PHS Blog

PHS to conduct clinical study on tracheobronchitis

September 3rd, 2010

Starting this fall, PHS will be conducting a clinical observational study in its tracheostomy dependent patients. One of the most common medical conditions that occur in pediatric patients with artificial airways is tracheobronchitis.

What is tracheobronchitis?

Inflammation of the lining of the trachea and bronchi is termed tracheobronchitis. Normally the trachea and bronchi are free of infection and inflammation. The presence of a foreign body in the airway such as a tracheostomy tube allows the airway to remain colonized with bacteria. At times these bacteria can overcome the lung defense mechanisms and cause a tracheobronchitis. Symptoms may include cough, increased trach secretions, discoloration of trach secretions, fever and increased work of breathing. Untreated, tracheobronchitis may progress to pneumonia and warrant hospitalization. Treatment often includes administration of either nebulized or systemic antibiotics.

What does this mean for the caregivers in the home?

Very little is known about the frequency of tracheobronchitis in pediatric homecare patients with tracheostomy tubes. Starting this fall, families and caregivers of PHS patients with tracheostomy tubes will be asked to participate in a study being conducted by the PHS clinical staff. Involvement by families and nursing staff is voluntary, will remain confidential and limited to providing information to the RT clinical staff on a monthly basis by questionnaire or phone call. Patients will be followed for one year to determine how often tracheobronchitis occurs in this population and interventions prescribed by their health care providers.

What will we gain from the study?

Information provided will establish a benchmark for the incidence of this disease and the standard of care for its treatment in this community. Potential benefits of this study include identifying risk factors predisposing patients to tracheobronchitis and strategies to mitigate disease recurrence.

Information will be distributed by PHS to tracheostomy dependent families and patients prior to initiation of the study. Further questions can be addressed to the respiratory therapy department or Roy Maynard, M.D., medical director PHS.

Do you have any questions, thoughts, or comments on the study? We’d love to hear from you and answer any questions you may have.

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Sending kids with asthma back to school

September 2nd, 2010

By: Kay Kufahl, RRT-NPS, LRT, AE-C and Barb Lehn, RRT-NPS, LRT, AE-C

It happens every year. Commonly called the September Asthma Epidemic, researchers have tracked a predictable increase in ER visits, hospital admissions and unscheduled doctor visits that peak 17 days after Labor Day — Sept. 23 this year.

The PHS Asthma Department offers this checklist for parents who are sending children with asthma back to school:

- See your doctor before school begins (or as soon as you can) for an up-to-date asthma action plan for during the school day

  • As your child grows and changes, so does his or her action plan

- Give the school a copy of your action plan

  • Different schools handle meds differently, so having your child’s action plan on file ensures a nurse won’t waste time and can properly administer the right treatment
  • In addition to the school nurse, ensure your child’s teacher and any staff member who will have regular contact with your child also has a copy of the asthma action plan. Teachers should also be aware of the child’s asthma.

- Meet your child’s teacher

  • If your child has other medical conditions, you’re probably well-acquainted with your school’s nurse, teachers and other staff members
  • Tell the teacher about your child’s daily meds
  • Schedule a separate meeting with him or her if needed
  • Share details of your child’s early warning signs and symptoms of a severe flare
  • Ask if there will be any classroom pets or visits from animals
  • Discuss upcoming field trips
  • Talk about your older child having his or her inhaler with them; it’s legal in Minnesota, but you must complete the required permissions

- Fill inhaler prescriptions before the first day

  • You may need a new quick reliever inhaler for school
  • Have one inhaler for school; one for home
  • Check inhalers
  • Make sure the valved holding chamber is in good working condition
  • Remember, inhalers expire: make sure yours are not expired

- If you use a liquid quick reliever, bring it and a few hand held nebulizer kits to school

  • Don’t forget the mask
  • Ensure you have enough hand held nebulizer kits for home and school use

- Continue to use your daily controller medications

  • Remember, these take time to build up in the body so staying on a schedule is important

- Stay in tune

  • Make changes to your asthma action plan and communicate these to your child’s school nurse and teachers
  • Visit the PHS website Resource Library for more asthma website resources

What helps your child with asthma to avoid episodes during the school year? What works for your family and your school?

We’d love to hear from you.

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Back-to-school lessons to help keep your child infection free

August 27th, 2010

Once you get your children back to school, you’d also like to keep them there. School allows kids to learn from other kids through projects and play. Yet school is also prime germ-spreading time. Illnesses are inconvenient for all families, but infections can be downright dangerous for medically-fragile kids, who can be exposed at school themselves or through school-age siblings.

Here are some tips to help all kids stay infection free:

1. Wash your hands.

It takes just a minute, yet hand washing is the single best way to avoid getting sick. Teach your kids how to properly cleanse their hands and encourage them to do so often at school. First thing to do when they get home? Wash their hands. Second, get a hug from you.

Check out PHS’s Handwashing Guide or call 651-642-1825 and we’ll send you a free guide to put by the sink in your bathroom or kitchen.

2. Cough and sneeze nicely, please.

Teach children to cough or sneeze into a tissue, then immediately throw it away. Or, cough or sneeze into their shirtsleeves—not into their hands, which quickly spread germs. Better yet, after coughs and sneezes, wash those hands again.

3. Sick? Stay home.

Never send a sick child to school. We suggest these guidelines:

  • Sniffling: sniffles alone are probably fine (send a box of tissue for your child’s classroom supply), but if sniffles are accompanied by aches and fever, it could be flu, so stay home.
  • Chills, Sweats: stay home with a fever (temp 100°F or higher taken orally). See a doctor if there are also white patches on the tonsils; it could be highly contagious strep throat.
  • Coughing: if it’s deep, causes shortness of breath and brings up green mucus, stay home and see a doctor.
  • Earache: when accompanied by fever or cold symptoms, stay home.
  • Pinkeye: bright red eyes with creamy white mucus in the corners that mats the eyelashes. It’s highly contagious so stay home.
  • Lice (lice pediculosis): stay home until treated and all adult and immature lice are gone.
  • Strep Throat (Streptococcal infection, group A): stay home until 24 hours after adequate antimicrobial treatment started.
  • Chicken Pox (Varicella): stay home until all lesions are dry and crusted. If you are exposed, you should stay home from the 10th day after the first exposure through day 21 after the last exposure.

No flu for you

Back-to-school season also begins prime flu season. PHS follows the Centers for Disease Control recommendations and encourages caregivers to contact their physicians for scheduling seasonal and H1N1 vaccines when appropriate. For more information, visit this website or call 800-CDC-INFO (800-323-4636).

PHS Infection Preventionist, Pat Chamberlain, BAN, RN, CRNI, is available as a resource to PHS families to answer any questions you might have about keeping your home infection free. Email Pat or call her: 651-642-1825.

What helps you stay healthy during the school year? What works for your family and your school?

We’d love to hear from you.

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Hassle-free family visit to the MN State Fair

August 19th, 2010

All-you-can-drink milk, $1. Scavenger hunts. Tractor rides. Watching a lamb come into the world. Everything to eat on a stick.

The great Minnesota get-together, the Minnesota State Fair, runs August 26 – September 6 this year. Planning to spend a day there can be daunting for any family, especially with a medically-fragile child who has special needs.

Yet it’s also a day you’ll all 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. Plan ahead and save

-      Get discounted tickets at Cub Foods

-      Check out discount days and the Blue Ribbon Bargain Book

-      Consider using mass transit or carpool

-      If you’ll bring oxygen, prepare with tips from this PHS blog post

-      Talk with your PHS clinician for other guidance specific to your child and family

4. Preview

Talk with your kids about what they’d like to see and do. It’s challenging to do the entire MN State Fair in one day, so plan to focus on entertainment, exhibits and even food that most interests your kids—all under the clever guise of educating them about our great state!

5. 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

Fairgrounds map

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.

6. 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 http://twincities.momslikeme.com/members/JournalActions.aspx?g=152633&m=113301&grpcat=

7. 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? 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.

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10 tips for vacation with medically-fragile homecare kids

August 13th, 2010

There’s still time for one last family getaway this summer. Travel allows you to change up your routine, yet for medically-fragile children and their families, it can be terrifying—not exciting.

These 10 tips can help you and your family relax and enjoy some away-from-home adventures:

1. Talk with your PHS clinician before the trip

He or she will help you prepare, including getting a copy of your child’s current physician orders to keep with you and helping you with other planning details.

2. Pack or arrange to ship disposable supplies and equipment

You can carry disposable supplies with you or PHS can ship disposable supplies to your travel destination in the United States (except Hawaii and Alaska.) Contact PHS customer service at 651-642-1825 to make arrangements for shipment of supplies from PHS to your destination.

If you are planning to ship your child’s equipment, make sure it arrives safely by packing it in a correctly sized box. Call PHS if you need boxes for your child’s equipment.

3. Bring backup equipment

Pack backup equipment or arrange to have backup equipment ready for your use at your destination.

4. Know your resources

Before leaving home, call a hospital in your travel area and ask for resources that fit your child’s medical needs. Be sure to say that these medical resources are for a child because most homecare and medical equipment providers center on adult care. If you’re unsure where the nearest hospital is in your travel area use the US Hospital Finder website to help locate one.

5. Let the airline know

Before buying a plane ticket, call the airline or PHS to talk about your child’s medical needs. If medical support is needed during flight time, your airline may require a doctor’s order. If you need oxygen during your flight time, your airline will require you to use their oxygen tanks, not your own. You will also want to make sure your medical and equipment needs are met at the airport terminal before you board and after you arrive at your destination.

6. Line up oxygen if needed

Some companies specializing in oxygen and related medical equipment for travelers are:

Advanced Aeromedical

For a fee, provides oxygen for airport layovers, hotel stays, cruise ships, and motor tours.

Breathin’ Easy

Identifies oxygen providers in cities throughout the world.

Travel O2

For a fee, arranges for worldwide delivery of medical and oxygen equipment.

7. Bring home with you

Make your hotel or other lodging a little more like home with a familiar stuffed animal, blanket or pillow. Consider a room with a small kitchen.

8. Keep your schedule consistent

As much as possible, keep bedtimes and wake-up times the same as at home, accounting for time changes. Try to have a trip routine from day to day, even if the specific activities change.

9. Preview and review

Each morning, talk with your child about the day ahead, and review the day each evening.

10. Most of all, enjoy the experience and take plenty of photos and video. PHS would love to hear about your adventures, too!

How do you prepare for time away from home? What works for you and your family while on vacation? Do you have tips, based on your vacation experiences? Any places that have been especially accommodating for you and your family?

We’d love to hear from you.

We provide these resources as a convenience and for informational purposes only. Always consult your child’s doctor regarding your child’s care plan. PHS is not liable for the content of any of the resources listed nor do we endorse any commercial product or service mentioned or suggested.

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Protecting home medical equipment from summer storm power outages

August 6th, 2010

Lightning, thunder, dark skies and sirens during summer storms are upsetting. Yet power outages from thunderstorms and tornadoes can be very dangerous for kids who depend on home health care equipment.

When storms hit, children may become upset and clingy. You may become anxious at the possibility of losing power for your child’s medical equipment.

Be prepared to weather summer storms

Here are some steps you can take now to keep your children calm during storms, and to weather power outages without interrupting your child’s home health care equipment and its functions.

How to calm kids during summer storms

  • Stay near children during the storm, comforting them and getting their minds off the storm with games, stories, snacks, books and songs
  • Keep flashlights and batteries handy
  • Be attentive, but not glued to news sources about approaching weather; Avoid having children listen to or watch weather coverage nonstop
  • Tornado watch or warning? Go to a basement, windowless room or storm shelter with:
    • Essential medical equipment and supplies
    • Backup batteries
    • Flashlight and batteries
    • Battery-operated radio

Emergency backup plans for kids’ home care equipment

PHS helps families prepare emergency backup plans for their child’s overall care, which includes arrangements for generators, batteries or transport to a medical facility. Special considerations:

  • Respiratory needs: Many pieces of equipment require constant supply of electricity; Have alternative sources of power available such as extra, fully-charged batteries or a generator.
  • IV and pharmacy needs: Medicines often require refrigeration, so when power goes out, refrigerators stop running. Keep a cooler and ice on hand to keep medication properly chilled.
    • Curlin pumps: Use C-cell batteries to keep the pump running. Keep a supply of extra, fully-charged batteries on hand.
  • Food pump and formula needs: When a food pump is not in use, PHS recommends charging it so it is fully charged in case of a power outage. If power is lost and your food pump does not have a charged battery, you may use a gravity bag. If you are uncertain how to use a gravity bag, contact PHS.
    • Keep mixed formulas in a refrigerator when the power goes out until the refrigerator can no longer keep items cold. If the refrigerator cannot keep formula cold during a power outage, discard the formula and mix smaller amounts as needed.

How do you keep your children calm during storms? What’s your backup plan for medical equipment in case of a power outage? Do you have tips to prepare for severe weather and its impact?

We’d love to hear from you.

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Special needs children and summer fun

July 28th, 2010

Who doesn’t love summer – especially if you’re a kid?

Meet some Pediatric Home Service children who don’t let complex medical conditions get in the way of safely enjoying all kinds of outdoor activities.

Pediatric Home Service patient Lucas playing summer league baseball

Lucas loves baseball and sees plenty of action on his Miracle League, team the Rays. Born with Down Syndrome, Hirschprung’s Disease and short bowel syndrome, Lucas is safe at home plate and safe at home with his family. PHS provides TPN, enteral feedings and other care, and he has been in the hospital for two brief stays in the last three years.

Pediatric Home Service patient Tana riding horseback on the beach with mom Jill

Although she is wheelchair-bound, Tana rides horseback, swims, tubes, and goes four-wheeling. Born with spina bifida, she was also diagnosed with a brain malformation, breathing disorder and MRSA. Expected to live to age five, Tana is almost 13 and enjoys a remarkable quality of life. She has even taken trips to Mexico and Disney World.

Pediatric Home Service patient Emily romping on playground equipment.

Emily can do almost everything other kids do, which is remarkable considering what she’s been though. Born with multiple congenital problems, including omphalocele and restrictive lung disease, she spent her first six months in a hospital and required 24-hour nursing care when she first came home from the hospital. Today, Emily uses some oxygen at night and will have surgeries on her back until she reaches skeletal maturity, but as you can see, that doesn’t slow her down one bit.

Here are a few more PHS “kids being kids.”

Kali slides down to mom

Emerson enjoys swinging outside

Mary Kate plays kitchen with mom

In these “mom and me” photos: Kali comes down the slide, Emerson enjoys swinging, and Mary Kate plays kitchen.

Do you have stories or photos to share?

Got any photos or stories you’d like to share about special needs kids having fun? Or any tips to share on what you and your family do to help your child with special needs venture out into the world and enjoy all it has to offer?

We’d love to hear from you.

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

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.

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Tips for reducing stress and staying strong

July 9th, 2010

Taking care of a family is demanding under any circumstances: doing laundry, making meals, doing housework, juggling schedules, getting kids where they need to go, and generally seeing to everyone’s needs.

It’s much more challenging and complicated with a medically-fragile child at home. In the hospital, your child was cared for in an intensive care unit by many medical experts with years of training, working in shifts, and with lots of resources.

At home, you and your family perform similar duties – with no signing out at the end of a shift. Even with all the help available – training, professional staff in your home, high-tech equipment and lots of support services – caring for a sick child at home can be physically and mentally exhausting.

Stress relieving tips

Here are some tips for reducing stress so you can find some respite and help your family stay strong:

  • Take a break. Find time for yourself, whether it’s alone, with a spouse, your other children, or outside the home with friends and other families. Take a nap. Make date nights with your spouse. Give each of your children one-on-one time with mom and/or dad.
  • Take advantage of having a nursing staff in the home to find time to do other activities as a family while they care for your child.
  • Encourage family and friends to go through ongoing training so they can provide back up.
  • Seek support. Communicate with other parents in similar situations. Use the PHS blog to share advice and information. Make use of your PHS social worker, support services, and other community resources.

Adjust to the new “normal”

Take your medically-fragile children out in the real world. As long as he or she is stable and not in danger, let your kid be a kid. Learn how to adapt and function under your new “normal.” Don’t let the condition allow you to forget they are children and that the flexibility to do things together with the family is one of the best things about being home.

What’s your story?

How do you relieve the stress and strain of caring for a technology-dependent child at home? Do you have any tips for parents on how to stay mentally and physically healthy? How to stay strong as a family?

We’d love to hear from you.

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Worried about taking a sick baby home from the hospital? Help is available.

July 8th, 2010

Janita McLean is right. Taking a medically-fragile baby home from the hospital is scary. And overwhelming.

Taking any baby home from the hospital – even a healthy one – can be daunting. Lots of fears run through the minds of new parents: will I be able to keep the baby safe? How will I know when the baby is sick? How will I know what he or she needs? Can I do this?

For parents who take a child home with tubes and trachs and vents, those anxieties are magnified many times.

Like Janita, you may know how that feels. When Janita brought home her baby, Emily needed lots of equipment and required 24-hour-a-day care. “We weren’t familiar with how to take care of a child with a lot of medical needs, and having the trach and being on the ventilator – it was scary,” said Janita.

As you saw in the video, Emily was born with lots of problems, including a type of hernia known as omphalocele, underdeveloped lungs, scoliosis, and a small thorax. She spent her first six months in a Minneapolis hospital, a situation complicated by the fact that the family lives in northern Minnesota.

Pediatric homecare in northern Minnesota

The distance between the hospital and home was hard on the whole family, says Janita, including brother Taylor, who was five at the time and didn’t understand why mom was gone so much.

Going home was the best option for everyone. And when they were ready, there was lots of help available to help them make the transition.

Respiratory therapy at home

With education and help from health care professionals, including a PHS respiratory therapist who even spent the Fourth of July with the family making sure they were okay, Emily made a smooth transition home. And continued delivery of supplies to northern Minnesota hasn’t been a problem.

Help is available for families every step of the way, from paperwork to in-home services to responding to that emergency, middle-of-the-night call for medication.

Off the vent

Off the vent sooner than expected, Emily has made amazing progress. Her prognosis is good and her parents hope she will someday be able to stop using any oxygen.

“If you didn’t know her medical history, you would never imagine that she has gone through what she has,” says Janita. “She’s just a normal nine-year-old girl.”

Read more about Emily.

Share your stories

Do you have thoughts to share about taking a sick child home from the hospital? What was your experience like? Do you have a child with respiratory or congenital problems?

We’d love to hear from you.

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