Here is part II of Lila’s story as written by mom, Aimee. We posted Part I of this story on Thursday, you can read that post here. Today, Aimee recalls the progression Lila made while in the hospital, and the journey from hospital to home.
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As much as we hoped and prayed, our little Lila wasn’t breathing when she was born. Her lungs were too underdeveloped and she needed a lot of support. The doctors had a hard time finding a breathing machine that worked for her. Their last attempt — a high-frequency jet ventilator — worked.
I don’t remember seeing Lila for the first time. I reached my hand in and touched her (thank God for pictures) but I couldn’t hold her. Once I was able to get out of bed and visit Lila’s room in the NICU, I just stared at her and put my hands on her tiny, fragile body and never wanted to leave. “Is she going to live?” That’s all I wanted to know, but the doctor couldn’t make that promise.
A few days later, Lila had stabilized and it was time for an ultrasound of her brain. Premature babies are at high risk of developing bleeding on the brain, so the NICU does the ultrasounds as a standard practice. On this day, we learned that Lila would not make it out of the hospital unscathed as a result of her prematurity and time in utero without amniotic fluid. She had developed some cystic areas on the ventricles of her brain and was diagnosed with Periventricular Leukomalacia (PVL), a type of brain injury that involves the death of small areas of brain tissue around the ventricles. We were told that PVL affects the motor abilities in children and often leads to a Cerebral Palsy diagnosis, however we were also encouraged by the hope that early intervention and therapies could give Lila a chance for a “normal” life.
With each passing day, Lila grew stronger. Finally on day 12 I was able to hold my baby girl for the first time. She was so tiny. The wires and tubes covered much of her head and face, but I could see her perfect little button nose, her sweetheart-shaped lips and her perfect almond eyes.
The days turned to weeks and the weeks to months. We celebrated every single milestone from Lila moving to an open-air crib to graduating from the NICU to the Infant Care Center and every moment in between. We made every effort to make the best of our time in the hospital, but grew weary from all of the fear and the scared nights, having to watch our daughter fight and endure with each breath, and unsure how to handle the unspeakable grief that our “perfect” child might have a different future from what we originally envisioned.
Lila’s due date passed and everyone was eager to get her home, yet she was still on oxygen and not taking enough from a bottle to grow without a feeding tube. After some back and forth, everyone decided it was time for Lila to go home, however she would continue to need oxygen and a feeding tube.
The next day, someone from Pediatric Home Service arrived to teach us how to use all of the equipment that Lila would be sent home with. I had stayed in the hospital with Lila the night before and was working on an hour or two of sleep and overwhelmed with the reality of finally taking our daughter home. As the PHS staffer went through instructions on how to use the oxygen tanks, the oxygen concentrator, the apnea monitor, and the feeding tube pump, I began to cry and doubt my abilities to handle the things the nurses had taken care of for so long. “What if I screwed something up? What if the equipment stops working?” The PHS staffer assured me that someone would be available to take my calls 24/7 and could even come to the house to check on things. She gave me the confidence I needed to do the job I was meant to do: be Lila’s mother.
After 92 days of bedrest and 69 days in the NICU, Lila finally came home on Nov. 21, one week after her original due date.
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.
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.
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.
Last month I discussed using a capnograph or ETCO2 monitor, as they are sometimes called, to patients with tracheostomy tubes. This month I would like to talk about using a capnograph to patients without a tracheostomy tube, using a nasal cannula.
The Novametrix Capnogard ETCO2 Monitor is the only capnograph PHS carries that will measure exhaled carbon dioxide (ETCO2) levels using a nasal cannula. Be sure to use the step-by-step instructions at the end of this post to setup and calibrate the monitor before use.
Troubleshooting
If the exhaled carbon dioxide, or ETCO2, results seem inaccurate:
Make sure the pump is on (there will be a small pump icon displayed in the lower part of the LED screen and the monitor will make a pumping noise).
Make sure the patient cable is tight and not damaged.
If you need to disconnect and reconnect the patient cable be sure to recalibrate the monitor.
Check the Sample Airway Adapter for cracks or water spots.
Check tubing and cannula for kinks.
Check for excessive humidity in the Dehumidifier Tube – and change if necessary.
Check nasal cannula prongs to make sure they are not clogged – clean or change if necessary.
If these steps do not correct the problem call PHS.
Using ETCO2 monitor with a Nasal Cannula
Make sure Sampling Airway Adapter windows are clean, dry and not cracked.
Snap Sampling Airway Adapter to child’s cable.
Connect sampling tubing from adapter to inlet port on the front of monitor.
If instructed by your PHS Clinician, connect Dehumidifier Tube to Sampling Airway Adapter.
Connect appropriate CO2 Nasal Cannula to Sampling Airway Adapter.
Press POWER key to turn monitor ON.
Make sure HIGH/LOW ETCO2 and HIGH/LOW RESPIRATORY RATE alarm parameters are correct.
When Capnogard displays “ERASE STORED TRENDS?”, press YES to erase stored data. NOTE! If doing an overnight study, DO NOT erase the trends once study begins.
Make sure sampling pump is turned ON. NOTE! A pump icon displays on screen. If you do not see this pump icon, do the following:
Press MENU.
Press PUMP.
Press ON.
If needed, calibrate the sensor as instructed. Calibrate if sampling method has changed or “ADAPTER CAL?” appears on display. Read the Calibrating the Sensor section below.
Place appropriate CO2 Nasal Cannula on child.
Watch your child’s respiratory rate and ETCO2 value. Record these values in the child’s chart or on the log sheet provided.
Calibrating the Sensor
Press CAL key. The message “PLACE ON ADAPTER IN ROOM AIR” displays.
Place sensor and adapter away from all CO2 sources.
Press START key. The “TIME REMAINING” number counts down and main menu displays.
At the end of countdown, remove Patient Airway Adapter and place Capnostat on “0” rear cell. Wait for the countdown.
When “PLACE REFERENCE CELL” message displays, move to (front) “REF” cell.
When “CALIBRATION VERIFIED” displays, remove from reference cell and place Patient Airway Adapter on Capnostat.
Press CAL key.
Press START key. Wait for the countdown.
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.
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.
Capnographs or ETCO2 monitors as they are sometimes called are extremely valuable machines for monitoring your patient or child’s carbon dioxide as they breathe. Of course with any machine there can be problems. This month I will focus on a few troubleshooting steps that will insure you always getting the most accurate readings when using a capnograph to trach.
Novametrix Capnogard ETCO2 Monitor
Novametrix Capnogard ETCO2 Monitor
When using the Novametrix Capnogard monitor be sure to always calibrate before use by following the step-by-step instructions below:
Calibrating the Sensor
Press CAL key. The message “PLACE ON ADAPTER IN ROOM AIR” displays.
Place sensor and adapter away from all CO2 sources.
Press START key. The “TIME REMAINING” number counts down and main menu displays.
At the end of countdown, remove Patient Airway Adapter and place Capnostat on “0” rear cell. Wait for the countdown.
When “PLACE REFERENCE CELL” message displays, move to (front) “REF” cell.
When “CALIBRATION VERIFIED” displays, remove from reference cell and place Patient Airway Adapter on Capnostat.
Press CAL key.
Press START key. Wait for the countdown.
Tidal Wave Novametrix Capnograph
TIDAL WAVE Novametrix Monitor
When using the TIDAL WAVE Novametrix monitor be sure to always zero before use by following the step-by-step instructions below:
Zeroing a new patient airway adapter
Attach a new patient airway adapter to the TIDAL WAVE patient cable.
Press POWER button to turn machine ON.
Make sure light below NEO key is OFF.
Wait for the sensor on the patient cable to warm up. NOTE! The text SENSOR WARMING displays on screen.
Press and hold NEO key until the ZERO menu screen displays.
Press the PAGE button to “zero” the adapter. NOTE! Pressing this button starts a process that allows the machine to read your child’s carbon dioxide levels accurately. This process is occurring when the machine’s screen shows a numerical countdown.
When the zero process is complete, the machine automatically switches to monitoring mode.
You can now use the machine as ordered by your child’s doctor.
Troubleshooting tips for your TIDAL WAVE monitor
If the carbon dioxide, or ETCO2, results seem inaccurate (for either monitor):
Make sure patient cable is tight and not damaged.
Check Patient Airway Adapter for cracks or water spots.
If you need to disconnect and reattach the patient cable (Novametrics Capnograph only) or change the Patient Airway Adapter recalibrate or Zero the machine.
If ETCO2 results are still low check for leak around the trach. This can give a false low reading.
If these steps do not correct the problem call PHS.
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.
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.
Children discover the world through play, so adaptive playgrounds are the perfect place to spend summer days and evenings. Plus, it’s just good, affordable fun.
Your kids’ favorite playgrounds?
PHS found a few adaptive playgrounds in the Twin Cities and Minnesota, yet we’d like to hear about others. Do you have a favorite local park or neighborhood playground? What features does your child enjoy? Which adaptive playgrounds do you recommend?
All public playgrounds are required by law to have at least some activities for people with disabilities. This may be a wheelchair-accessible ramp to reach the play area or harnesses or wheelchair decks on special swings. Some parks have modified digging and rocking toys, non-plastic slides (plastic can affect hearing aids due to static electricity), hand railings, and different colors on multilevel sets to help children with vision issues avoid falls.
Frankly, it’s difficult to find the exact adaptive features at individual playgrounds until you visit the area, so we’d love to have you share your experiences.
Adaptive playgrounds we found
Meanwhile, here are the adaptive playgrounds we found, alphabetically by location:
Your child’s food pump alarm is going off. Again. What do the alarms mean, and how can you most efficiently keep food pumps clean and operating smoothly?
Infusion Nursing Coordinator Gail Fields, RN, takes you through basic cleaning steps, helpful tips, recognizing pump alarms, and how to turn down the alarm volume on your child’s food pump. We only advise making the alarm quieter for little ones who startle easily.
Food pump door replacement, battery info
Gail also shows you how to replace the door on your child’s food pump and explains details of the food pump battery, including how long it should hold a charge, troubleshooting tips, and charging cable options.
Remember, PHS clinicians are available 24 hours a day/7 days a week to help with your child’s food pump: 651-642-1825.
How do you clean and maintain your food pump? Any tips to share? We welcome your input.
Here is part II of Lila’s story as written by mom, Aimee. We posted Part I of this story on Thursday, you can read that post here. Today, Aimee recalls the progression Lila made while in the hospital, and the journey from hospital to home.
Lila’s due date passed and everyone was eager to get her home, yet she was still on oxygen and not taking enough from a bottle to grow without a feeding tube. After some back and forth, everyone decided it was time for Lila to go home, however she would continue to need oxygen and a feeding tube.
