Guest Post: Getting Out and About with Medical Equipment

May 17th, 2013 | By: PHS | 0 Comments

Today, we’re pleased to introduce Aliza Chana Zaleon, who blogs at Aliza with Diabetes. We met her as a volunteer for the Oley Foundation at a conference and knew we wanted to get her insights for our readers.

Aliza’s illnesses (which were still mystery diagnoses) intensified when she was 14-15 years old and soon spent more and more time in the hospital, with days sick outnumbering days in school at one point during high school. That began her journey through the medical system, searching for answers to curious problems – even venturing out of state on a few occasions to obtain treatment at hospitals with more expertise in her “odd asthma and respiratory” conditions. Finally, almost two years later with monthly hospital admissions and continuous nebulizer treatments, intravenous and inhaled steroids, she found she had a rare form of cystic fibrosis, a genetic disorder that impacts the lungs primarily, and the digestive system as well.

She quickly learning the importance of standing up for her own rights and advocating for the things required to heal. Now, although she is still closely acquainted with the hospital and her physician, she no longer requires monthly or even quarterly hospitalizations because of proper management. Treatment is constantly evolving, and Aliza’s very active role as a member of her team is part of what led her to become a health coach.

Aliza just graduated in April from Health Coach Training Program, a distance learning program at the Institute for Integrative Nutrition, based in NYC as a board certified health coach. Now, she uses her personal experience with what she learned in school to help people with chronic illness live more manageable lives. Read on to learn more about how Aliza has learned to travel and lead a busy lifestyle with medical equipment by her side.

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It can be incredibly difficult to lead an active lifestyle when you live a life that is dependent on home medical devices. For those who are living on home medical therapy, be it home infusion, enteral feeds (tube feeds, either continuously, for a large portion of the day, or intermittently by a feeding pump or by gravity through a g-tube, j-tube, or Naso-gastric/naso-jejunal tube), oxygen therapy, nebulizer therapy for a lung disorder, or even living with an insulin pump or multiple daily injections for diabetes, there are added things to think about each time you leave the house that others who do not live with chronic medical conditions do not have to ever consider. With today’s technology and portable equipment, it is no longer necessary to stay close to home 24/7, or be tethered to a hospital bed because of medical needs. Here are some things that I did, and still do while on home medical therapy, to be able to get out of the house and do the activities that I would like to do, while still maintaining my medical treatment schedule.

Food Pumps

While I was on enteral feeding through my g-tube, I used a small, portable feeding pump that fit in a backpack. I was able to put my feeding bag and pump in the backpack, and go out and about for the day. My pump held a charge for several hours, and I was able to plug the pump back in when I got back to my dorm room to charge in between classes or activities, or if I was going to be gone for a long period of time, I could bring the battery charger with me and plug my feeding pump in while I was out of my room while still carrying my feeds in my backpack. This was really essential for me, as I had to run my tube feeds at a slow rate because of my GI condition, and I was on tube feeds for a minimum of 18 hours each day. If I could not take the feeding pump with me, I would have been tethered to a pump and pole, likely in bed, and been unable to attend classes and activities. It is still possible to do tube feeds and attend activities at the same time — trust me, I’ve done it!

Long-Term IV Therapies

Likewise, with TPN, continuous hydration, or other long-term IV therapy, there are many small, portable battery operated IV pumps on the market that fit in backpacks, or even small waist packs today. I am frequently on IV antibiotics for my lung condition, and my antibiotics are often scheduled every six or eight hours. That makes it very difficult to get anything else done if I have to stop and plug in to a bulky pump at home every six hours! Many of the medications come in elastomeric, individual self-infusing “balloons” that are self-contained, and fit in my pocket. Those that require a pump use a small pump that fits in a backpack. For TPN, often one is on two or three liter bags of hydration each day with added nutrients. This is infused throughout the day, and with the portable pumps and backpacks, it is possible to go to class, go out with friends, attend social activities, and do almost anything that one wants to do! I’ve even travelled across the country on an airplane while infusing my TPN.

Oxygen Concentrators

Just like TPN and enteral feeding, there are now portable oxygen concentrators that make traveling with oxygen a breeze! I can fly on an airplane with the portable oxygen concentrators, and use the battery operation while in flight, and plug them in to keep them charged while in conference centers, hotels, waiting for connecting flights in airports, or anywhere where there is a power outlet. I have also used the portable oxygen concentrator while traveling by car, and can plug the concentrator in to charge in the car as well. Likewise, I have a portable nebulizer to get my breathing treatments that will fit in my backpack, rather than having to take along a large, bulky full size nebulizer. While it is still a lot of equipment, it is so much easier than it was a few years ago to travel with medical equipment!

Flying With Medical Equipment

Traveling with medical equipment is getting easier, and when flying, airport personnel is getting much more familiar with various medical equipment. To make travel go much more smoothly, it is important to have letters from your physician listing the equipment and medications with which you will be traveling, and to check with your airline ahead of time to be sure that you have all of the documentation that they require filled out in advance. Each airline differs slightly in my experience with the information that they require for traveling with medical equipment, and they each have their own forms that they like for you to use. While a letter from your doctor will generally suffice, I’ve found that things go best when you use the airline specific form each time you travel. Also, the airlines require you to have a new form filled out each year, even if it is for the same equipment, and for the same information. Be mindful of the information that you need, and give your doctor enough lead time to ensure that you have the proper documentation before you leave town!

The last piece of information that I want to add is that most airlines do not charge you for extra baggage that is dedicated for medical supplies. You may want to think about this as you pack, and pack your medical supplies in one bag, with some extras put into another bag, just in case of an emergency situation with your medical supply bag. Also, be sure to keep at least a day’s worth of medical supplies with you on your person in case of lost baggage.

I hope that I have given you some helpful advice about traveling with medical equipment.

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Thanks so much to Aliza for contributing her best practices and tips she’s discovered as she stays active and independent with her medical equipment. If you have a topic idea or would like to be a guest on the PHS blog, please e-mail Kelsey at kkhalena@pediatrichomeservice.com.

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Pitching and Planting with Sharing Care

May 14th, 2013 | By: PHS | 0 Comments

Every Child Deserves A Chance to Play Baseball.

And that’s why there’s West Metro Miracle League. WMML is a non-profit organization run by volunteers which gives children between the ages of 3 and 19 with any cognitive and/or physical challenges the great opportunity to play baseball. Last year in the west metro, 12 teams – comprised of 132 players – hit the diamonds at Bennett Family Park in Minnetonka to play ball! There are also leagues in the north, east and south metro areas – visit the Miracle League page to get more details on these opportunities.

PHS brought in the first real days of spring by teaming up with the Pirates from West Metro Miracle League for a fun game of baseball on May 7 (see more pictures from the night here). After lacing up our shoes and practicing our swing, we had a great evening of batting, running, catching and cheering each other on. It was a perfect evening for it, and the St. Paul Saints were there to provide some entertainment to boot! Everyone was a winner that night, and the energy that the players brought to the field was enough to remind every buddy, coach, and spectator why programs like this are so important.

A Place Where Hope Grows.

Each spring, PHS employees look for forward to one event that happens rain or shine (or sleet) – the annual Spring Clean-Up for Faith’s Lodge.

On May 10, 26 volunteers drove to Danbury, Wisconsin for another fun and productive weekend of cleaning and landscaping at the lodge. Last year, we were there for their Tree Planting Day to revive the land after a storm knocked a huge number of the trees down in 2011. This year, we went there with a mission to plant more trees (80, to be exact), stain their playground and benches, lay grass seed, and plant flowers. Although the sleet and temperatures didn’t scream spring, we know the sunshine and warm weather is on its way and wanted to do whatever we could to ensure families will be able to enjoy the amazing surroundings, resources and reflection space that Faith’s Lodge provides.

If you’re the parent of a medically-complex or seriously ill child, it’s not too late to join other families at Faith’s Lodge for the week of June 25-30. If you’re interested, please contact PHS clinician at 651-642-1825. If you or someone you know could benefit from Faith’s Lodge this week or any other time of year, please visit their website to learn more.

To keep up with what PHS is doing in the community, like us on Facebook – we love to hear from you!

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Thank a Nurse in Your Life

May 10th, 2013 | By: PHS | 0 Comments

It’s National Nurses Week, and there’s no doubt about it – we’ve got a lot of amazing nurses here at PHS. Whether they’re coming in to patient homes for a private duty nursing shift or an infusion visit, our RNs and LPNs are simply the best. Nurses undoubtedly have some of the best stories from experiences on the job, and throughout the week we were able to hear some of them – and wanted to share!

Why did you choose nursing as a career?

“My first child was a very ill child.  He in was in the hospital for many months and I did all his nursing cares that I could in the hospital and at home (like many of our families).  Once he was on the road to recovery, I went back to school for nursing.” - Lacee

“I chose nursing because of the passion I have for caring for people who cannot help themselves. Because of this passion, work doesn’t seem like work; rather, it feels like a ministry, giving my all to my patients and feeling complete at the end of my shift. I enjoy it so much!” – Ebie

“My mom told me all through my childhood and adolescence I should be a nurse.  After spending a couple years at UMD, I decided to make the switch to nursing and I couldn’t imagine doing anything else.  It’s a perfect fit! I guess mother really does know best…but don’t tell her I said that!”  – Stephani

“I have always wanted to work with children, the flexibility of hours and job locations, from working in a lab to delivering babies, there are nurses everywhere!” – Holly

What is a memorable story from the road on your way to see a patient?

“One of my patients had a turkey for a pet (and it was about as big as a large truck tire!) that I didn’t see it as I walked up toward the house and didn’t know it was a pet. It gobbled at me and starting running toward me… I dropped my bags and ran away (probably screaming). Then the patient came out laughing and yelled to me it was a pet just like a dog – could have fooled me!” – Chrissie

“On the way home from an 11 hour shift in which nothing seemed to go right, I was exhausted, driving in snow, freezing because my heat hadn’t kicked in, and dreaming of my bed.  I saw an older man lying on the side of the road with a police officer standing over him.  My nursing instinct told me to stop, so I did and asked if I could help.  Turns out the man had fallen on the ice after crossing the street and thought his ankle was broken.  So I sat down on the ice, gently unlaced and pulled off his boot, and pushed his jean leg up.  Yep, broken ankle.  So I sent the cop into the nearby gas station for ice and sat there with him for 20 minutes before the ambulance arrived, put the splint on, and got him into the ambulance and off to the hospital.  That night I wished I had driven my husband’s car with heated seats because my back side was frozen solid!” – Alicia

“I once drove in blizzard conditions (should never have been on the road) to pull a PICC line on a 4 year old. I had tried to convince mom it could wait until the next day, but she had promised her daughter it was coming out this particular day – so I went. When I got there, she had finally gone outside and said to me- You should never have come today!” – Jill

What is your favorite or best nursing moment?

“I think most shifts because almost every day there is at least a little forward progress made.  We may not always see it, but when I think about where they were when I started with them and where they are today, I can see the improvements.  I don’t know if they would be progressing so well if they were not with their families, living life and seeing that there are things to look forward to, and having us come to them rather than sitting in a hospital away from their families and all of the fun they can have in their own home.  Every day with the kids make me smile, which gives me at least one best moment every day!  – Alicia

“Watching patients fulfill goals; watching babies “firsts,” being given a hug of appreciation, hearing “thank you for giving me the time of day, thank you for listening, thank you for being patient with me.”   – Danielle

“Seeing my first client successfully decannulated and on his way out of needing PHS nursing care. On my last shift with him he woke up in the night needing some comforting and pulled my hand into his crib and held it in his lap for a few moments. He hadn’t reached out to me like that before as I had only been with him for a short time, but it really touched me. His family and him were a wonderful family to be welcomed into PHS by and it was a privilege to be a part of their journey!”  – Ashley

“Hearing a previously trached kiddo who never vocalized, make noises and audibly cry for the first time.”  – Holly

To celebrate the amazing work they do, we finished the week off with an ice cream social to say thanks to the nurses who do such incredible things for our patients, community and company. They truly make a world of difference. If you’re a nurse, we are so grateful for the work you do. If you know a nurse, make sure to thank them for the care they provide to so many day in and day out!

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Thomas Goes to the Grand March

May 8th, 2013 | By: PHS | 0 Comments

On April 28th, PHS patient Thomas’s high school celebrated their prom – and he was at the grand march with the rest of the students in his class. His date Brianna, who is a classmate at the high school, came over to Thomas’s house on Saturday for some photos after she got a few lessons in wheelchair steering to ensure a smooth stroll down the grand march aisle.

That evening, they were off to the high school gym for the march where the crowd went wild as they made their grand entrance. “ I’ve never seen his eyes shine as bright as they were that evening when he was going down the aisle,” mom Andrea said. Thomas hung out with classmates throughout the rest of the march and took pictures afterwards – it was a great evening and we were so happy to hear all about it!

What has your family been up to lately? We love to hear about our patients and families out and about in their communities!

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Shelby’s Make a Wish trip: Days 5 and 6

May 6th, 2013 | By: PHS | 0 Comments

We were thrilled when we found out that one of our patients, Shelby, was granted a Make a Wish to Florida where she can spend time exploring, playing and being the amazing two year old that she is. Follow us as we follow her, giving you updates on what Shelby is doing and where she’s going. To learn more about Shelby’s story, meet her here.

Day 5

Shelby had a fun day going back to Disney for more rides and fun!

She loved riding in a race car and flew with Dumbo. She even came home with some pretty princess clothes!

Day 6

Shelby spent the day at the resort swimming and riding the carousel.

She and her sister went to the magic tree where they both got princess pillows – it was a fun end to a great day and trip!

We had a great time following Shelby as she met princesses, went swimming, played with dolphins and rode carousels- and hope you did too! She is one amazing girl, and all of us at PHS love seeing her thrive.

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Meet the 2013 PHS RT Scholarship Winners

May 3rd, 2013 | By: PHS | 0 Comments

The PHS respiratory therapy scholarship is designed for students or recent graduates enrolled in respiratory therapy programs. There were two second place awards of $500 and one first place award of $1,000 given – we had many great applicants! Below, we’re pleased to introduce the three scholarship winners.


Xe Yang –Winner of the First Place $1,000 scholarship

Growing up, Xe remembers always wanting to play the role of a helper – the mother, the father, the doctor. By helping, she was able to make an impact in someone’s life – a trait she carried into her adult life as she became determined to have a career as a health care professional.

Now, as a student at St. Catherine University, Xe is preparing to be a respiratory therapist and wants to work with children in the future. “Children are new to this world, and their level of understanding is not as broad.  They may question a lot about their condition, and it is extremely important to have focus on these individuals so they can gain better knowledge about their condition.  With the improved technology today as well as adding some fun into equipment, I hope to one day be a part of a service that involves children to become active and live freely while maintaining a healthy well-being with their condition.”

Xe says that she came into the respiratory program inspired by St. Catherine University’s mission ‘Lead and Influence’ – as an RT, she is excited to lead others to good health and influence them to a better meaning of life, while also being a leader in regard to new research coming out that challenges current procedure and medicine. As someone who cares deeply for her patients and everything she does, Xe says her primary reason for wanting to become an RT is because she finds enjoyment in the care she can provide for others.

Xe is currently an active member of the American Association for Respiratory Care (AARC) and the Minnesota Society for Respiratory Care (MSRC). She also serves as the Vice President of the Respiratory Care Club at St. Catherine University.

Melissa Weiman –Winner of Second Place $500 scholarship

Currently a junior in Respiratory Care at St. Catherine University, Melissa hadn’t always planned on becoming a respiratory therapist. But after searching for a new career, she recalled the care her sister received at the local hospital after an accident and began considering a path in healthcare.

While following a respiratory therapist on a shadowing shift, she remembers being struck by the depth of skills and knowledge RTs practice with each patient. “From comforting a child in the emergency room during an asthma attack, showing compassion to family members while adjusting a mechanical ventilator on a comatose patient in the ICU, to interacting with other disciplines throughout the hospital, I recognized that the respiratory therapist is an integral part of the health care team,” Melissa said.

Melissa looks forward to her ICU rotations beginning soon, and has gotten involved in community projects through the American Lung Association – recently organizing a group of RT students to participate in the Fight for Air Climb in February. As she looks to her future, Melissa has plans to help people through a holistic care plan, and is also interested in acute care and rehabilitation.

Mohamud Mohamed–Winner of Second Place $500 scholarship

When Mohamud was in a car accident in 2006 and saw a respiratory therapist regularly as a part of his recovery process, he gained a great deal of appreciation for the role the medical personnel played in his life. Along with the observation that was brought to him regarding the need for a Somali-speaking respiratory therapist in the community, Mohamud’s interest was flared. “From then on, I decided to become a health care professional, especially a respiratory therapist, so that I could have a profound impact on patients’ lives when they are most vulnerable.”

While Mohamud is currently focusing on graduating and building patient care skills, he looks forward to eventually go into the teaching aspect of the respiratory field – specifically, patient education about the use of equipment, conditions and reductions of risk associated with respiratory therapy.

As a member of the Respiratory Therapy Student Club, Mohamud has recently helped fundraise over $500 for children with cystic fibrosis. He is also an active advocate for health awareness and vaccination within the Somali community, helping many elders find and understand medical resources they have available. This summer, Mohamud plans to work on awareness of COPD by promoting a smoking cessation program in his community!

Congratulations to all the winners! We can’t wait to see where all of these outstanding future RTs go with their careers.


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Shelby’s Make a Wish trip: Day 4

May 2nd, 2013 | By: PHS | 0 Comments

We were thrilled when we found out that one of our patients, Shelby, was granted a Make a Wish to Florida where she can spend time exploring, playing and being the amazing two year old that she is. Follow us as we follow her, giving you updates on what Shelby is doing and where she’s going. To learn more about Shelby’s story, meet her here.

Day 4

Shelby spent the day at Universal Studios park, where she played with Nickelodeon characters.

She also had a lot of fun going on the “choo choo” at Suessland…

…as well as the carousel at Give Kids the World. It was a busy day of rides and fun!

We can’t wait to see what Shelby has coming up! Check back in regularly to keep up with her latest adventures.


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Shelby’s Make a Wish trip: Day 3

May 1st, 2013 | By: PHS | 0 Comments

We were thrilled when we found out that one of our patients, Shelby, was granted a Make a Wish to Florida where she can spend time exploring, playing and being the amazing two year old that she is. Follow us as we follow her, giving you updates on what Shelby is doing and where she’s going. To learn more about Shelby’s story, meet her here.

Day 3

Shelby had another fun filled day in Florida! She went to Disney World…

…where she rode rides, watched princess shows, and even got to spend time coloring and playing with the one and only Minnie Mouse.

Shelby had a great day having wishes come true!

We can’t wait to see what Shelby has coming up! Check back in regularly to keep up with her latest adventures.

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Shelby’s Make a Wish trip: Days 1 and 2

April 29th, 2013 | By: PHS | 0 Comments

We were thrilled when we found out that one of our patients, Shelby, was granted a Make a Wish to Florida where she can spend time exploring, playing and being the amazing two year old that she is. Follow us as we follow her, giving you updates on what Shelby is doing and where she’s going. To learn more about Shelby’s story, meet her here.

Day 1

Shelby started her trip out in style on a private jet to Florida. As nurse Megan said, “Just call her Beyonce!”

They have arrived! Mom, dad, Shelby and her sister get settled into their home for the next few days before starting on their adventures.

Day 2

Shelby went to Sea World where she got to pet dolphins…

…and stingrays. She had a great time feeding all the sea creatures.

We can’t wait to see what Shelby has coming up! Check back in regularly to keep up with her latest adventures.

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PHS Lends a Helping Hand All Year

April 29th, 2013 | By: PHS | 0 Comments

As organizations around the nation recognized the amazing efforts and opportunities that volunteers bring last week during National Volunteer Week, we couldn’t help but think back on our past year and the time, energy and dedication our staff brought to events that PHS’s community program, Sharing Care, participated in. From Ronald McDonald House to Faith’s Lodge and many in between, PHS was out getting involved and helping in the community of families that we take care of every day.

Sharing Care was created in 2008 to expand how we define taking care of the child, and is designed to:

  • Take our charitable giving one step further
  • Encourage generosity
  • Align our charitable giving with our mission to take care of the child, and
  • Provide PHS employees with the opportunity to donate time to programs and events in the community that are directly associated with serving medically-complex and underprivileged children and adolescents.

    • The numbers speak for themselves – throughout the past year, nearly 100 PHS staff have donated over 350 hours of personal time doing activities like donating blood, planting trees, donning bald caps, answering phones, pedaling, donating toys, being buddies in baseball and basketball, or cooking dinners for families. So while we remembered the importance of volunteering throughout last week, it’s also something that is in our minds year-round. Philanthropy has been in PHS’s culture since its doors opened over two decades ago, and continues to prove important to those who work here today.

    With another year full of volunteer opportunities ahead, we’re looking forward to the ways we can give to others and continue taking care of the child in as many ways as possible! Do you have any upcoming volunteer activities you’re participating in? We always love to see members of the community helping out.

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