Tube feeding’ is a term that at times may cast a negative light upon an already complex medical situation. However, what is not commonly known are the benefits a tube feeding can provide a growing child. By providing nutrition through the use of a feeding tube, a child that may not be able to obtain adequate or any nutrition by mouth would still be able to grow, thrive, and develop.
PHS is excited to be celebrating this awareness week and wanted to share with you some resources that our Dietitians pulled together. The links below have information for adults and kids alike. Do you know of any other resources? We’d love for you to leave us a comment here to keep growing our list of resources.
Sharing Care volunteers spent Wednesday night at the Ronald McDonald House in Minneapolis. We had the pleasure of participating in their Cook for Kids program, where volunteers buy ingredients and prepare dinner for the families staying at the Ronald McDonald House. The facility, which offers 8,500 square feet including:
16 private rooms with bedrooms and showers
In-room Internet, TV/DVD players, phone with hospital extensions
Full kitchen with snacks, beverages and cooking facilities
Laundry facilities
Living room and lounge space with a TV
A quiet space, computer lab with internet access
Exercise facilities
Outside patio
It truly is a beautiful facility that offers the guests some of the comforts of home, all located right inside Children’s Hospital.
Clockwise starting in upper left: Sara and Jodi serving; Claudia enjoying some of the feast; the big group: (left to right) Sharon, Sara, Suzie, Janelle, Jodi, Dana, Claudia; and Suzie with her beautiful pancakes.
We had Suzie, Jodi, Sara, Janelle, Sharon, Claudia and Dana all working together to churn out a menu of Breakfast for Dinner ( a big hit the last time around, so we figured if it’s not broken, why fix it) the following:
We scrambled 242 eggs
Baked 180 slices of bacon
Heated up 144 turkey sausage links
Flipped 120 pancakes
Chopped 6 cantaloupes, 24 bananas and a whole large package of grapes
All-in-all we fed 86 people and had a blast doing it. We also received a ‘thank you card’ from one family immediately following the meal.
You can check out all of the pictures on the PHS facebook page here.
Joe’Von is like most kids his age
And that’s what makes him remarkable.
He likes to watch cartoons, play in the yard and pick on his twin sister. In that much, at least, he’s a fairly typical preschooler. You wouldn’t have imagined it, though, had you met him the day he was born.
Joe’Von came into this world at 28 weeks and with short bowel syndrome, which means he didn’t have enough intestinal length to properly absorb nutrients. Doctors believed he’d never eat like the rest of us. In other words, that he wouldn’t be able to sustain himself with food.
Couldn’t eat or even look at pictures of food
Joe’Von’s aversion to eating kept him not only from the kitchen table, but also from being able to watch people eating on television or looking at photos of food in magazines. It also meant TPN and g-tube feeding directly into of his stomach. Long term, that could mean liver failure.
Out of the hospital so he can grow up at home
PHS private-duty nurses, infusion therapists, dietitians and other highly trained in-home caregivers have given Joe’Von the opportunity to thrive where’s he’s most comfortable—at home.
So far, he’s doing great. With PHS nursing care 12 hours a day, six days a week, Joe’Von is slowly being weaned off TPN. He’s learned to walk, run and play, and even dances and does karate. He’s gaining weight and beginning to experiment with food—putting grapes in his mouth, though not yet eating them. It is hoped, however, that he’ll eat on his own someday and grow up like any other kid.
PHS is excited to have just wrapped up our newest TV commercial too, check it out! It’s so important for families to know they have a choice in their homecare company and PHS is always here to help bring your child home and keep them home. Given the choice, kids will always choose to thrive, and PHS makes that possible.
Have you seen the TV commercial air yet? What do you think?
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 posts a tip on how to troubleshoot a common error with a piece of equipment.
Continuing in our series of food pump troubleshooting tips this month we will discuss ‘No Flow In’ and ‘No Flow Out’ alarm messages on the Infinity Orange and Teal pumps.
The first thing we need to understand is what each of these alarms is really saying.
A No Flow In alarm is telling us that formula or breast milk is not moving easily between the feeding bag and the food pump.
A No Flow Out alarm is telling us that formula or breast milk is not moving easily between the food pump and the child’s stomach.
If you get a No Flow In alarm do the following:
Straighten out twists or bends in the feeding bag tubing.
Empty formula or breast milk from feeding bag into clean container.
Flush feeding bag and feeding bag tubing with warm water.
Pour formula or breast milk back into feeding bag.
Remove air from feeding bag and feeding bag tubing.
Remove plastic unit and clean the three sensors using cotton swab and water.
Replace feeding bag with new one if needed.
If you get a No Flow Out alarm do the following:
Straighten out twists or bends in the feeding bag tubing.
Empty formula or breast milk from feeding bag into clean container.
Flush feeding bag and feeding bag tubing with warm water.
Pour formula or breast milk back into feeding bag.
Remove air from feeding bag and feeding bag tubing.
Remove plastic unit and clean the three sensors using cotton swab and water.
Use syringe to flush child’s feeding tube with warm water to be sure feeding tube is not clogged.
Replace feeding bag with new one if needed.
NOTE: If there is a clamp on the G-tube be sure to open first and try to resume feeding.
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 the month of November we celebrate National Family Caregiver Month, (did you know you had a month dedicated to celebrating you?!) Well, we at PHS want to thank you for all you do and we think you deserve more fanfare than just a celebratory facebook post. So we went out to a couple PHS family homes, sat down with two moms and asked questions like “how are you doing?”, “what’s your story?”, and “what does it mean to you to be a family caregiver?” What we ended up with was some fantastic insight into the joy, the stress, and the fear that comes along with being a family caregiver for a medically-fragile child. Watch the videos below and join in on the conversation on our facebook page here.
Special thanks to Deb and Robin for letting us in your home and for sharing your child’s story as well as how their medical needs have changed your role from just parent, to also caregiver.
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Resources
In our interviews with Deb and Robin we asked about resources. “What resources have you come across that you wish you’d known about sooner, what resources haven’t you been able to find, is there something that organizations can do to make y our role as a family caregiver easier?”
Many of the resources available for caregivers are geared towards caring for aging parents, but few are focused on the care of a medically-fragile child. We’d love to hear from all you parents out there on any resources you’d like to share, or resources you’d love to come across. Maybe we can all help each other out a little more this holiday season.
Deb and Robin touched on ideas such as:
A message board for parents of medically-fragile children, where you could connect with other families in similar situations
The lack of financial resources for parents who need help with non-covered supply items
Do you have any others we can add to the list?
PHS is Thankful
I want to close today by once again just saying a simple ‘thank you’. Thank you for caring for your children, and thank you for letting all of us here help you do that. You are each truly amazing people. Wishing you all a very blessed and Happy Thanksgiving.
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.
We’re coming up on an especially needy time of year for families, yet many metro Minnesota area organizations, churches, and food shelves ensure that every family can give thanks over a traditional Thanksgiving meal.
Last year PHS had a list of 5 food shelves that families could contact for assistance, this year PHS’s Medical Social Worker, Monica Handlos has found even more resources to help families in need for the holiday season. Monica recommends contacting the United Way First Call for Help at 651-291-0211 if the list below doesn’t cover your area. 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.
Review these options and see which ones make the most sense for you. You may also call Monica at 651-789-9215 for help in applying to the programs if you’re having trouble.
Most meals include a roasted turkey and dressing (already cooked) along with raw potatoes for you to cook, canned vegetables, canned cranberries, rolls, butter, milk and pie.
Holiday Meals:
Thanksgiving Meals on Wheels
651.699.5404
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.
Cherokee Tavern
886 Smith Ave S, West St. Paul, MN 55118
Free Thanksgiving meal served at Noon and 1:30pm.
Transportation is available to those in need and meals may be delivered if needed. For tickets please call Neighbors, Inc 651.455.1508; St. Francis de Sales 651.228.1169, Neighborhood House 651.789.2564-Spanish or 651.789.2541-Hmong
Bierstube
651.773.5854
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 between 12-2:30pm.
Pepitos Mexican Restaurant
612.827.2928
4820 Chicago Ave, Minneapolis, MN 55417
Free Thanksgiving meal provided beginning at 10am.
Gethsemane Lutheran Church
952.935.1753
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
763.354.7826
11115 Hanson Blvd, NW, Coon Rapids, MN 55433
Free Thanksgiving Meal. Serves Anoka County. Please call church for details.
Food Baskets:
Christian Cupboard
651.738.2338
7380 Afton Road, Woodbury, MN 55125
Need to register in person on November 15th between 9-Noon. 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.
Family Pathways
651.464.2098
935 Lake St. S, Forest Lake, MN 55025
Holiday meal supplies are provided. Please call for an appointment. Will need to complete an application, show proof of address, and ID. Service area: Forest Lake, Scandia, Wyoming, and surrounding area.
North Suburban Emergency Assistance Response (NEAR)
763.533.2836
4803 Welcome Ave N, Crystal, MN 55429
Thanksgiving Baskets available to those eligible. Please call for an appointment Monday-Friday 9am-4:30pm.
Service area: New Hope, Crystal, Robbinsdale between 42nd Ave N and 62nd Ave N.
We understand it can be frustrating and at times, scary when there is an alarm sounding from a piece of equipment that you rely on to help care for your child. That’s why we are here to help with video how-to resources that will have your equipment back up and running in no time.
In the video below PHS Clinical Education Manager and Respiratory Therapist Bruce Estrem, BA, RRT-NPS, LRT shows families caregivers and other healthcare professionals a couple basic troubleshooting tips for a humidifier that is used to keep the airway warm and moist.
Heater Wire Alarm
Heater Wire Alarm will sound if pigtail is not connected or not working, or if the heater wire button is turned off. The heater wire consists of the pigtail and the wires that go into the tubing to keep the air warm.
Make sure the pigtail is connected to the wires in the tubing, if its not, your humidifier will give you the heater wire alarm. Resolve this by checking and securing the connection, if this does not solve the problem; replace the pigtail with the back-up in your yellow mesh bag.
*Note- please call PHS at 651-642-1825 to exchange your non-working pigtail for a new back-up that will be kept in your yellow mesh bag.
Make sure the heater wire button is turned on (button is on the unit) if it is not turned on you will get the connector alarm.
Temperature Alarm
Temperature alarm will sound if the heater is too hot or too cold.
First thing you want to do is make sure you have airflow going through the circuit.
If airflow is not the issue, the next step is to then take the temperature probe out at the elbow of the unit, wipe it down with an alcohol wipe and put back in place, you will want to do the same with the probe at the patient connection. That should resolve the temperature alarm
If these steps still do not resolve the temperature alarm, replace the non-working temperature probe with the back-up from your yellow mesh bag.
*Note- please call PHS at 651-642-1825 to exchange your non-working temperature probe for a new back-up that will be kept in your yellow mesh bag.
As always, if you have further questions or concerns, please don’t hesitate to contact PHS at 651-642-1825.
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.
We know that caring for a child with an IV in your home can be a daunting process. There’s always that fear of infection in the back of your mind. To help quell some of those fears PHS has created a program called 1•2•3 Infection Free!, the program walks you step-by-step through the process of keeping your child infection free each time you administer an infusion.
Watch the video below as PHS Infusion Nurse Susan Fitzsimmons, RN, CPN, BSN walks through the various components in the PHS 123 Infection Free Kit.
Infection is a risk every child with an IV catheter faces.
PHS created a new program to help you prevent dangerous IV catheter infections at home. The program
is called 1•2•3 Infection Free! and its materials explain:
Actions to take each and every time you or any caregiver works with your child’s IV catheter
Warning signs for infection at the IV catheter site or in the blood stream
Whom to contact if your child shows signs of infection
Materials included in the kit are:
Infection Prevention Methods Poster
An easy reminder of the most important steps for preventing an IV infection, with pictures on one side
and more detailed information on the other side
My Child’s IV Catheter Care Log
A list of infection warning signs for which to check every day and a guide for whom to contact about
different warning signs. Call us when you need more copies.
Emergency Information
A card to hang near your child’s bed or on the refrigerator with infection warning signs and the phone
numbers of whom to contact
Badge
A list of infection warning signs and contacts that is a perfect size for purse, pocket, diaper bag or
emergency kit
Have you used 1•2•3 Infection Free! Does it help you to remember the steps and keep your child infection free? We’d love to hear your feedback on the program.
Tube feeding’ is a term that at times may cast a negative light upon an already complex medical situation. However, what is not commonly known are the benefits a tube feeding can provide a growing child. By providing nutrition through the use of a feeding tube, a child that may not be able to obtain adequate or any nutrition by mouth would still be able to grow, thrive, and develop.
