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 new monthly 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.
Good things come in small packages: Garrett’s story
After he was born we spent a little over a week in the NICU. We were home for a week before rushing to the ER, where he was admitted to the PICU for six weeks.
Garrett continues to beat out the odds
Garrett needs frequent suctioning. He aspirates, so we are very careful about the tastes he takes by mouth. We have nebs on hand at all times and give them at the first sign of respiratory illness. We have our PHS Respiratory Therapist, Carrie, in-home nursing to help us monitor him and his pulmonologist is updated weekly, so any change in his health status is quickly addressed.
We are very proud of how far Garrett has come! We worked with PHS and our team of health care professionals to take him from being on a ventilator 24/7 to only needing it while sleeping. PHS Dietitian, Teresa helped Garrett transition from not consuming anything orally to taking small tastes of yogurt, pudding, and apple sauce. The majority of his nutrition is a blended diet through his G-tube, which he handles so well that we have been able to decrease the medication he takes for reflux. He is walking great. His speech was delayed, but he has always worked hard to communicate – first with sign language, and now, most people can understand just about everything he says! He is very smart – he knows his colors, numbers, letters… I could go on and on!!
Garrett’s favorite things
Garrett loves to play and watch sports – baseball, basketball and golf are his favorite right now. He plays on a Miracle baseball team in the summertime. (Garrett’s PHS respiratory therapist, Carrie had a great time cheering him on at his game this past summer.) He also likes to read books, sing, play with Play-Doh, blow bubbles, go to the park, and wrestle with his older sister.
Left to right: Garrett with his mom, dad and older sister; Garrett walking off the field at the Miracle game after a great inning; Garret with PHS RT Carrie.
The difference of homecare
We first learned about PHS by a social worker at the hospital. When Garrett was in the hospital, our goal was to get him home as quickly as possible, PHS helped make that dream a reality. Being able to care for Garrett at home means more time together as a family. My husband and I would have to split time between the hospital with Garrett and at home with our daughter. It also allows us to give him more opportunities to be out in the community, so that he can develop socially as well as physically and cognitively.
If you’d like your child to be featured in our monthly Patient Spotlight on the PHS Thrive Blog, just send an email to dmakerson@pediatrichomeservice.com and we’ll touch base with you for more information and pictures of your All-Star.
PHS volunteers had a blast last Friday, September 28 at Aria at the Jeune Lune celebrating Faith’s Lodge. The event marked the 5th year of rocking out for a good cause. With performances by Eric Hutchinson and Martin Zeller, guests enjoyed food from Crave, henna tattoos and rockin’ hair do’s from the stylists at Simonson’s.
Faith’s Lodge provides a place where parents and families facing the serious illness or loss of a child can retreat to reflect on the past, renew strength for the present and build hope for the future.
The PHS volunteers enjoying the night raising money and rocking out to Eric Hutchinson and Martin Zeller.
Families had fun at this free event taking pictures in the photo booth, getting full face painting, crazy hair do’s and playing with different musical instruments from around the globe. In addition to the fun stations the entertainment couldn’t be beat, Beachcomber Bob, a performance from Circus Manduhai, muscial group Bazillions and Okee Dokee Brothers.
PHS employees are pretty lucky to work for an organization that puts such importance on giving back and volunteering time. We get fantastic opportunities to be out in the community supporting like-minded organizations that support medically-fragile kids and their families. This week, Sharing Care volunteers had a great time helping out at the Coleberry Golf Tournament benefiting HopeKids MN! We spent the morning helping out with the kids golf clinic on the driving range and the putting green. In the evening we had fun driving the golf carts around the course taking down tents once the tournament was over. But a word to the wise, watch out for the poles when taking down tents, PHS volunteer, Bruce, will tell you that they don’t feel too good on your head. You can check out all of the pictures on the PHS Facebook page.
HopeKids MN is an organization that provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. Have you heard of HopeKids? Do your kids participate in their events? If so, what has your favorite been? We’d love to hear from you.
August 5–11 is Home Parenteral Nutrition (HPN) Awareness Week.With the goal of demystifying HPN and helping others better understand what HPN patients go though on a daily basis, the Oley Foundation has come up with plenty of ways you can get involved throughout the week and we’d like to share some of them with you!
The awareness we are able to spread as a group over the week will be largely up to you! You are the heart of the effort, and your experiences are key in creating understanding and hope in others. Contact your local media, post your story on the PHS Facebook page, upload a YouTube video, or send us your story via email (dmakerson@pediatrichomeservice.com) so we can post it in our blog and share with all the PHS followers—the more we all work together to spread the word, the larger an impact we can have.
Be sure to use HPN Awareness Week logo as Facebook profile photo; and join in on any discussions!
Sunday, Awareness:
explain what home parenteral nutrition is and how it has helped you. Tell your family, friends and co-workers
distribute and wear HPN Awareness Week buttons (available through Oley)
post on Web sites, blogs
Monday, Outreach:
share Oley materials with someone with a similar diagnosis
Tuesday, Advocacy:
send letters to elected officials; write to local media (samples at oley.org)
write a letter to the editor
Wednesday, Education:
how to travel with HPN, share some facts about HPN and/or Oley, etc.
write a letter to the editor
Thursday, Networking:
explain how knowing others on HPN has helped you, introduce Oley (and RCs), how to connect to others
share information packets with doctors, other organizations, etc. (available through Oley)
Third item of embedded list
Friday, Understanding:
address misconceptions (HPN can be administered at home, can help one feel stronger, etc.)
letter to editor
talk to family, friends, co-workers
Saturday, Awareness:
share a positive experience you have experienced because of HPN, and what made it positive
Please use the HPN Awareness Week logo whenever it’s appropriate. It will be great if everyone could use it as a Facebook profile photos August 5–11! Use it on your blogs and e-mails.
If you have Facebook, Twitter, etc., please share this message with fellow HPNers.
PHS’s volunteerism program, Sharing Care, has been busy with some fun activities in the past few weeks and we’re excited to be able to share them with you all.
iCAN Hoop
Last Sunday, November 13th, Sharing Care volunteers made the trek out to Excelsior to play basketball with some extremely talented kids. The basketball clinics are put on by West Metro Miracle Athletics (they also has a baseball league in the summer) provides super special children in the west metro, with ANY cognitive and/or physical challenges an opportunity to play basketball and baseball. PHSers had so much fun practicing dribbling, shooting and passing with the kids. Former U of M Gopher basketball player Jeff Hagen was also on hand to teach the kids some moves and the importance to focus and dedication not only on the court but also in the classroom. You can check out the photos in the video slideshow below or by visiting our facebook page here.
Memorial Blood Centers- Blood Drive
This year PHS decided to add a little competition to our blood drives; we now have ‘The Quick Draw’ traveling trophy that goes to the donor with the fastest donation time (SAFELY!!!) The new competition was a ton of fun yesterday and we’re already looking forward to our next drive. Thank you to Memorial Blood Centers for making sure our competition is fun, yet still safe.
Does your child play in the iCAN hoop league? Or do you have any ideas for other fun volunteer events for the Sharing Care group? Leave us a comment, we’d love to hear from you!
PHS understands how stressful it can be when a piece of equipment isn’t working properly, and we want to help resolve any issues as soon as possible for you. So, once a month, PHS Respiratory Therapist, John Sheahan will post a tip on how to troubleshoot a common error with a piece of equipment.
Today’s post is the second in a series that focuses on food pumps. We frequently receive calls from families for troubleshooting the food pump. In this second segment we will focus on what to do if the Infinity food pump door breaks.
There are two types of Infinity food pumps, the Infinity Teal and the Infinity Orange, and both have the potential of the door latch that connects to the pumps inside holder breaking. To prevent this from happening always press the latch in with your thumb before opening and closing the food pump door. If the door latch does break however follow these steps:
Close the Infinity food pump door and secure it tightly with either a hair band or a rubber band.
The food pump will run as long as the food pump door is closed tightly.
Call PHS at 651-642-1825 and report the problem. We will send you a replacement door.
When you receive the new door:
Open the broken food pump door away from the food pumps main body.
Firmly hold pump and door in BOTH hands.
Quickly snap the door away from pump.
Replace with new door by inserting the replacement food pump door latch into the inside holder.
Gently snap door into place.
Do NOT force the door closed.
See the graphic below for a visual on how to remove and attach a door. For even more help with your EntraLite® Infinity food pump watch this video from PHS IV nurse Gail as she walks you through common errors with the pump and how to solve them.
John Sheahan, RRT-NPS, LRT is a Licensed Respiratory Therapist at PHS and would love to hear from you if you have a tip that you’ve found helps when working with your equipment, or have an idea for a Troubleshooting Tip post. Share your tip or idea through a comment here or an email to John at jcsheahan@pediatrichomeservice.com.
PHS understands how stressful it can be when a piece of equipment isn’t working properly, and we want to help resolve any issues as soon as possible for you. So, once a month, PHS Respiratory Therapist, John Sheahan will post a tip on how to troubleshoot a common error with a piece of equipment.
Today’s post is the first in a series that will focus on food pumps. We frequently receive calls from families for troubleshooting the food pump. In this first segment we will focus on blending the formula and priming your feeding bag.
Formula
If you have a powdered formula it is best to mix it well in a blender. This is to make sure all of the powdered formula granules, that can cause alarms, are well dissolved. Watch a video from PHS Dietitian Gwen, on how to properly mix your formula to avoid granules here.
At PHS we recommend mixing powdered formula with cold water unless the formula manufacturer instructions recommend using a different temperature.
After blending, formula may be frothy, so let it sit for 15 minutes.
Pour breast milk or formula into feeding bag and remove air from filled feeding bag by gently pushing down until fluid rises into neck of bag, as pictured above. Replace cap before lifting bag. Note: some feeding bags may different than the one pictured.
Priming feeding bag and tubing
If you are using an EnteraLite Infinity food pump (orange or teal) you will have to prime the feeding bag tubing by completing the following steps.
Push in latch and open Food Pump door.
Hook U-shaped tubing around pump wheel. Gently stretch plastic unit away from pump wheel and press down into place.
Push in latch and close Food Pump door completely
Hold down ON/OFF keypad button until Food Pump beeps and turns ON. Food Pump then does a self-check.
The word RATE and a number will show in display window when Food Pump finishes self-check.
Remove cover from Feeding Bag Adapter at end of Feeding Bag Tubing. Place Feeding Bag Adapter into clean container.
Hold Feeding Bag upside down. At the same time, hold down PRIME keypad button until Formula or Breast Milk comes out of Feeding Bag Adapter. NOTE! PRIME button MUST be held down during the entire priming process.
Replace cover on end of Feeding Bag Adapter.
John Sheahan, RRT-NPS, LRT is a Licensed Respiratory Therapist at PHS and would love to hear from you if you have a tip that you’ve found helps when working with your equipment, or have an idea for a Troubleshooting Tip post. Share your tip or idea through a comment here or an email to John at jcsheahan@pediatrichomeservice.com.
In 2008, PHS created Sharing Care to extend our vision to include those in need in our local community. We designed the program to align our charitable giving with our mission to take care of the child and to provide PHS employees with the opportunity to donate time to programs and events in the community that are directly associated with serving medically-fragile and underprivileged children.
What’s for dinner? Breakfast! Cooking for kids at Ronald McDonald House
PHS Sharing Care volunteers joined the Cook for Kids program at Ronald McDonald House (RMDH) in Minneapolis on August 17. Many PHS families call RMDH home while their children are in the hospital, so we’re proud to be part of this event. Volunteers John, Miguel, Todd, Janelle, Dana, and Beth cooked ‘Breakfast for Dinner’ for families staying at RMDH. See even more photos from event on the PHS facebook page here.
Sharing Care volunteers at Cook for Kids- Ronald McDonald House
Happy kids are hopeful kids
Sharing Care volunteers participated in the 5th Annual HopeDay Festival, hosted by HopeKids! MN on September 11. We had a blast with all the kids and their families painting faces and playing bean bag toss. This festival marks the end of this HopeKids season and is the organization’s largest event of the year.This year’s festival attendance topped out at around 1,000 HopeKids families, approximately 400 student athletes and an additional 50 volunteers. The festival had fun events such as BMX bike show, blow up jumpers, dunk tank, pony rides, basketball, putt-putt golf and so much more. Thank you to HopeKids for letting Sharing Care be a part of the festivities. See below for a video of the event.
PHS help’s restore the hope at Faith’s Lodge
After a devastating summer storm destroyed most of the 80 acre the grounds of Faith’s Lodge near Danbury, Wisconsin, they are picking up the pieces and moving forward. Faith’s Lodge provides a very needed respite and recovery for many PHS families living with a chronically ill child, or those dealing with the loss of a child, so PHS and many other organizations and families helped “Restore the Hope” with a tree-planting open house on September 17. Sharing Care purchased trees and six volunteers took the day to head over to Faith’s Lodge to get them in the ground. The day also included a pancake breakfast and opening ceremonies with founders Mark and Susan Lacek. We’re eager to see the trees thrive at Faith’s Lodge. See even more photos from event on the PHS facebook page here.
Sharing Care volunteers with Susan Lacek, founder of Faith's Lodge, and her daughters, at the tree planting open house
We are always looking to support new fabulous organization that support medically-fragile children, so if you have any ideas, simply submit a comment here. We’d love to hear from you!
As many of you may know, the company that makes the Bivona trach tubes came out with new neonatal and pediatric trach tubes last year. Due to some design issues that we, nor our patients, liked, PHS chose not to stock these new trachs. Bivona hit the drawing board and redesigned these trachs once again to address all of our concerns.
Beginning August 1st, PHS will carry the updated Bivona trachs in the neonatal and pediatric sizes. There are slight changes to the new trach that will affect how you clean the item, so please reference picture below.
To save your healthcare dollars be sure to use any trachs that you currently have in rotation until they are ready to be thrown out, before using your new Bivona trach.
If you have any questions about your new trach please feel free to contact your PHS respiratory therapist at 651-642-1825.
The Mall of America was taken over on Wednesday by Sharing Care volunteers and the kids from the Oley Foundation. Oley’s national conference was held in Bloomington, MN this year and PHS knew we had to be involved. We arranged for the kids to come to the Mall of America where we split into friendly (yet competitive) teams. Our mission was to take photos throughout the mall with various predetermined objects for points. The team with the most points at the end is the winner! We wrapped up the day with a trip to Sea Life MN before heading back to the conference.
PHSers had so much fun spending the day with the Oley kids! Check out some of our scavenger hunt pictures in the video below.
The Oley foundation was founded in 1983 by Lyn Howard, MD, and her patient Clarence “Oley”Oldenburg. The Oley Foundation is a resource for children and adults dependent upon home parenteral nutrition (HPN) where solutions are infused directly into the bloodstream via IV, and enteral nutrition (HEN) where formula is delivered by tube into the stomach or intestinal tract.
