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.
______________________
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.
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.
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.
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.
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.
An oxygen concentrator is a machine that allows you to deliver the exact amount of oxygen your doctor has prescribed for your patient or child without the hassle of having to change tanks. The machine does this by filtering out nitrogen and other gasses from the air to create a higher amount of oxygen.
Of course, with any machine, there can be problems. So if there is ever a problem with the oxygen concentrator always use a tank to make sure you are giving the proper amount of oxygen before going on to these trouble shooting steps.
If you get an alarm check:
that the power cord is plugged into a working wall outlet.
that the ball on the flow meter is not all the way up or all the way down.
that the intake filter is not clogged with lint. If so, replace with clean filter.
that the machine’s air intake area is not blocked by walls, furniture, or drapes.
that the oxygen tubing is not kinked or blocked.
If the alarm does not stop:
Disconnect tubing and bubbler if you are using one.
Turn machine off if still giving alarm.
Look for one of the above causes of the alarm.
Wait ten minutes for the machine to cool down.
Turn machine back on and adjust as needed.
Call PHS at 651-642-1825 if machine is still not working.
Always make sure you have enough oxygen tanks in case of power outages and equipment failure. Your PHS clinician will help you calculate the right amount.
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.
If your child uses a feeding tube, you know it helps conveniently provide necessary nutrition and sometimes medications. But not when it’s clogged. Clogged feeding tubes interrupt important feedings and can cause frustration and discomfort. To keep lines clear, PHS and many of our families use the Clog Zapper .
Clog Zapper is convenient and easy to use. In this video, PHS Dietician Janelle Peterson, RD, LD, CNSD, takes you step-by-step through using the product to keep your child on track and avoid replacing feeding tubes.
Check out Charles Dias, a PHS kid, starting this year’s Juvenile Arthritis March (JAM). You’ll see he sounded an empty air horn so he ends up yelling ‘GO’ into the microphone instead!
This wasn’t just another Saturday at the Mall of America. Groups dressed as doctors, Thing 1 and Thing 2 (Dr. Seuss characters), a team in camouflage “hunting” for a cure, and Charlie’s Angels, walked the mall, cheering each other on, collecting candy while enjoying music.
This was the annual JAM, held Saturday, March 5. This year’s event was a huge success, with more participants and funds raised than ever before. All funds go the Arthritis Foundation of the Upper Midwest, targeting research for juvenile arthritis. Charles was one of the top three fundraisers.
PHS’s Sharing Care volunteers, Lisa, Nick, Michael, Karen, Dana, Janelle and her three sons, were proud to join the march to support the Arthritis Foundation of the Upper Midwest. Charlie’s Angels were one of the most motivating teams on the route, loudly cheering on all the walkers. The event culminated with a performance by the Minnesota music group, Koo Koo Kanga Roo.
PHS kids are amazing, including Charles Dias, who is this year’s Honorary Chairperson of the Juvenile Arthritis March (JAM). For the sixth consecutive year, Charles and his family will walk in JAM at the Mall of America. This year’s event is March 5. JAM helps support the 6,000 kids in Minnesota who have arthritis.
Top JAM fundraiser
Charles, who just celebrated his ninth birthday, has consistently been JAM’s top fundraiser.
Again this year, PHS Nutrition Specialist Janelle Peterson, RD, LD, CNSD, and her own sons, plus PHS Marketing and Sales Program Coordinator Dana Akerson will walk with Charles’ team, and PHS will sponsor his team of “Charlie’s Angels.”
Janelle says: “JAM is an excellent event. It’s great for younger kids to see older children who also have juvenile arthritis thriving and walking. All the funds raised go to camp scholarships, research and other programs to help kids like Charles thrive.”
Charles story
“When he was two years old, Charles had unexplained fevers, rashes, and joint pain, and was in and out of consciousness. He spent 37 days in the hospital,” Charles’ mom, Louise, recalls. “He was finally diagnosed with systematic Juvenile Rheumatoid Arthritis, or JRA. We were shocked. Like other families, we had no idea a child could have arthritis.”
Charles is also orally averse, has Gastroesophageal Reflux Disease and several other conditions. PHS provides care for his feeding tube and other treatments.
For other children with juvenile arthritis, PHS IV Therapy nurses and Pharmacists work with physicians to manage pediatric arthritis. Care includes infusion steroid treatments, where a PHS nurse comes to the child’s home and provides therapy for the child while our on-site infusion pharmacy supplies steroid therapy.
“Through managed care, Charles is an active, energetic little boy. I love seeing him running around and playing. Helping care for him and joining his family for JAM has been pure joy,” Janelle says.
Do you participate in the JAM walk or know anyone who does? We’d love to hear your story. Feel like support Charles in his walk to fight against Juvenile Arthritis? Click here to support his team, Charlie’s Angels.
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.
