Food Pump in NOT the same as the dose set
    • Reasons: Formula or Breast Milk was NOT correctly measured before placed in feeding bag, or a small amount (12.5 mL) of Formula or Breast Milk in Feeding Bag Tubing is not delivered to child.
    • What to do:
      • 1. Make sure Formula or Breast Milk is correctly measured before placing in Feeding Bag.
      • 2. Be sure to add an extra 30 mL of Formula or Breast Milk into Feeding Bag at the beginning of each feeding.
      • 3. Call PHS in problem continues.

John Sheahan, RRT-NPS, LRTJohn Sheahan, RRT-NPS, LRT is a Licensed Respiratory Therapist at PHS and would love to hear from you if you have a tip that you’ve found helps when working with your equipment, or have an idea for a Troubleshooting Tip post. Share your tip or idea through a comment here or an email to John at

PHS celebrates Feeding Tube Awareness Week, February 5-11

Monday, February 6th, 2012

tube feeding awareness, infusion, feeding pump, infinity teal, infinity orange, g tube, jtube, formulaTube feeding’ is a term that at times may cast a negative light upon an already complex medical situation.  However, what is not commonly known are the benefits a tube feeding can provide a growing child.  By providing nutrition through the use of a feeding tube, a child that may not be able to obtain adequate or any nutrition by mouth would still be able to grow, thrive, and develop.

PHS is excited to be celebrating this awareness week and wanted to share with you some resources that our Dietitians pulled together. The links below have information for adults and kids alike. Do you know of any other resources? We’d love for you to leave us a comment here to keep growing our list of resources.

Resources & Fun Sites for Families:

Happy One Year to our PDNS department

Friday, February 3rd, 2012

Just over one year ago PHS launched our newest service, Private Duty Nursing (PDNS). We are excited to look back over the past year at all that has taken place since bringing our first PDNS patient home on January 18th, 2011. Allowing children the opportunity to thrive at home with their family while still receiving the highest quality and safest healthcare available to them is what makes us tick. Adding private duty nursing to our services has allowed PHS to complete the circle of homecare services for any medically-fragile, technology dependent child and their family.

One phone call can take care of so much. A parent can place a supply order, check on the last lab draw results, troubleshoot any concern with equipment or supplies and schedule the next IV nurse visit, all in one call. The same is true for the healthcare professionals that we partner with daily. One phone call to PHS and we will coordinate all services needed to get a child out of the hospital and to the comfort of their home. Including training the family and any caregivers on all equipment. All the while staying in constant communication with the physician to ensure the everyone always has the latest information.

Here are a few fun facts about the first year of Private Duty Nursing at PHS:

  • Number of field nurse assessments (PDNS Shift and PDNS Seizure)? 9,070!!
  • Number of Patients that have been on PDNS service? 37
  • Number of current field nurses? 110
  • Geographically; where is our furthest patient located? Brainerd
  • How many homes have 2 or more patients in the same home? 2

The picture shows our amazing internal PDNS staff that keep the ship moving, and although they are not pictured, the incredible 110 field nurses round out the PDNS department.  It truly takes a team to take care of the child and we happen to think we’ve come up with a winning team.

We want to take a moment to thank each family that has invited PHS staff into your home and allowed us the opportunity to care for your child. Each one is a blessing and we love partnering with you to keep your children safe, happy and healthy at home- just where they belong.