Posts Tagged ‘help for parents caring for seriously ill kids’

Caring for Your Food Pump at Home

Friday, June 3rd, 2011

Food pump cleaning instructions

Your child’s food pump alarm is going off. Again. What do the alarms mean, and how can you most efficiently keep food pumps clean and operating smoothly?

Infusion Nursing Coordinator Gail Fields, RN, takes you through basic cleaning steps, helpful tips, recognizing pump alarms, and how to turn down the alarm volume on your child’s food pump. We only advise making the alarm quieter for little ones who startle easily.

Food pump door replacement, battery info

Gail also shows you how to replace the door on your child’s food pump and explains details of the food pump battery, including how long it should hold a charge, troubleshooting tips, and charging cable options.

Remember, PHS clinicians are available 24 hours a day/7 days a week to help with your child’s food pump: 651-642-1825.

How do you clean and maintain your food pump? Any tips to share? We welcome your input.

Step-by-step Farrell Valve bag instructions

Friday, May 20th, 2011

Your child needs nutrition and good calories through his or her enteral feedings—not excess air bubbles. A key part of a feeding system is a Farrell Valve bag, which removes excess bubbles for more reliable feedings. Your child has less bloating and is more comfortable during and after feedings.

Watch PHS Dietitian Janelle Peterson show how to set up, use, clean, and store a Farrell Valve bag:

Of course if you have any questions about any aspect of your child’s feeding system, contact any PHS clinician.

Do you use a Farrell Valve bag in your system? Any tips to share? We welcome your input.

Supporting local children’s hospitals

Friday, May 13th, 2011

Remember the place where you met someone very special for the very first time?

PHS does.

We first meet most of our children while they are patients in local children’s hospitals. It’s always the start of a very special bond with these kids and their families.

So we’re proud to “Adopt A Room” at the new University of Minnesota Amplatz Children’s Hospital and to “Fill a Room with Care” at Children’s Hospitals and Clinics of Minnesota.  PHS made these sponsorships through the Sharing Care program. Local hospitals like these are a good fit because they are involved in basic science and research aimed to improve treatment and care for critically ill children. We share the same mission, which is to make a difference in the lives of sick children and their families, whether it’s at home or during a hospital stay.

Amplatz Childrens hospital, adopt a room, pediatric home service, phs, sharing care

Susan Wingert, President and Mark Hamman, Vice President in the PHS sponsored room at The University of Minnesota Amplatz Children's Hospital

The actual rooms at both hospitals are designed with technology, equipment, and spacious layouts to uniquely care for children while they are in the hospital. The private rooms are built to enhance the healing process, reduce stress levels, minimize exposure to infections and keep families connected while a child is in the hospital.

Rooms at both hospitals feature smart room technology so young patients control the room’s lights, TVs, communication and video-conferencing, allowing them to stay connected with their school, relatives, and friends.

It’s an ideal environment to help kids heal to the point where they can go home, which is, of course, the most special place of all.

Has your child experienced hospital stays? What features most helped him or her—and your family? We’d love to hear about it.

Hats off to some very precious people

Friday, May 6th, 2011

Quick, who makes your home safe and comfortable and is always there with good advice and calm, steady care?

Mom? You’re partly right. As Mother’s Day approaches, PHS is also celebrating National Nurses Week, May 6 – 12 this year.

All this week, PHS is honoring our team of home health care nurses. We’re proud they keep our kids and families safe and comfortable at home. We do our best to ensure they have the latest training, skills, equipment, and supplies to guide parents and other caregivers in taking care of each child. They do their best to also fit in to our families schedules.

According to the American Nurses Association (ANA), nursing is often described as an art and a science, a profession that embraces dedicated people with varied interests and strengths. Nurses have many roles, and serve all of them with passion for the profession and with a strong commitment to patient safety.

PHS couldn’t agree more.

ANA also reminds us that National Nurses Week was selected to run through May 12 because it’s the birthday of Florence Nightingale.

So Happy Nurses Week to our precious PHS nurses, including these infusion therapy and clinical specialist nurses pictured below. Missing in this photo collage are the newest members of our PHS family, and that’s our Private Duty Nurses. We can’t leave them out of this very special celebration and wanted to thank them for all they do in taking care of the child!

PHS nurses are the best in town!

“Being a nurse isn’t about grades. It’s about being who we are. No book can teach you how to cry with a patient. No book can teach you how to tell a family member that their parents have died or are dying. No professors can teach you how to find dignity in giving someone a bed bath. A nurse is Not about the pills, the IVs, and the charting. It’s about being able to LOVE people when they are at their WEAKEST moments and being able to forgive them for all their wrongs and make a difference in their lives today. No one can make you a nurse…YOU JUST ARE.” ~Anonymous

And Happy Mother’s Day to our very precious moms. We appreciate you!

How to unclog feeding tubes with Clog Zapper

Thursday, April 28th, 2011

If your child uses a feeding tube, you know it helps conveniently provide necessary nutrition and sometimes medications. But not when it’s clogged. Clogged feeding tubes interrupt important feedings and can cause frustration and discomfort. To keep lines clear, PHS and many of our families use the Clog Zapper .

Clog Zapper is convenient and easy to use.  In this video, PHS Dietician Janelle Peterson, RD, LD, CNSD, takes you step-by-step through using the product to keep your child on track and avoid replacing feeding tubes.

Thanks, Janelle!

Find other helpful video on the PHS YouTube channel.

Have you used Clog Zapper or other tube clog production? Any tips to share? We’d love to hear about it.

Facebook use benefits PHS and our families.

Friday, April 22nd, 2011

PHS facebook, pediatric home service, facebook fan page, like usAlways looking to inspire and inform our families, PHS also uses Facebook. The PHS Facebook page allows PHS to interact with patients, families, physicians, and community organizations.

PHS carefully monitors its Facebook page, so it’s a great place to ask a question or leave a comment. PHS also updates the Facebook page at least once a day with news, events, and inspirational status updates related to PHS kids and families. Recent posts include:

Of all social media right now, Facebook is the most widely used tool, and fits PHS families as an effective way to communicate. Check out this Facebook information:

  • More than 500 million active users
  • Average user connected to 80 community pages, groups, and events
  • More than 200 million people actively using it on their mobile devices

Please ‘like’ PHS on Facebook.

Have you checked out our Facebook page? Posted comments? We’d love to hear about it here or on our Facebook page.

Four steps to safer car seat and seat belt use for kids

Friday, April 15th, 2011

Protect your kids in the car with proper car seat and seat belt use. From quick grocery store jaunts to family road trip vacations, here’s the latest on new laws and guidelines to keep kids safe in your vehicles.

1. Use the right car seat the right way: It’s the law in every state because it’s the best way to reduce the risk of injuries. Several state agencies offer free clinics to check and properly install car seats of all types.

Find a car seat inspection clinic near you.

General car seat and seat belt use guidelines by stage:

  • Newborn to at least age 2
    • Seat: Rear-facing or a convertible seat
    • This is a new guideline from the American Academy of Pediatrics. Place the seat in the reclined position. Keep the belt snug, at or below your baby’s shoulders. Never put this seat in front of an airbag.
  • Ages 2 – 4
    • Seat: Forward-facing with harness
    • Place this seat facing forward and upright. Move the straps to the slots. Keep the belt snug at or above your child’s shoulders.
  • Ages 4 – 8 and shorter than 4’ 9”
    • Seat: Fastened into child safety seat or booster seat
    • Keep kids in a booster seat based on their height, not age
    • When your child outgrows a combination seat, go to a booster seat, used wit the lap and shoulder seat belt. If your vehicle only has lap belts, use a tethered harness or install shoulder seat belts.
  • Age 8+ or 4’ 9” or taller (whichever comes first)
    • Seat belt only
    • Kids are ready for seat belts only when they can sit with their back against the seat, knees bent (not slouching) and feet on the floor.
  • Medically-fragile kids
    • Some children may need harness adjusters, padding or other adaptation to properly fit in their car seat, booster or seat belt. Ask your PHS caregiver about options to fit your passengers.

2. Buckle up every time: Minnesota’s seat belt law is a primary offense. That means the driver and every single passenger must be in a seat belt or the proper car seat. The tickets are $25 – $100+, but your safety is more important.

3. Until age 13, kids sit in the back seat: They won’t like it, but it’s safer.

4. Buckle up yourself: Keep yourself safe for your kids, and set the right example for all your passengers.

See Minnesota’s full seat belt and car seat information.

Listen to the guidelines for choosing a safety seat.

Sharing Care at Faith’s Lodge

Friday, April 8th, 2011

PHS doesn’t just take care of children and families. We also proudly help care for a very special place where families can grieve and build hope. It’s Faith’s Lodge, a very special retreat center for parents and families who face a child’s serious illness or death.

Just a few weeks ago, PHS Sharing Care volunteers spent a day at Faith’s Lodge in Danbury, Wisconsin. We share our time each year, and this year, we helped with spring cleaning, inside and out, and prepared and froze healthy meals.

Watch PHS cook, clean, and chop down trees

As spring dawns, PHS is thankful for our partnership with Faith’s Lodge, where our patients and families can also renew their spirits alongside people who empathize with their experiences. Thanks for renewing us, too!

See Faith’s Lodge Sharing Care photos on our Facebook page.

More about PHS Sharing Care.

Summer camps for medically-fragile kids

Friday, March 18th, 2011

Fresh air, new friends, crafts, and of course campfire skits: Even medically-fragile kids can be happy campers at summer camps designed for their specific needs.

PHS encourages families to consider summer camp for their kids. Counselors, staff members, cooks, guides, therapists, and 24-hour on-call health care professionals bring unique training, expertise, and enthusiasm for working with medically-fragile kids. Most of all, kids learn they’re not at all alone. And who can resist learning new camp songs?!

Check out this information about summer camps for medically-fragile kids in the Twin Cities and surrounding areas.

If you don’t see a camp that fits the need of you or your child and you are a PHS patient, please contact Social Worker Monica Handlos at 651-789-9215 or email her at mlhandlos@pediatrichomeservice.com. You may also contact United Way First Call for Help for additional camps at 651-291-0211 or 1-800-543-7709.

Asthma Camp for kids ages 7 – 16 with asthma.

  • Super Kids Camp in Loretto (just west of Minneapolis)
    • July 11 – 16, 2011
    • Applications due: May 20, 2011.

AuSM Summer Camps for children and young adults with autism. Camp brochures are mailed to current AuSM members, and only current AuSM members are eligible for camp. Sessions include:

  • Camp Hand in Hand near Brainerd
    • June 18 – 23 for boys 9 – 16
    • July 3 – 8 for boys 14 – 21
    • July 31 – Aug 5 for boys 9 – 11 and girls 9 – 21
  • Wahode Day Camps in Eagan
    • Week 1: June 27 – July 1 for ages 8 – 14
    • Week 2: July 18 – 22 for ages 6 – 12
    • Week 3: Aug 9 – 12 for ages 8 – 14
  • Camp Discovery for ages 10-21 with Asperger Syndrome, near Maple Lake
    • June 25 – July 1 for ages 10 – 21
    • July 3 – 8 for boys 10 – 21
    • Discovery Extreme Adventure: July 8 – 11 for ages 10 – 21

Camp Needle Point for children ages 5 – 16 with diabetes. Sessions at Camp St. Croix in Hudson, Wisc., include:

  • August 15 – 19 (day camp) for ages 5 – 9
  • August 14 – 20
  • August 21 – 27
  • Registration is now open.

Camp Odayin for children with heart disease:

  • Residential Camp July 18 – 22 for ages 14 – 15, July 25 – 29 for ages 16 – 17, August 8 – 12 for ages 8 – 11, August 15 – 19 ages 11 – 13
  • Day Camp August 1 – 5 for ages 6 – 7
  • Family Camp October 21 – 23
  • Applications are available now and due in early May. Family Camp applications are available in August and due early October.

Kamp Kace for school-age children in all stages of cancer treatment

  • June 26 – July 1

Camp M.A.S.H Make. Arthritis. Stop. Hurting. Camp for children ages 9-17 who have arthritis or a related illness. Camp located at the Easter Seal Center for Camping and Recreation, one mile north of the Wisconsin Dells.

  • August 6- 11
  • Registration is now open.
  • Reserve your child spot with a $25.00 deposit by May 1st.

Courage Center has many camp sessions for many interests. They also offer camps for independent and active adults Ages 18 and family camps.

  • Literacy, for campers who are struggling readers
    • June 19 – 24
    • ages 12 – 18
  • For Campers with physical disabilities or visual impairments:
    • Youth session: July 18 – 23, ages 7 – 12
    • Teen session: July 18 – 23, Ages 13 – 17
  • For campers with communication disorders:
    • July 31 – Aug 6
    • ages 7 – 14
  • Leadership for teens with physical disabilities or sensory impairments:
    • July 31 – Aug 6
    • ages 13 – 17
  • Hemophilia:
    • July 10 – 16
    • This session is co-sponsored by the Hemophilia Foundation of Minnesota and Dakotas. It is geared for children who have hemophilia and other related bleeding disorders.
  • Oncology/Blood Disorder session:
    • July 25 – 29, ages 7 – 17
    • This session is co-sponsored by Children’s Hospitals and Clinics-Minneapolis and The Miracles of Mitch Foundation. It is geared for children who have or had leukemia or other blood disorders, brain tumors and other forms of cancer.
    • Application deadline is May 20.

Have your kids attended summer camp? Which sessions can you recommend? We’d like to hear about it. If you have photos of your happy campers, we’d love to see those, too.

Jamming at JAM: Sharing Care at Juvenile Arthritis March

Friday, March 11th, 2011

Check out Charles Dias, a PHS kid, starting this year’s Juvenile Arthritis March (JAM). You’ll see he sounded an empty air horn so he ends up yelling ‘GO’ into the microphone instead!

This wasn’t just another Saturday at the Mall of America. Groups dressed as doctors, Thing 1 and Thing 2 (Dr. Seuss characters), a team in camouflage “hunting” for a cure, and Charlie’s Angels, walked the mall, cheering each other on, collecting candy while enjoying music.

This was the annual JAM, held Saturday, March 5. This year’s event was a huge success, with more participants and funds raised than ever before. All funds go the Arthritis Foundation of the Upper Midwest, targeting research for juvenile arthritis. Charles was one of the top three fundraisers.

See photos of PHS and Charlie’s Angels at JAM

PHS’s Sharing Care volunteers, Lisa, Nick, Michael, Karen, Dana, Janelle and her three sons, were proud to join the march to support the Arthritis Foundation of the Upper Midwest. Charlie’s Angels were one of the most motivating teams on the route, loudly cheering on all the walkers. The event culminated with a performance by the Minnesota music group, Koo Koo Kanga Roo.

More on Charles’ Honorary Chairperson role

PHS was proud to JAM with Charles and so many other wonderfully generous marchers!