Sept 2015 Issue 5
Hasbro Children’s Hospital
The Pediatric Division of Rhode Island Hospital
Ventilator Integration Program
Edition
n
m
u
t
Au
VIP Newsletter
The State of the Program
Karen L. Daigle MD
Welcome back! To the fall season, to school, to those activities from which we take a break during the summer.
I am especially happy to hear weather forecasts for temperatures in the 70s during the day. As I look over the
previous editions of our newsletter, I note it is not unusual to include updates about changes to the program. Change is
my focus for this edition. If you have been in for a clinic visit since the beginning of April, you have witnessed our
transition to and struggles with a new electronic health record. We appreciate your patience as we learn this new
system and ask you the same questions more than once. Getting as much correct information in the record can only
help in the long run. On a day when my frustration with the new record is at a relatively low level, I can imagine how
useful some of its features will be. However, I haven’t any idea how long it will take for us, and the record, to be ready
for action…
The other, more notable, change to the program was Dr. Burke’s retirement. I trust that most of you are aware that he
retired from full time practice at the end of June. Dr. Burke was established with the VIP when I joined the team in
March, 2008. It took me some time to get used to his style of dashing in and out of clinic, trying to provide care to
children in 2 different offices at the same time. In a very short time, I came to appreciate the depth of his commitment
to his patients; I learned that it was worth the wait to talk with him about a problem because he always had insight
and we could develop a plan. I observed that many of you felt the same way and were willing to wait at the end of your
clinic visit until we could track him down. We wish him and his wonderful wife Patty the very best life has to offer.
“A kind heart is a fountain of gladness, making everything in its vicinity freshen into smiles.”
Washington Irving
As we go from the summer to fall season, many changes are taking place. The daily
routine is changing as children are going back to school. Whether your child is just starting
school for the first time, going to a new school or returning to the same school, making sure the
services required for an appropriate education takes much attention. I am hopeful that
everyone has had a smooth transition to the start of a great school year.
Sometime changes are not always something we plan, such as the recent change in
respiratory home care companies for some of the children in our program. Lincare recently
purchased both Vanguard in Rhode Island and Denmark in Massachusetts. We are working
with Lincare to assure that all of the children in our program receive the services and
equipment that they need. In general, there are several other respiratory care companies that
provide services to children in our program: New England Home Therapies (MA & RI), Apria
(MA & RI), Lifespan Home Medical (RI) and Absolute Respiratory Care (RI).
If you have any concerns for your child with either school or home services, please
contact me and we will work together to make these transitions as smooth as possible.
VIP Coordinator Jerilyn Devin RNP
What is Pediatric Dysphagia?
Susan M. Wright SLP
What does dysphagia mean?
Dysphagia is the medical term for difficulty with any step of the feeding process- from accepting foods and liquids into the mouth to
the entry of food/liquids into the stomach.
Dysphagia can occur at different stages in the swallowing process:



Oral phase – accepting, sucking, chewing, and moving food or liquid into the throat
Pharyngeal phase – starting the swallow, squeezing food down the throat, and closing off the airway to prevent food or liquid
from entering the airway (aspiration) or to prevent choking
Esophageal phase — relaxing and tightening the openings at the top and bottom of the feeding tube in
the throat (esophagus) and squeezing food through the esophagus into the stomach
What are some signs or symptoms of pediatric dysphagia?
Children with dysphagia can have a wide variety of symptoms. Not all signs and symptoms are present in every child.












arching or stiffening of the body during feeding/eating
breathing difficulties during and/or after feeding/eating
coughing, gagging and/or choking during or after swallowing
difficulty chewing
difficulty initiating a swallow
difficulty managing secretions
difficulty accepting different textures of food (e.g., only pureed foods or crunchy cereals)
frequent congestion, particularly after meals
frequent spitting up or vomiting
noisy or wet vocal quality noted during and after feeding/eating
recurring pneumonia and/or respiratory infections
weight loss or less than normal weight gain/growth
As a result, children may be at risk for:
 dehydration or poor nutrition
 aspiration (food or liquid entering the airway) or penetration
pneumonia or repeated upper respiratory infections that can lead to chronic lung disease
How is pediatric dysphagia diagnosed?
A Clinical Swallow Evaluation is typically the first step in diagnosing pediatric dysphagia. During the clinical swallow evaluation,
the speech pathologist may ask questions about your child's medical history, development, and symptoms




look at the strength, coordination and range of motion of the muscles involved in swallowing
observe your child eating/drinking to see posture, behavior, and oral movements during eating and drinking
perform special tests, if necessary, to evaluate swallowing, such as:
Modified Barium Swallow (MBS) – child eats or drinks food or liquid mixed with barium, which allows the swallowing
process to be viewed on an X-ray.
 Fiberoptic Endoscopic Evaluation of Swallowing (FEES) – a lighted scope is inserted through the nose, and the child's
swallow can be observed on a screen.
Breathing Exercises for Relaxation
Stacie Caddick-Dowty RRT, AE-C
As parents we all get frustrated on occasion. While we do our best not to show it, sometimes we
lose control of our ‘Fight or Flight’ mechanism. When we are anxious or upset our bodies tense
up and we tend to hold our breath or breathe with shallow choppy breaths. This can make
anxiety and frustration worse. One of the techniques you can use to help relax in a stressful
situation or even just a day that has utilized every last bit of patience, is called Diaphragmatic
Breathing.
This is the style of breathing that happens naturally when one is in a deep relaxed state such as
sleep or meditation, is widely used in styles of yoga, and even vocalists use it. Your diaphragm is
the large muscle separating your abdomen and your chest and when it contracts you draw air into
your lungs. To practice this style of breathing for relaxation concentrate on your abdomen and
inhale slowly through your nose for 5-10 seconds until your chest is full of air.
Slowly exhale with as much control as you can for about the same amount of time as your
inhalation. Repeat this 5-10 times. This won’t be easy to put into use at first , so practice during
restful periods so that when an episode occurs you are ready to put diaphragmatic breathing to use.
This method of relaxation can be used by anyone old enough to be taught, therefore you can
Marie Bianco VIP Parent Consultant
As summer comes to a close it's nice to look back at some of the things that went on over the past few
months. In June, the CNDC had its annual Dream Night @ Roger Williams Zoo which a lot of you
attended. I always enjoy seeing the children outside of clinic with family and friends just having fun. The
night was beautiful, no rain and not too hot. The giraffes were in an entertaining mood and I even saw a few
children hand feeding them. They seemed to enjoy all the company and liked posing for pictures. The
elephants are always a big hit and love to strut around always looking for hidden treats that they have to work
hard to find. I think one of the biggest hits is the camel ride. I was amazed to see all the kids in line to get up
on that huge animal for a ride. They were much braver than me. This summer one of our VIPs went to a
Taylor Swift Concert and got to go back stage and meet her. How exciting is that. Then of course , we had
that terrible storm that knocked down trees and left some communities without power for several days. That
morning when I got to my office on Prairie Ave it was in darkness but patients still continued to show up for
their appointments so we just sat with them in the waiting area holding flashlights. The kids played while
parents talked to each other about what had happened in their neighborhood that morning. We stayed like
that for about 90 minutes until the power came back on, then business as usual. By the time you read this the
children will all be back to school and we will start thinking about the holidays and what’s in store for us this
winter.
I wish you all a great Fall/Winter season and as always stay happy, healthy and safe.
We have developed an Emergency Care Plan with pictures to
assist in guiding the general steps taken during a respiratory
emergency. If you would like a full size copy, please let us
know.
Emergency Care Plan
• If your child is having trouble breathing:
Step1
• Check for other signs: fast breathing, working hard to breath, oxygen saturations
• Check to make sure tracheostomy tube is in place
• If the tube is not in place, put in a new tube of the same size.
Step2
• If you can’t replace it – try smaller size tube.
• If you can’t get a tube in the stoma, but your child is breathing – give extra oxygen over open
stoma or nose and mouth and call 911
• If the tube is in place
• Check that the tube is clear
• Suction tracheostomy tube with suction catheter to premeasured depth
Step3
Step4
• If the suction tube does not pass, or is difficult to pass
• Replace tube – same size.
• If you can’t replace it – try smaller size tube.
• If you can’t get a tube in the stoma, but your child is breathing – give extra oxygen over open
stoma or nose and mouth and call 911
• If your child continues to have trouble breathing
• If tracheostomy tube is in place, give rescue breaths through tracheostomy tube with Ambu bag
• If tracheostomy tube is not in place, give rescue breaths mouth to mouth (over mouth and nose
or over mouth and pinch nose)(may cover stoma with gauze) to help him/her breathe
• Squeeze Ambu bag or give breath 1 time every 2 seconds.
• Check to make sure the chest moves with each breath
• If your child continues to have trouble breathing after rescue breaths or trach tube is not in place
• Call 911
911
Step5
• Continue to use oxygen and give rescue breaths
• Look for signs of circulation. Check for pulse. If your child has no pulse or is blue and not moving,
coughing or breathing, begin CPR until rescue arrives.
Surveillance Bronkowski (Bronchoscopy)
A child with a tracheostomy will periodically
have a procedure called bronchoscopy. This
means to look (-scopy) at the breathing tubes
(bronch-), to assess the health of the airways
and identify and problems. It is usually done in the
operating room. At the same time as this planned airway
assessment, a child who receives mechanical ventilation
might also have an overnight assessment coordinated in the
Pediatric Intensive Care Unit. This assessment is to make
sure the settings on the ventilator are the best settings to
support breathing.
Bronchoscopy might also be performed if a
child has concerning symptoms such as
bleeding from the tracheostomy, trouble
changing the trach tube or difficulty with
ventilator settings.
In order to prepare for a smooth transition
from the fall to winter season, protect your child by getting the
flu vaccine for your child and the whole family. It is just as
important for the people that live with and care for your child to
receive the flu vaccine as it is for your child. The schools will be
offering the flu vaccine again this year.
Flu vaccines are currently available for parents and
caregivers at local pharmacies and may also be available at their
primary care provider's office. If any families do not have
insurance that will cover the vaccine or the finances to pay for it,
please contact us as we may have resources available for you.
If your child does not attend school, check with his/
her primary care provider for availability of the flu vaccine. We
will be offering the flu vaccine to children in the VIP clinic
beginning in mid-October.
The flu virus is spread by coughing, sneezing or
touching. It is also important to wash your hands often with
soap and water or use alcohol hand sanitizer especially after
coughing or sneezing. Cough into a tissue or your sleeve.
Request that people visiting your home or caring for your child
stay away from your home when they are ill.
Further
information regarding the flu and vaccine can be found by
searching http://www.cdc.gov or http://www.health.ri.gov