Happy Father’s Day to the dads who are the cheerleaders in their children’s lives.
The dads who wipe away tears, give the best hugs and never leave their child’s side.
The dads who love their sons and daughters for exactly who they are.
You make a world of difference.
On a sunny morning June 1st, the Children’s Hospital put on another successful Baby Steps 3k at the Minnesota State Fairgrounds. This annual walk, which benefits the neonatal program at Children’s (including the neonatal intensive care unit, infant care center, special care nursery, and more), gives participants the change to mingle with Children’s caregivers, neonatal grads and families at the after party.
Five PHS volunteers helped make sure walkers stayed on track throughout the route, cheering them on as crowds of bright team t-shirts and strollers marched past. And these walkers made a difference – a total of 127 teams showed up (a record for the 3k) and raised $105,000.
That kind of success deserves a party – and they were prepared to throw one! Walkers finished their trek to be greeted by Radio Disney, bounce houses, face painting, photo booths, and more – our volunteers even caught up with Victor, the Vikings mascot. We can’t wait to join again next year!
The following Saturday, seven PHS volunteers showed up for the 5th Annual HopeKids Suburban Walk and Run – but this time to participate as walkers rather than traffic directors. This event is the largest fundraising event for HopeKids, raising a significant percentage of the money needed each year for them to provide all of the events that families involved in this organization enjoy.
The event brings distances for all types of athletes, including a Kids Fun Run, 5k walk, 5k run and 10k run. The morning attracted 150 runners, about 300 walkers and another 100 people as activities coordinators and volunteers to the neighborhood in Lakeville, and HopeKids President, Josh Taylor, was thrilled with the turnout.
“Huge thanks to all our HopeKids families for raising money and all the corporate sponsors that gave so generously,” he said.
Our team participated in the 5k walk (we weren’t sure we could keep up with those 10k runners) and enjoyed the company, conversation and scenery that this event brought together.
After the Kids Fun Run ended, the post-race entertainment kicked right in. There was everything from mascot football and dog agility demonstrations to face painting and sports available – truly an event for any age. We were happy to see so many participants show up and support this amazing organization – they provide families with a medically-complex child an outlet of fun and entertainment during what can otherwise prove to be a stressful time, and we know that helps kids thrive.
Pediatric Home Service has always lived by the mission of ‘taking care of the child.’ We have made it our goal to always provide the best care for our patients and their families, every single day. In our Patient Spotlight segment you’ll read stories and see pictures of some very special kiddos and their families. PHS kids truly do thrive and we’re excited to be able to share their stories.
“He is my Little Champion”
When Hernando was born and diagnosed with anoxic encephalopathy and Cerebral palsy, doctors didn’t believe he’d live more than eight months. But now, at 5 years old, Hernando is a smiling, water-loving boy thriving at home. “He is a really strong little boy – he’s my little champion,” says his mom Luz.
After spending the first four months of his life in the hospital, Luz decided to take him home and care for him there. “During the first two years, we were at the hospital more than we were at home,” she says. But since getting a trach and G-J tube placed, Hernando’s health has improved drastically. In the past year, he has only been in the hospital once when he came down with pneumonia.
At home, Hernando attends school two days a week and will be starting Kindergarten in the fall. He loves to go on walks in his manual wheelchair,playing in the water and listening to music. “At home, he just does better. He’s a much happier, comfortable boy,” says Luz, “I can bring him out to socialize with others, and he can attend school and just enjoys his time.”
With summer here, we’re sure Hernando will be able to get out on plenty of walks and take Kindergarten on with gusto in the fall. And we are so excited to be there with him and his family on the journey.
Today in Know the Nurses we’re introducing you to one of our private duty nurses,Tammy Krautkremer, RN, who has been with PHS since November 2011. Recently, we learned that Tammy’s daughter, Kelsey, is in need of a kidney transplant due to her Chronic Kidney Disease. A student at the University of Minnesota Duluth, Kelsey began raising awareness and funds to find a donor and currently, she has had many willing candidates and is waiting for a few recent labs to come back before choosing someone to set up a consult. The Krautkremer family has set up a fundraising page to cover the costs of travel and living for the donor while in Minnesota, and plan to use any additional funds raised towards the medical costs of this process. If you’d like to learn more about Kelsey or donate, visit her page here.
We already know our nurses provide comprehensive, round-the-clock care for patients in their homes every day, but here are a few fun facts about Tammy you might not know.
job. I know how difficult it can be to trust someone else to care for your child.
of their wedding cake I made for them 25 years ago.We love learning more about private duty nurses and hearing their stories. Do you know a PHS nurse who you’d like to see highlighted?
Spending time outdoors has a number of health benefits, including vitamin D absorption
On May 8th, Dr. Laura McCauley gave a presentation at Amplatz Pediatric Grand Rounds on the role of vitamin D in lung disease, and that got us thinking about what other roles this vitamin might play in our health. With summer on its way in, Minnesotans and out-of-staters alike are flocking to the outdoors, anxious to stretch their legs and soak up the sun after a long winter. And as the sun starts to peek out and the temperatures begin to rise, we’ll all benefit from another added bonus – vitamin D absorption. According to the Mayo Clinic website, as little as 10 minute of sun exposure is thought to be enough to prevent deficiencies. Your bones will thank you for your consciousness to get enough of this vitamin – deficiencies can cause your bones to become thin, brittle or misshapen.
While there are multiple forms of vitamin D, two are important to our health – D2, or ergocalciferol, and D3, or cholecalciferol. D3 can be absorbed by the skin when exposed to sunlight, but if you can’t get outside to absorb vitamin D, you can also find both in a number of dietary sources. Fish, eggs, fortified milk and cod liver oil all contain vitamin D – or you can find it in supplement form.
What good does vitamin D consumption do? There are many benefits of maintaining an adequate level of vitamin D. A few of the benefits, according to Medical News Today, include:
So whether it’s going for a walk, eating breakfast on the porch, or blowing bubbles with your kiddo, find ways to get 10 minutes of sunshine into your day. Not only will you get your daily dose of vitamin D, but your body and mind will enjoy the fresh air! What are you going to do to get outside this weekend?
The biomedical team serves up chips and salsa to PHS staff
It’s Healthcare Technology Management Week, and we know that our biomedical department is another crucial component in keeping the children we care for safe, healthy and able to thrive like they do. As an expanding department at PHS, the skills and expertise that they provide and use to collaborate with clinicians means the most complete care for the child. So what is it, exactly, that they do? Let’s start with the very beginning of their task: What happens when a parent or caregiver calls PHS with a concern about a product or piece of equipment in the home?
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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!
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.
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!
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.
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.
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!
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!
“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
“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
“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!
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!
