Our main goal at PHS is to keep kids safe at home. In order for this to happen we have to ensure that medically-complex homecare patients are kept in mind as policies and laws change at the capitol. Not only are the cost savings immense when looking at homecare vs hospital based care, but our patients progress and heal best at home, with their families, pets, and friends, where they are most comfortable.
Posts Tagged ‘caring for kids with serious illnesses’
PHS is excited to announce that our Medical Director Roy Maynard, M.D., has joined the Spare Key Board of Directors. Dr. Maynard will provide insight and guidance to the nonprofit organization as it continues to assist families and expand its network.
Spare Key has been helping the community for the past 16 years by providing mortgage payments for families who have seriously ill or critically injured children in the hospital, to better ensure parents will be able to remain present and active in their children’s care.
With the parallels in mission, the partnership between Pediatric Home Service and Spare Key that has existed for 3 years will be made stronger with Dr. Maynard joining the board. PHS’s Sharing Care community outreach program has partnered with Spare Key through monetary donations, participation in their annual fundraiser, The Groove, and earlier this year with the fun and unique experience to ‘Pedal to the Max‘, pedaling a 10 man bike for 24 hours straight.
“PHS and Spare Key have always had a natural connection through their common goal – keeping families together,” said Dr. Maynard. “As more patients are receiving their medical care at home, I look forward to collaborating with other members of the board to expand the opportunities Spare Key has to serve families in the area.”
As the organization moves forward, and with the input of Dr. Maynard, it plans to adjust the eligibility guidelines to include patients who are being treated through homecare as well as those who are in the hospital.
It can be easy to get caught up in the festivities and excitement centered around this time of year. All of the countless errands, the parties, the cookies, and the presents to buy. But ultimately all of that leads to the most important part of the holiday season, spending time with your loved ones.
Thinking about our jobs here at Pediatric Home Service I am overcome with gratitude. I am grateful for the role we get to play in our families lives. Every single person in PHS from the warehouse, to the pharmacy, the administrative team, to the billers, play a role in safely getting medically-complex children out of the hospitals and at home with their family. This transition from hospital to home is a miracle every time that it happens, but I believe the holidays give everyone around here that little extra boost of motivation to get kids home in time for the special day. There is nothing like having everyone at home celebrating and making lifelong memories.
We understand this transition can be scary and overwhelming for our families and we want to thank you for putting your trust in PHS to be a part of your extended family on this journey. We recognize how special it is to have your child at home with you. And we feel blessed to be a part of that. Enjoy your holidays and know that your child’s safety and comfort is our #1 goal and we are never more than a phone call away. 24 hours a day, 7 days a week.
I know I speak for everyone at PHS when I say Merry Christmas, Happy Holidays and a very blessed New Year to each and everyone of you.
We’re coming up on an especially needy time of year for many families, yet many metro Minnesota area organizations, churches, and food shelves ensure that every family can give thanks over a traditional Thanksgiving meal.
PHS Medical Social Worker, Monica Handlos has compiled a larger list than ever before. Look through the options below, and if you have further questions or our resources don’t cover your area, Monica recommends contacting the United Way First Call for Help at 651-291-0211. Ask them for agencies or food shelves that are helping with Thanksgiving Meals or Baskets. They will ask for your zip code and give you a list of local agencies that might be able to help you out.
- Kierans Irish Pub
601 North 1st Avenue Minneapolis, MN 55403
Free Thanksgiving meal call for reservation. Free clothing closet also available on Thanksgiving day.
- Cherokee Tavern
886 Smith Ave S, West St. Paul, MN 55118
Free Thanksgiving meal served. Meals available for pick-up as well.
For tickets please call Neighbors, Inc 651.455.1508 before November 16th.
2670 E County Rd E, White Bear Lake, MN 55110 or 7121 10th St Oakdale, MN 55128.
Free Thanksgiving meal provided to anyone in need.
- Pepitos Mexican Restaurant
4820 Chicago Ave, Minneapolis, MN 55417
Free Thanksgiving meal provided beginning at 10am- 3pm.
- Gethsemane Lutheran Church
715 Minnetonka Mills Rd, Hopkins, MN 55343
Free Thanksgiving meal beginning at 1pm in Gethsemane Lutheran Fellowship Hall. Please make a reservation by November 23rd.
- Faith Lutheran Church of Coon Rapids
11115 Hanson Blvd, NW, Coon Rapids, MN 55433
Free Thanksgiving Meal. Serves Anoka County. Please call church for details.
- Marie Sandvik Center
1112 E Franklin Ave. Minneapolis, MN 55404
Free Thanksgiving Meal. Serves city of Minneapolis. Call for more details.
- Sharing and Caring Hands
525 N 7th St. Minneapolis, MN 55405
Free Thanksgiving Meal 10 am-12 pm. Serves Anoka, Carver, Dakota, Hennepin, Ramsey, Scott and Washington Counties. Call for more details.
- Union Gospel Mission
435 University Ave E. St. Paul, MN 55103
Free Thanksgiving Meal. Serves low income families, no reservations needed. Call for more details.
- Thanksgiving Meals on Wheels (no affiliation with Meals on Wheels)
They deliver Thanksgiving meals to families living within 45 miles of St. Paul. Call between 8:30-4pm to set up a delivery. They will need your address, zip code, and number of people who will be eating on Thanksgiving. Meals will be delivered between 8-11am on Thanksgiving and someone needs to be at home in order to sign for the delivery. The meal includes a roasted turkey and dressing (already cooked) along with raw potatoes, canned vegetables, canned cranberries, rolls, butter, milk, and pie for dessert.
- Christian Cupboard
7380 Afton Road, Woodbury, MN 55125
Need to register in person on before November 15. Bring id and proof of address such as a current utility bill. Children will also need a proof of ID such as a medical or social security card.
Area served includes, Woodbury, Maplewood south of I-94, Landfall, Oakdale.
- Volunteers Enlisted to Assist People (VEAP)
Food certificate or bag of groceries for those in need.
Bring photo ID, proof of address such as a current utility bill. Children will also need a proof of ID such as a medical or social security card.
Area served includes, Bloomington, Edina, Richfield, and South Minneapolis.
- North Suburban Emergency Assistance Response (NEAR)
4803 Welcome Ave N, Crystal, MN 55429
Thanksgiving Baskets available to NEAR clients. To register for the NEAR program call Tuesday or Thursday after 9 am and speak with Phyllis.
Service area: New Hope, Crystal, Robbinsdale between 42nd Ave N and 62nd Ave N.
They’re not fun for any child but they mean something much more serious to a family with a medically-fragile child. We’re talking about infections, even ones as simple as the common cold can mean potential hospitalization, new medications and a much longer time for recuperation. PHS wants to do all we can to help prevent illnesses from creeping into the lives of our patients and to keep them thriving at home.
Scrub a dub dub
Winter is on its way, everyone is so busy and with kids back in school its easy to forget how many germs we all come into contact with on a daily basis. 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, home and when out and about. Be sure to share this video with your friends and family as a fun reminder to ensure we all do what we can to stay germ and infection free this winter season.
Hand washing humor
To bring a little levity to the otherwise “sterile” (pun absolutely intended) topic, a couple PHS employees came up with a creative way to remind our staff to wash their hands as often as possible. Check out the fun below.
Step By Step Guide:
- Wash hands for at least 15-20 seconds (Sing the “Happy Birthday” song 2x)
- Turn off faucet with paper towel
- Dry hands with air dryer or clean paper towel
- Use paper towel to open bathroom door
- Use hand sanitizer between washing
- Avoid touching your face, eyes or nose
As a handy hand washing reminder to families, PHS created the Think ABC to Prevent the Spread of Infection poster, feel free to print it out or call 651-642-1825 and we’ll send you a copy to put by the sink in your bathroom or kitchen.
Sweet Martha’s cookies. All-you-can-drink milk. Everything to eat on a stick. Farm animals of all ages, shapes and sizes. Who doesn’t love the fair?
The great Minnesota get-together, the Minnesota State Fair, runs August 23 – September 3 this year. Planning to spend a day there can be daunting for any family, especially with a medically-fragile child who has special needs.
Pediatric Home Service wants to ensure your day at the fair goes as smoothly as possible. So we’ve compiled a list of helpful things to know for a family with a medically-fragile child. We want this to be a day you’ll 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. 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
Use the Fairgrounds map to help you find your way.
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.
4. 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=
5. 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? We’d love to see pictures from your fun day out and about. Share your pictures on the PHS facebook wall and tell us your favorite part of the day.
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.
The answer to that question is… EVERYTHING.
The reality that faces many parents of medically-fragile, technology-dependent children is one that is little known by the general public. On this week’s Mom Enough webcast PHS Medical Director, Dr. Roy Maynard shed’s light on the challenges and considerations these parents and their families face before and after discharge from the hospital.
Some of the “things to consider” that Dr. Maynard touches on throughout the interview are:
- Do you and your family have the capability to provide the level of care that your child needs at home?
- Are you going to be willing to go through all of the training to understand the your child’s illness, the different pieces of equipment, how they work and how to troubleshoot?
- Do you have trained family resources or community resources that can help you out in emergency situation if your in-home nursing misses a shift?
- How will your medically-fragile child affect your relationship with your other children? How do you find balance between you healthy and medically-fragile children?
- How will this impact finances? A lot of these children exhaust their private healthcare very quickly. The PHS Medical Social Work is a great resource for our families who need financial assistance.
- Your child’s stability- no child can go home from the hospital unless they are stable.
- Your house must have air and heat, a ventilated child will not tolerate overheating. Air conditioning is a luxury to many people, you need to be sure the environment you bring your child into is safe for their cares.
- Does your house have the proper electrical set-up for the equipment your child will be coming home with? Will you need to ground any outlets, or rewire to ensure consistent power?
- Many families have backup generators in the house in the event of an outage, will you need to get one of those?
- Your power company needs to be aware that you have a technology dependent child in the home, and in the event of an outage that your home needs to be made a priority.
- Are you comfortable with the idea of nurses in your home up to 24 hours a day 7 days a week?
These are only a few of the many, many considerations and challenges that face families bringing home a medically-fragile child from the hospital but it gives those out there without any exposure to this world, an idea of the world of homecare can be like. You can learn more about homecare on the Pediatric Home Service website, facebook page, or by listening to the full webcast.
One extremely important piece to remember in this situation is that families in these situations are never alone. PHS is here to help navigate the tricky healthcare waters. We provide services to keep children home, safe and thriving all while keeping families together. PHS has put together a list of things to consider before discharge to help families through the process to ensure they have covered as many of the bases as possible before going home.
Are you the parent of a technology-dependent, medically-fragile child? Does this sound familiar to you? What were some of your best resources when you first went home? What were some of the unexpected challenges?
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 (firstname.lastname@example.org) 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
- post on Inspire forum, Oley FB page
Tweet, twitter, and post—and get others involved.
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.
Create excitement for the week of August 5!
Wednesday June 20- Saturday June 23 were dedicated to all things SMA. The Twin Cities were lucky to be the hosts of the 2012 National Spinal Muscular Atrophy Conference. With over 1,100 attendees the conference was a great success and was jam packed with fun and learning, PHS was excited to be there every step of the way.
There were many sessions, events and activities keeping attended busy over the 4 day conference, including:
- 40 Vendors, a record number for the conference. PHS was happy to participate as a vendor discussing services, technology, equipment and cares for SMA patients.
- The first ever SMA Family and Research Dance Party! (The kids sure were exhausted the next day)
- 38 workshop sessions for SMA families and professionals.
- The Meet-N-Greet where families connected with one another at the very start of the conference.
- A Family Fun Fest with over 30 carnival games for all of the children.
- Over 200 SMA Researchers who attended the 16th Annual SMA Research Meeting, joined in the Researcher Relay Race where SMA Researchers raced in manual wheelchairs with some of the children.
- The Children’s Program, which allowed parents to attend workshop session and where over 250 children enjoyed activities, movies, games and craft projects.
- A Researcher Q and A session for parents to hear about the most up to date research news.
Believe it or not, the weekend was not only about fun. There was a lot of learning that took place as well. We recently received the link to all of the presentations that have been posted online thus far from the conference. So, if you weren’t able to attend, or if there was one workshop you couldn’t make it to, now is your chance to watch what you missed. Click here to be taken to the Families of SMA website where PDFs, PowerPoint presentations and videos of the sessions have been posted.
PHS understands what a whirlwind life becomes when preparing to leave the hospital with a medically-fragile child. We met with a few of our experts, PHS Medical Director, Dr. Roy Maynard and PHS family mom and Infusion nurse, Jill Wall, RN, BSN, CRNI as well as included input from the entire clinical team to compile a list of tips for families to consider when getting ready to leave the hospital. Once the process is in place for a patient to leave the hospital and they are stable and ready to go, things can move rather quickly. The tips below will help get you organized and ensure you have necessary information from the hospital staff before you leave, ensuring you won’t have to make extra phone calls to track down information later.
What to consider before leaving the hospital:
- All contact info on one piece of paper. Ask the hospital for one single piece of paper that has the contact information for your primary care doctor and all the different specialists who will be following your child after discharge, and when to call them. The hospital may give you individual cards, but a single sheet with all relevant contact information is much handier.
- Interview to find good a good fit. Interview both a DME company and nursing agency before making selections. Find a company you feel comfortable working with. If you know your child is chronically ill and will need long-term nursing care, be sure to ask the agency if they will stay with you over the long term.
- Train family/friends that will care for the child. Encourage family members and friends to go through hospital training to provide suitable backup when needed. Better yet, identify KEY people who will be in the home consistently staying up-to-date on the care your child needs and how to administer each care.
- Organize vaccinations. Make sure vaccinations are up-to-date before going home and ask for a copy of the schedule to keep in your personal records.
- Learn about your coverage. Learn to work within insurance limits or find other payment options. At-home insurance coverage will be different than in the hospital and there will likely be extra expenses not covered by insurance. Contact your insurance provider before discharge for specifics about in-home care for your plan.
- Learn as much as you can while in hospital. Build your confidence by spending as much time as possible, including overnights, with “care by parent” under hospital staff guidance at the hospital.
- Get as much sleep as possible the night before discharge. Although we mention spending overnights at the hospital in the point above, try to go home early the night before discharge and get a FULL, restful night’s sleep. Your child is safe in the hospital for one night and you will need and appreciate that uninterrupted night after bringing your child home.
- Adjust medication schedules to home schedule. If the doctor has not suggested it already, ask if medication/feeding schedules can be safely rearranged to simplify the workload at home (for example, could an infant on electrolyte supplementation go from 4x/day to 3x/day or 2x/day?). While still in the hospital ask to adjust the schedules to the way it will be done at home at least one week before discharge. This will give you and your child time to acclimate.
- Have your home set up prior to discharge. PHS helps families with high-tech patients sort through equipment and supplies so that you don’t come home to boxes full of unfamiliar products.
And lastly, never feel alone. PHS and the hospital staff are always there to help you through the process of transitioning to home. You can see a full list of tips like the ones above here, where we cover tips for you after you’ve arrived at home, as well as tips to reduce stress and strain on you, and your family. Do you have any other tips or thoughts that you’d like to add to the list? We know the families who have already been through the process are the real experts and we’d love to hear from you!