The Compass 2015
The Compass 2015
The Compass 2015
PEDIATRIC
The Compass
Table of Contents
6
INTRODUCTION
SPONSOR
Chapter 1: Diagnosis
13
SECTION 1.1: RECEIVING THE DIAGNOSIS
Questions to ask
Worksheet for your childs diagnosis
16
SECTION 1.2: UNDERSTANDING THE DIAGNOSIS
An overview of the brain and spinal cord
Tests and procedures
Whos who on the medical team
Common pediatric neurosurgical diagnoses
26 Achondroplasia
27
Arachnoid cyst
27
Arteriovenous malformations
28
Brain abscess
29
Cerebral aneurysms
30
Brain and spinal tumours
31
Cerebral palsy
33
Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40
CSF shunts
43
Intracranial hemorrhage
44
Moyamoya disease
45
Spina bifida
46
Syringohydromyelia (syrinx)
47
Occult spinal dysraphisms (OSD)/tethered cord
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58
63
68
70
79
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105
116
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152
153
168
Introduction
WHY WE WROTE THIS BOOK
Ryan Girard
Authors:
Melissa Da Silva BScN, RN
Wendy Beaudoin NP, PhD
Melody Willier
Vivek Mehta MD, MSc, FRCSC
The Compass
Introduction
Foreword
When your child is diagnosed with a brain or
spinal cord disorder, your family is forced into
a foreign world. Your new reality is filled with
many questions about your childs health and
future. Fear, hope and uncertainty are just a
few emotions that may inundate you.
Pediatric neurosurgery at the Stollery Childrens
Hospital is a surgical service that prides itself
on providing excellent clinical care. Our service
collaborates with many other specialists to ensure
that all the appropriate personnel are involved in
your childs care. The Neurosurgery Kids Fund
(NKF) is a charitable organization whose mandate
is to improve the journey our children and families
will undertake.
The Compass is the brainchild of mothers who
thought that a roadmap would help meet the needs
of their children. This document is designed to help
parents understand the language and medical jargon
theyll hear.
The Compass is also designed to help parents and
families navigate within the health care system, to advocate for their loved one and to deal
with the psychosocial aspects of a childs illness. It is a manual that will help families during
their journey and a testament to how a committed parent can improve our community.
Vivek Mehta MD, MSc, FRCSC
Pediatric Neurosurgeon
FOLLOW US at neurosurgerykids.com
FACEBOOK: facebook.com/neurosurgerykids
TWITTER: @neuro_kids
The Compass
Introduction
Preface
I remember it like it was yesterday sitting next
to my sons bassinet in the neonatal intensive
care unit and feeling so alone. Here in the
middle of a busy, loud room filled with nurses,
doctors, families and friends, I was by myself.
And I was scared.
Monika Melnychuk
The Compass
Introduction
Compass Sponsor
The Building Trades of Alberta Charitable Foundation is proud to partner with the
Neurosurgery Kids Fund and the Stollery Childrens Hospital Foundation in the
production of this book.
Monika Melnychuk
The Compass is about people helping people a philosophy that aligns perfectly with the
Building Trades of Alberta.
There is nothing more important than family. The Compass offers hope, direction and guidance
to the families and patients who are presented with neurosurgical diagnoses. This book gains its
strength from the people who have been on the journey before you, as they share their learning
and discoveries.
We look forward to continuing our partnership with the Neurosurgery Kids Fund and to
continuing to develop The Compass.
The Compass
Introduction
A Strong Foundation
10
The Compass
CHAPTER 1:
Diagnosis
Chapter 1: Diagnosis
13
SECTION 1.1: RECEIVING THE DIAGNOSIS
Questions to ask
Worksheet for your childs diagnosis
16
SECTION 1.2: UNDERSTANDING THE DIAGNOSIS
An overview of the brain and spinal cord
Tests and procedures
Whos who on the medical team
Common pediatric neurosurgical diagnoses
26 Achondroplasia
27
Arachnoid cyst
27
Arteriovenous malformations
28
Brain abscess
29
Cerebral aneurysms
30
Brain and spinal tumours
31
Cerebral palsy
33
Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40
CSF shunts
43
Intracranial hemorrhage
44
Moyamoya disease
45
Spina bifida
46
Syringohydromyelia (syrinx)
47
Occult spinal dysraphisms (OSD)/tethered cord
CHAPTER 1:
Diagnosis
SECTION 1.1 RECEIVING THE DIAGNOSIS
Nothing can prepare you for hearing that your
child or loved one requires brain or spinal cord
surgery. The amount of pain, fear and suffering
this can cause is extraordinary. We know this
because we too have been in a room across
from a doctor, in complete disbelief and shock.
Take a deep breath. Cry, if you need to. Take another
deep breath.
We begin this resource book with information that
will help you understand your childs diagnosis.
Are you alone? Ask to call your partner or someone to
come be with you. If your spouse is unable to attend, put
them on speaker phone so they can hear the information
first-hand from the doctor and ask questions.
If your childs doctor presents or sketches out
diagrams, ask if you can have a copy or take pictures
with your phone. This always makes it easier to
explain to others. Request a copy of pertinent imaging
or lab work.
Turn to page 14 and fill in the blanks. You can
research the diagnosis more easily if you have accurate
information and spelling. Its also important for you
to get contact information. Ask everyone for a contact
card and place it in the card holder located at the back
of this book.
QUESTIONS TO ASK
In a stressful and emotional time, it is nearly
impossible to think of important questions.
Here are some that might assist you:
W
hat happens next? Ask for an
explanation about the process.
W
hen will this happen?
W
hat is the time frame?
W
hat did the scans show?
W
hat other tests are needed?
W
hat is the expected prognosis?
I s there anything else that I should ask?
I s there anyone else I should speak with
before I leave?
A
re there any other non-surgery options?
I f I have questions after I leave who
can I contact?
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13
Risks of surgery:
Risks of surgery:
TEST/PROCEDURE #1
TEST/PROCEDURE #2
Test name:
Test name:
Test date:
Test date:
MEDICATIONS
Name:
Name:
Purpose:
Purpose:
CONTACT INFORMATION/FOLLOW UP
Doctors name:
Doctors name:
Specialty/service:
Specialty/service:
Follow-up appointment:
Follow-up appointment:
EXTRA NOTES
14
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PARIETAL LOBE
FRONTAL LOBE
MOTOR SPEECH
AREA OF BROCA
TEMPORAL LOBE
PONS
TOP VIEW
CEREBELLUM
BRAIN STEM
1.1 The human brain
16
Steve Adams
OCCIPITAL LOBE
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THE CEREBRUM
The frontal lobe is the lobe of the brain that helps with
problem solving, judgment and decision making. This
is where our personality is formed. A small part of the
frontal lobe helps with speech and controls movement.
The frontal lobe is located behind the forehead.
The parietal lobes help us understand and interpret
information from our senses of taste, temperature, pain
and touch. This area also works with handwriting, math
skills, language and body position. The parietal lobe is
located behind the frontal lobe.
The temporal lobes are located in the temple area.
This part of the brain helps us understand what we
are hearing by processing information for speech
and language.
The occipital lobes, which are located at the back
of your head, deal with vision. The optic nerve carries
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M
edulla oblongata: This is the part of the
brainstem that is closest to the spinal cord and
controls breathing, swallowing and heart rate.
We dont have to think about our heart beating or
our lungs working because the medulla oblongata
controls these involuntary functions.
17
NAME
FUNCTION
Cranial Nerve 1
Olfactory
Smells
Cranial Nerve 2
Optic
Vision
Cranial Nerve 3
Oculomotor
Eye movement
Cranial Nerve 4
Trochlear
Cranial Nerve 5
Trigeminal
Cranial Nerve 6
Abducent
Cranial Nerve 7
Facial
Cranial Nerve 8
Auditory
Cranial Nerve 9
Glossopharyngeal
Cranial Nerve 10
Vagus
Cranial Nerve 11
Accessory
Shoulder movement
Cranial Nerve 12
Hypoglossal
Reference:
Thelan, L.A., Urden, L.D., Lough, M.E., Stacey,
K.M. (1998). Neurologic Anatomy and Physiology.
Mosby Inc. Critical Care Nursing: Diagnosis and
Management (3rd edition) (pp 742-746).
18
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Three layers make up the covering of the brain; innermost is the pia mater, the middle layer is the arachnoid
and the outer layer is the dura mater. The toughest
layer is the dura mater. Below this layer is a space where
subdural collections such as fluid or blood may occur.
In the subdural space, children may occasionally
accumulate blood, cerebrospinal fluid or an infection.
Subdural hematomas (blood) often develop after a
SUBARACHNOID SPACE
SKULL
DURA MATER
ARACHNOID
PIA MATER
Charles Burke
CEREBRAL CORTEX
VENTRICULAR SYSTEM
GREY MATTER
THORACIC 7
LUMBAR 4
Charles Burke
CERVICAL 5
WHITE MATTER
Steve Adams
20
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SPINAL COLUMN
SKULL
ANTERIOR (FRONT)
CERVICAL VERTEBRAE
BODY
THORACIC VERTEBRAE
TRANSVERSE PROCESS
LUMBAR VERTEBRAE
SPINAL CANAL
POSTERIOR (BACK)
ANTERIOR
Charles Burke
SACRUM
SPINOUS PROCESS
POSTERIOR
SENSORY
MOTOR
GREY MATTER
1.6 Spinal nerves
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WHITE MATTER
Charles Burke
21
Steve Adams
We all wish doctors could look at a child and know everything that is going on inside them. Since this is impossible, it
is necessary for doctors to order tests, scans and procedures. It may seem like doctors are bombarding you and your
child, but the more information the doctor and the team have, the better they are at making an accurate diagnosis and
recommending the best treatment.
Outside of the family room on 4H2 at the Stollery Childrens Hospital there are many handouts available that explain
tests and procedures. These sheets may also be helpful to you.
A child life specialist is available within the hospital to help prepare and support children during procedures or any
portion of their hospitalization. They establish a trusting relationship with your child and subsequently teach them
ways to cope. They offer play programs, teen support, one-on-one interaction, preparation and teaching for surgery or
procedures. The specialists can be reached at (780) 407-6818. Its worth the call.
ANGIOGRAM
BLOOD DRAW
AUDIOGRAM
BLOOD TRANSFUSIONS
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ELECTROENCEPHALOGRAM (EEG)
SPINAL TAP
TRANSCUTANEOUS DOPPLER
Reference:
wikipedia.org/wiki/Brain, reviewed May 25, 2014;
brainmadesimple.com, reviewed May 25, 2014.
Thelan, L.A., Urden, L.D., Lough, M.E., Stacey,
K.M. (1998). Critical Care Nursing: Diagnosis and
Management. Mosby Inc., Missouri
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23
DOCTORS
NURSES
24
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SPECIALIZED CLINICS
25
ACHONDROPLASIA
26 Achondroplasia
27 Arachnoid cyst
27 Arteriovenous malformations
28 Brain abscess
29 Cerebral aneurysms
30 Brain and spinal tumours
31 Cerebral palsy
33 Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40 CSF shunts
43 Intracranial hemorrhage
44 Moyamoya disease
45 Spina bifida
46 Syringohydromyelia (Syrinx)
47 Occult spinal dysraphisms (OSD)/tethered cord
Treatment of achondroplasia
Most children with achondroplasia will not need
neurosurgical intervention. Neurosurgical intervention
in children with achondroplasia focuses on the
following areas:
Brainstem compression: The opening at the base
of the skull where the brain and spine exit, called
the foramen magnum, can become compressed.
This compression can pinch the brainstem causing
breathing difficulties, which can lead to death if not
treated.
Hydrocephalus: The flow of cerebral spinal fluid
may be a complication in some children, and if
required, a shunt may be inserted into the brain to
relieve the pressure and drain CSF.
Spinal cord/spinal nerve compression: If the
vertebrae do not grow to allow for enough space for
nerves to pass in and out, spinal nerves can become
compressed, which can lead to numbness, pain or
weakness.
Orthopedic surgery: Many children with
achondroplasia have lordosis or kyphosis, which is
abnormal curvature of spine (hunch back or round
back). It may require orthopedic surgery.
Reference:
hopkinsmedicine.org; Achondroplasia,
en.wikipedia.org, reviewed June 2, 2014.
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ARACHNOID CYSTS
ARTERIOVENOUS MALFORMATIONS
AVM
AVM
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27
BRAIN ABSCESS
28
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CEREBRAL ANEURYSMS
ANEURYSM
Reference:
What you should know about strokes from
strokeassociation.org, reviewed on May 23,2014.
BLOOD VESSELS
BRAIN
Steve Adams
CEREBRAL ANEURYSM
1.11 Aneurysms
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CEREBRAL PALSY
32
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CHIARI MALFORMATIONS
CHIARI TYPE I
CHIARI TYPE II
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CRANIOSYNOSTOSIS
CORONAL SUTURE
FRONT
METOPIC SUTURE
SAGITTAL SUTURE
FRONT
FUSED
SUTURE
THE PATIENT
HAS A LONG,
NARROW HEAD
BACK
LAMBDOID SUTURE
BACK
1.15 Unilateral coronal synostosis
FRONT
THE PATIENT
HAS A TRIANGLESHAPED
FOREHEAD
FRONT
FUSED
METOPIC
SUTURE
34
BACK
Charles Burke
FUSED
SUTURE
BACK
1.17 Metopic synostosis
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FUSED
SUTURE
FRONT
BACK
1.21 Endoscopic sagittal synostosis repair incisions
36
OUTLINE
OF BONE
REMOVAL
FRONT
Charles Burke
BACK
1.22 Endoscopic sagittal synostosis repair removal
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EPILEPSY
Types of epilepsy
The two types of epilepsy are generalized and partial
(focal). The seizures associated with generalized
epilepsy (whole brain involved) are:
Grand mal seizures: Patients lose consciousness
and have muscle stiffness and convulsions. You will
often hear this referred to as tonic-clonic. Tonic
is referring to the stiffness and clonic is referring to
the jerking motion.
Petit mal or absent seizure: This type of seizure
can occur multiple times in a day. There is a
change in consciousness and patients may stare
in a strange way.
Clonic seizures: Patients experience jerking
movement with no change in consciousness
Tonic seizures: Muscles are stiff
Atonic seizures: Muscles become weak
The types of seizure for partial (focal) epilepsy are:
Simple: When people have simple partial seizures,
they are fully awake, alert and able to interact
during the seizure. These seizures are short in
duration.
Complex: During these seizures people can appear
like they are day-dreaming and staring blankly.
Some people will begin fidgetting or doing a
repetitive movement such as picking at clothes or
smacking their lips.
Managing seizures:
Some children have seizures that are controlled with
medications while other children have seizures that
are difficult to control, despite treatment. The type of
epilepsy that is difficult to controlis called medically
intractable epilepsy. Uncontrolled epilepsy places the
child at risk for physical injury during seizure/falls,
adverse reaction to medications, learning impairments
and disruption to daily life.
The first treatment option for epilepsy is always
medication. There are many different types of
medications that may be used depending on the type of
epilepsy and frequency of seizures. If one medication is
not successful in controlling the number and severity of
seizures others may be added.
If a child is on multiple medications and continues
to have debilitating seizures, a workup for brain
surgery may be an option for your child. This workup
will usually include continuous telemetry to try to
determine the area of the brain that is causing the
seizures. Patients may also require depth electrodes,
a surgical procedure where, while your child is asleep,
very thin electrodes are inserted into the brain to
further identify the area where the seizures are starting.
The electrodes are connected to a monitor for several
days and continuous reading of the electrical impulses
37
38
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HYDROCEPHALUS
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39
DATE OF SURGERY/CHANGE
40
VALVE
1.23 Shunt
Charles Burke
CSF SHUNTS
TYPE OF SHUNT
SHUNT SETTING
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1.26 Hydrocephalus on a CT
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41
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INTRAPARENCHYMAL HEMORRHAGE
SUBDURAL HEMORRHAGE
INTRAVENTRICULAR HEMORRHAGE
1.30
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Charles Burke
EPIDURAL HEMORRHAGE
43
Causes of ICH?
The most common cause of blood inside the skull is
trauma. This trauma may be as natural as the birth of
your child on one extreme to a car collision on the other.
Diagnosing ICH
Important questions that you and your neurosurgeon
will be trying to answer include:
How much unwanted blood is inside the head
and does it need to come out? (This is because the
blood is impairing brain functioning or significantly
increasing the pressure in the brain.)
What compartment is the blood in: one of the
coverings of the brain or within the brain substance?
What is the cause of the bleeding, trauma,
underlying conditions or medication?
Does your family have a history of bleeding disorders?
What is the chance that the bleeding will happen again?
MOYAMOYA DISEASE
SPINA BIFIDA
SYRINGOHYDROMYELIA (SYRINX)
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Treatment of syringohydromyelia
If the syrinx is creating symptoms, the first treatment is
to address the underlying cause of the syrinx. If there is
a Chiari malformation or a tethered cord that is causing
the syrinx, then the underlying cause will be treated.
In the majority of cases the syrinx does not direct
treatment. If your child has a small thoracic syrinx
with no symptoms the neurosurgeon may elect to
follow your child with repeat physical exams and/or
neuroimaging.
Direct treatment of the syrinx can involve
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Notes
48
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Notes
50
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CHAPTER 2:
55
58
63
68
70
CHAPTER 2:
Here are some tips to help your child feel safer about
their upcoming surgery and hospitalization:
Take the time to listen to your child and let them
express their feelings about the upcoming surgery.
Plan for some quiet time together.
Be honest about what will happen, all the while
reassuring them.
Use short, simple words or sentences appropriate
for your childs level of understanding.
Reassure your child that if something hurts, there
are ways to help the pain, including medicine,
PACKING CHECKLIST
IMPORTANT:
Clear fluids are liquids you can see
through, such as apple juice, water
and ginger ale.
REMEMBER: no milk and no orange
juice. These are not considered clear fluids.
NPO (Nil per os) means nothing by mouth:
no food or drink.
Your childs surgery day or time may be
changed due to unforeseeable reasons,
such as your childs surgeon being called
to an emergency.
54
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I will go to Pre-Admission
Clinic 1C3.
I will check in at the registration
desk. I will get an ID band to put on.
For my safety, I need to keep this
band on.
I will meet my
nurse. She will
help me get ready
for my operation.
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I will be shown to a
room to get ready.
I will change
into hospital
clothes.
55
Visual Schedule
T
he nurse will put
magic cream on my
right and left hands.
The cream is covered
by a clear band-aid.
The magic cream may
make my skin tingle.
I cannot touch the
magic cream.
56
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Visual Schedule
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57
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Hospitalization
RESOURCES IN HOSPITAL
Hospitalization
T
he Beach: OK, theres no lake. But its a supervised
playroom with activities available for pediatric
patients. Level 4 outside Unit 4C and is open
Monday to Friday. The teen room is open four
afternoons per week.
Wireless Internet: Its available to Units 4C, 4D,
4E, and 4F2. Visit the Family Room at 4H2.02
for a password and username. Wireless intranet
is funded by the Stollery Childrens Hospital
Foundation.
MAP
SITE
GEN
Walter C. Mackenzie
Health Sciences Centre
87 AVE
Jubilee
Auditorium
Lister
Hall
Edmonton
Clinic
North
Residence
Public Parking
Entrance
WALTER C.
MACKENZIE
HEALTH
SCIENCES
CENTRE
Future Site
Pedestrian/
LRT Crossing
EMERGENCY
Clinical
Sciences
Building
Blood
Donor
Clinic
Staff Parkade
Public
Parkade
Aberhart
Centre
CP
ST
Corbett
Hall
83 AVE
Cro
Can ss
Institcer
ute
82 AVE
P
UNIV
ERSI
TY A
VE
IC3 Pre-admission Clinic is located immediately to the right through this entrance
Stollery Childrens Hospital Emergency entrance
The Surgery Clinic is in the Clinical Sciences Building, on the main floor behind the elevators
The parkade and the hospital are connected by a pedway
60
Ped
Ped
84 AVE
OUTPATIENT
RESIDENCE
HEALTH
SCIENCES
LRT
RTF
85 AVE
83 AVE.
117
86 AVE
Zeidler
Ledcor
Centre
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Courtesy of albertahealthservices.ca
College Plaza
Medical Sciences
Building
117 ST
CP
HRIF
112 ST
OPR Outpatient
114 ST
Building
Heritage
Medical
Research
ABAC
Admi
Admi
Adult
Berna
Cash
Clinic
Clinic
A.H
Adu
Car
De
Fam
Me
Me
87 AVE
Sen
Sur
Cysto
Day S
Day W
Derm
Diagn
EEG
Emer
Endo
Facili
Facul
Food
112
Caf
Caf
He
Mr
Tre
Hospitalization
Mr. Sub
Customized sub sandwiches, snacks and drinks
11 a.m. to 3 p.m., Monday to Friday
112 Street Grill Snack Bar
Burgers, pizza, pasta, drinks, coffee and snacks
10:30 a.m. to 10 p.m., Monday to Friday
6:30 a.m. to 10 p.m., Saturday, Sunday, holidays
Main Cafeteria
6:30 a.m. to 2 p.m., Monday to Friday
Closed on weekends
Caf Fantini
Soups, sandwiches, snacks, specialty coffee
6:30 a.m. to 2 p.m., Monday to Friday
Closed on weekends
Located on the second level by the elevator
Tim Hortons/Wendys
Located outside of the front entrance of the hospital
emergency department entrances
Open 24 hours per day
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Subway
Customized sub sandwiches, snacks and drinks
8511 - 112 Street
Located outside of the main hospital entrance and
across the street
Hours of Operation:
Monday to Friday: 7 a.m. to 11 p.m.
Saturday and Sunday: 9 a.m. to 10 p.m.
B
oth Sobeys and Second Cup are also available
across from hospital.
61
Hospitalization
ACCOMMODATIONS IN EDMONTON
Notes
62
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Pete Ryan
As difficult as it is to be in the hospital with your child, you may have mixed emotions about going home.
Managing pain, assessing wounds and identifying post-operative complications can all seem very scary and
overwhelming. This section is designed to give you information to help you go home feeling more secure
and confident. It offers you information on home care of a child post-operation, preparing for follow-up
appointments, directions for creating a medical profile and where to get medical alert jewelry.
63
Going Home
WOUND CARE
IMPORTANT!
64
FAHRENHEIT
104.0
103.1
102.2
101.3
100.4
98.6
96.8
95.0
CELSIUS
40
39.5
39
38.5
38
37 Normal
36
35
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CONSTIPATION
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65
PAIN
TAKING MEDICATIONS
66
HELPFUL HINTS
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A
ttend the appointment prepared with questions,
comments and concerns (make a list between visits
so you dont forget).
A
dvise the medical professional about your
cultural beliefs, if it is necessary.
I t is always possible to have the Stollery Childrens
Hospital arrange for an interpreter that best suits
your family. Please give them advance warning
should you require this benefit.
I f your child has a new rash, fever or has been
exposed to chicken pox in the last three weeks,
or if someone in your family has been recently
diagnosed with tuberculosis, call the office as soon
as possible to reschedule the appointment.
M
ake arrangements for housing and
transportation, if required.
Notes
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67
Pete Ryan
After surgery, some children will not go directly home some will head to the Glenrose Rehabilitation Hospital.
The next few pages will outline some of the services and programs offered by the Glenrose, as well as a list of
orthotists available in Edmonton, if your child should require their service.
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Rehabilitation
O
rthotic Consultants
11838 - 111 Avenue
(780) 447-2267
O
rthotic Design & Manufacture
101, 10106 - 111 Avenue
(780) 479-3275
Bouma Orthotic Clinics Incorp.
141, 65 Chippewa Road, Sherwood Park
(780) 417-7008
Notes
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69
Medical profile
EMERGENCY CONTACT AND CURRENT MEDICATION INFORMATION
PATIENT INFORMATION:
Name:
Date of Birth:
Cell:
PHYSICIAN(S):
TELEPHONE:
SPECIALTY:
LOCATION:
HOME TELEPHONE:
CELL:
WORK TELEPHONE:
EMERGENCY CONTACTS:
NAME:
70
RELATIONSHIP:
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Medical Profile
MEDICAL CONDITIONS:
ALLERGIES TO MEDICATIONS:
CURRENT MEDICATION REGIMEN
MEDICATION:
DOSAGE:
FREQUENCY:
DOCTOR:
REASON:
DATE:
RESULTS:
DATE:
SHUNT PROGRAMMING
SETTING:
DATE:
RESULTS:
TIP: You can add in any additional sections that you require: general overview, equipment, stretching and so on.
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71
Medical Profile
Medical Diary
DATE:
SERVICE/PROCEDURE:
Laurens Hope
laurenshope.com
Lovable Labels
lovablelabels.ca
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Medical Profile
HOPE STONES
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73
Medical Profile
MEDICAL EVENT:
Admission to hospital
Attend camp
Brain or spine surgery
Biopsy
Catheter, drains, tubes in or out
Central line or PICC line
Clinic visit (doctors appointments)
Dental
Discharge
Dressing change
ER visit
EVD - External ventricular drain
Glenrose hospital
Intubation and extubation (breathing tube put in and removed)
Isolation
IV start and stop
Major milestones
MRI, CT scan or ultrasound
NPO (nothing by mouth)
Needle pokes & bloodwork
Other tests and scans
Orthotics - foot/hand/brace/helmets/leg
Oxygen, bipap, cpap
Other surgery
Physio and occupational therapy
PICU or NICU admission
Procedure beads
Satellite visit
School
Shunt infection
Shunt or reservoir tap
Suture or staple removal
TPN (intravenous nutrition)
Transfusion
Transport of any kind
Wound infection
X-ray
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Notes
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CHAPTER 3:
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CHAPTER 3:
Christiane Beauregard
Early education
Programming for children with special needs will typically start before elementary school.
A few programs in the Edmonton area that are often initiated at an early age include:
Early Education
MY THREE-YEAR-OLD BOSS
by Jen Litzenberger
As a developmental specialist, I spend my days with amazing
children either doing home programming, providing support at
playschool or out in the community. Along with my team and the
family, we set goals for the children, and my job is to incorporate
learning into their play experiences. That said, basically, I am
the student...and a three-year-old is my teacher! Each day my
teacher gives me lessons on motivation, appreciation and
dedication. Those are qualities I think we all need to learn about.
We adults lose our ability to get back to the basics; kids learn most
of what they know through play. What a fantastic way to learn.
Imagine going to work every day and building a castle of
blocks, playing with a train set or going for a walk to the park.
Thats a childs occupation, and I am so thankful I get to be a
part of that. There are many challenges, but the rewards are
endless. I get the chance to celebrate all victories big and small,
whether it is a new word spoken, one more step or even a few
seconds of eye contact. Kids are amazing little people that have
the ability to accept that every one of us is unique. Through
their curious nature, they can learn about all of our differences.
I am honoured to have been welcomed into the homes of these
families and that they have allowed me the opportunity to spend
time with their wonderful children.
Christiane Beauregard
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School-age children
The school system encourages children to attend school in the neighbourhood in which they live because it encourages
peer relationships in their community. There are many different programs available that can be beneficial for your
child, so it is important for parents to do their research before enrolment. There are a number of programming options
available in both the Edmonton Public and Catholic School system. The following are examples from the Edmonton
Public School Quick Guide. (Edmonton Catholic Schools also has integrated programming please visit the website at
ecsd.net for more information.)
PROGRAMMING
Regular program:
Regular programming is offered in most schools but
can be delivered differently depending on the school.
Alberta education has a mandatory curriculum at all
schools.
Alternative program:
Some schools have a focus on a specific type of arts,
athletics, language, faith or cultural philosophy while
meeting the mandatory curriculum.
Special education program:
Special education services are available at some
schools. These programs will offer specialized
services and support to children with special needs.
- Behaviour and learning assistance helps students
with chronic, extreme pervasive anti-social
behaviours achieve academically
- Challenge programming is for students with
high-ability learning who have special needs
- Community-learning skills/behaviour-learning
assistance focuses on students with moderate
cognitive disabilities and significant developmental
delays
Reference:
patheights.epsb.ca/publications/index.shtml
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Christiane Beauregard
S
tart early. It is important to set up a meeting with
the teacher, principal and special needs aide at the
school in June the year before to introduce your
child and open up lines of communication about
your childs needs. It gives the teacher an ample
amount of preparation time to think about ways of
meeting and integrating your childs needs.
B
e short and sweet. Teachers receive many notes
each day from parents. Since teachers want to
focus their time on the students, it is important for
parents to keep their notes short and to the point.
If you have a very sensitive or confidential matter
to discuss, consider setting up an appointment or
sending a note in the agenda book for the teacher to
call you directly.
B
e patient, but be persistent. If you do not
receive a reply immediately, wait a few days and
send a follow-up note. Chances are, the moment
the teacher sat down to reply to you something
happened in the class that needed his or her
attention.
M
ake an appointment. Teachers have a set teaching
plan each day and only a limited amount of time in
which to implement it. When a teacher is pulled out
of class to speak with a parent, it directly impacts
student learning that is, your childs learning.
ake another appointment. If the teacher is truly
M
not listening or responding, then consider setting
up an appointment with the principal.
J ust ask. Communication is especially important
at the beginning of the year. Many school boards
discourage emails or text messages. Agenda
messages, leaving a message with the secretary or
appointments are other options.
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Inclusion
Having your child involved and included in the school community is a top priority for many parents.
Jessica Bosma is a teacher and parent of a medical
child with insight into addressing inclusion in the
school system. Here is her wisdom:
I am a teacher, but more importantly, I am a mother.
Within the last year, I became the mother of a child
with special needs. Throughout my career, Ive worked
with many different children with a wide range of
needs, and have always held a special place in my heart
for these children and their families. As a bystander
to their struggles in the education system, Ive always
admired the strength of these families. Until I had a
special needs child of my own, I had never experienced
the pain that cuts so deep into your heart when you feel
you are helpless to your child. Much of the journey of
a special needs child is put into the hands of others. I
strongly believe that the one place where this journey
can be heavily influenced by the parents with a deep
vested interest and strong collaboration is within the
education system.
On February 28, 2012, my then-15-month-old son
Oliver was diagnosed with type one diabetes. I cried
with fear for the future and the great unknown.
I immediately asked myself, Would my son still have the
same opportunities as the other kids? Would he be seen
as different? What would his quality of life be like?
The teacher in me worried. Would he be included? And
what does inclusion mean for him once he enters the
school system?
Inclusion
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PARENT-PROVIDED TRANSPORTATION
In some cases, parents of students with special
education needs may receive a subsidy for parentprovided transportation when a reasonable level of
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Information-sharing profile
There are a variety of ways parents can share information about their childs medical
ailments, their vision and goals. The next few pages will offer you examples of ways to
present information to your school community. This profile could be used for school,
daycare, caregiver, friends or families.
Christiane Beauregard
Section 2 - About me
A
bit of information about your childs strengths,
interests and social involvement. Putting a few
pictures of your children doing something they
love is a great addition to this document. You can
choose to do point form or paragraphs.
Section 3 - Challenges
Information about things that may be challenging
for your child either emotionally or physically.
Things to avoid would go in this section.
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ABOUT ME
I am a fun and happy three-year-old boy
I love my Mom and Dad, and I absolutely
adore my brother
Playing with trains is my favourite thing to do
I love watching the Magic School Bus and
Leap Frog videos
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Information-sharing profile
Section 4 - My diagnosis
Use this section to offer some information about
your childs diagnosis, keeping in mind any
information to help the teachers or other caregivers
understand the condition. You can create another
section for medications, medication side effects,
allergies and previous surgeries.
MY MEDICATIONS
The medication that I take is for my tight muscles. It is
called _____________ and it can make me sleepy during
the day. I also need to avoid eating certain foods like
_____________ because it doesnt react well with my
medication.
Section 5 - My equipment
This section gives information on any assistive
equipment or devices that your child may require.
Including a picture is helpful. Include: braces/
orthotics, mobility devices like walkers/canes/
wheelchairs, communication devices, oxygen or
breathing, etc.
Section 6 - Warning signs
If your child has a condition that would require
close monitoring for warning signs you might
want to create a section here for that. The more
information we provide to our teachers and
caregivers the better they will be at identifying
warning signs.
MY EQUIPMENT
The equipment I need to use daily is my cochlear implant.
It has been surgically implanted because I have a hard
time hearing you. Sitting close to me will also help me
hear you better.
WARNING SIGNS
I have a shunt, it helps drain fluid from my brain.
If my shunt becomes infected or obstructed I can get very
sick. Please watch for these symptoms to keep me safe:
Bulging at the valve site
Frequent and increasing severity of headache
Numbness or change in sensation to one side of the
body
Balance is off
This is just a sample, list is not complete
Review the information with your childs doctor to confirm
accuracy and include additional handouts.
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Information-sharing profile
LETTER TO PARENTS
Hello,
We are the Jones family and we would like to introduce you to our
son Preston! This year Preston will be attending kindergarten with
your child and we are very excited! Since our kids are going to be
spending the school year together we thought it would be a good
idea to share a bit of information about Preston with you.
When Preston was one month old, he was very sick with an
infection in his brain called meningitis. He spent a few months in
the hospital, fighting to get better and thankfully he did! Preston
now requires a wheelchair to help him get around because his
leg muscles are tight. He loves when his friends push him around
slowly. Our little boy is very smart and social. He has a very good
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Government programs
ALBERTA CHILD HEALTH BENEFIT
PROGRAMS ALBERTA
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Government programs
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Government programs
SAVINGS PLANS
How do I apply?
O
btain a social insurance number for your child.
1-800-622-6232
servicecanada.gc.ca
O
pen an RDSP at the major financial institution of
your choice and apply for the grant and the bond.
disabilitysavings.gc.ca
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www.wheelchair.ca
This site lists funding sources for equipment, in
addition to car manufacturers that provide discounts
for alterations to vehicles needed to accommodate
individuals with physical disabilities.
ASSOCIATIONS
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E
dmonton Down Syndrome Society
(780) 944-4224
edss.ca
E
dmonton Garrison Family Resource Centre
(780) 973-4011 ext 6300
familyforce.ca
F
amily Centre
the-family-centre.com
Gateway
(780) 454-0701
gatewayassociation.ca
M
uscular Dystrophy Association Canada
(780) 486-1948
muscle.ca
M
ilitary Family Resource Centre
mfrcedmonton.ca
S
pina Bifida and Hydrocephalus Association
(780) 451-6921
sbhana.org
W
ar Amps
1-800-267-4023
waramps.ca
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CHAPTER 4:
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CHAPTER 4:
PHYSICAL THERAPY
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COMPLEMENTARY THERAPY
D
r. Bohdan Kuzyk
Pediatric Specialist
845, First Edmonton Place
10065 Jasper Avenue
Edmonton, AB
(780) 428-7767
D
r. N.D. Preshing, Dr. Jerry Thomas &
Dr. C. Martin-Neumeyer
General Dentistry
University of Alberta Dental
Clinic, WMC-2C18440-112 Street
Edmonton, AB
(780) 407-6854
D
r. Alan Roth
Pediatric Specialist
440, 4445 Calgary Trail South
Edmonton, AB
(780) 435 -2098
D
r. Salina Tromposch
General Dentistry
330-664 Wye Road
Sherwood Park, AB
(780) 476-2401
Reference:
Alberta Health Services. Pediatric Feeding &
Swallowing Consultation Service, Pediatric
dentist list - August 2008
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Caroline Hamel
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Caroline Hamel
F
ree to Be Me
Free to Be Me provides physical education and
programming for kids and teens with disabilities.
There are a variety of options available;
find what works best for your child at
steadwardcentre.ualberta.ca.
H
orseback Riding
Little Bits Therapeutic Riding Association is a
non-profit, charitable organization that provides
recreational horseback riding with therapeutic
benefits for children and adults with disabilities.
The waiting list can be fairly long at times; get
your name on it early. Check out littlebits.ca for
more information.
I-dance
I-dance is a program that includes both disabled
and non-disabled people who just love to dance! It
uses integrated dance techniques to focus on the
strengths of each individual dancer.
K
inder Music
Kinder Music offers music, art, drama and dance
programs for children one and a half to seven years old.
Go to kindermusik.com to learn more.
P
aralympic Sports Association
Spring programs include outdoor soccer, roller
inter-cross, roller/sledge hockey and adaptive golf.
Summer brings a variety of different day camps that
are accessible for children and teenagers. These camps
have different genres but include sports and dance.
Fall and winter programming includes indoor
soccer, teen and adult groups, sledge hockey,
wheelchair square dancing and taekwondo.
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SAFETY NOTE:
Caroline Hamel
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M
onday Morning Magic K-Days
This is a free morning to enjoy the K-Days
Exhibition experience for families of chronically ill
or disabled children over the age of three. Register
early, as it fills quickly.
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Caroline Hamel
C
amp Everest
Any child seven to 17 years
of age who has undergone
brain or spinal cord
surgery at the Stollery
Childrens Hospital can
attend Camp Everest.
Registration priority is given to campers who do not
have a summer camp alternative. A summer camp
alternative is one that is either able to meet the
campers medical needs or provides them with an
environment in which they can interact with children
of a similar diagnosis.
neurosurgerykids.com
Lil Everest
Kids up to six years old who have had brain or spinal
surgery, their siblings and families are welcome
to a one-day camp experience filled with fun and
laughter.
neurosurgerykids.com
Camp He Ho Ha
Camp He Ho Ha provides recreational opportunities
not only for children with disabilities but also for
adults of all ages with every type and degree of
disabilities.
camphehoha.com
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Camp Freedom
This four-day overnight camp is for teens aged
12 18 years old with spina bifida. For information,
call the Spina Bifida & Hydrocephalus Association of
Northern Alberta at (780) 451-6921.
sbhana.org
Camp Beat It (Family Camp)
This is a Kids with Cancer Camp that is held for four
days each September long weekend at Camp He Ho
Ha and provides an indoor camping experience for
families who are at various stages of the disease and
survivorship.
Camp Kindle
The Kids with Cancer Camp provides funding
for all Northern Alberta children with cancer and
their siblings to attend Camp Kindle. This weeklong program, delivered by the Kids Cancer Care
Foundation, is open for children age six to 17 over the
summer months.
CPAA Vacation Villa - Vacation Without Limits
This program, run by CP Association of Alberta,
offers a fully accessible vacation home located in
Raymond Shores resort by Gull Lake. It is available
to members and non-members alike. Call toll free
1-800-363-2807 or (403) 543-1161 for information.
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E
aster Seals Camp (Horizon)
Horizon has a residential camping program for
children with diabetes, kidney impairments,
ostomies, burn survivors and their siblings.
They specialize in outdoor and adventure-based
programs for youth and adults with special needs,
including serious illness, developmental and
physical disabilities.
easterseals.ab.ca
Hearts in Action Camps
Hearts in Action Camps is a summer day camp for
children, youth and young adults. Hearts in Action
also has year round camps.
adaptabilities.ca
Our Lady of Queen Peace Ranch
This ranch is a recreational facility designed to
provide a FREE outdoor experience for children
with life challenges. It is a non-profit organization
that works directly with youth, families and various
agencies who work with physically, mentally,
financially and/or emotionally challenged people,
while providing a fun opportunity to experience the
natural outdoor environment. They offer day trips,
weekend family teepee rentals and much more.
There are two locations.
ourladyqueenofpeaceranch.com
Robin Hood Association
The Robin Hood Association hosts many group
programs and summer camps for children two and a
half years old and older.
robinhoodassoc.com
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TRAVEL INSURANCE
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Hatch Backs
These shoes literally open up. Slide the foot in and
do the strap up. Go to hatchbacksfootwear.com
to see more.
MEC Boots
The MEC Toaster Booties cost only $27 and they
go over AFOs easily. Although they dont offer the
support a rigid shoe does, they can be used to keep
little feet warm during a stroller ride or if the child
is in a wheelchair. Mountain Equipment Co-Op in
Edmonton has many different colours and sizes.
Stonz
Stonz boots are a lightweight boot that is good to
-40 C with the insert and -20 C without. Use the
double toggle to tighten boots. Stonz boots are
made in Canada.
Pedro Shoe
If your child requires a rigid shoe, check out Pedro
Shoes. There are loads of styles and different amounts
of support. You may want to have a conversation with
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MOM TIPS
Glasses
Miraflex offers top-quality frames. They are
designed with the child in mind, whether a few
months old or an adolescent. Miraflex has over
20 years of experience with childrens eyewear
and offers the largest range of childrens frames
designed by experts to satisfy the more demanding
professionals requirements. These glasses are hinge
free and metal free.
W
alking helmets
Protecting children from falls when walking or
from injury during sports is very important. This
site offers a variety of helmets, even ones that can
be customized for children with large or very small
heads, at kidsafetyhats.com.
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Clothing
This site offers easy access clothing for all age
groups.
easyaccessclothing.com
Koolway Sports
Koolway Sports designs outerwear for people
in motion while enabling them to achieve their
maximum level of independence in all aspects
of life.
koolwaysports.com
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JACK-OF-ALL-TRADES
Bikes
Biking is a great activity that helps children
strengthen their legs with pedaling and their arms
with steering, and it can promote independence.
This trike was purchased at Toys R Us and an
uncle and shoemaker made the foot pedals. Biking
at the mall in winter can keep your child active.
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CHAPTER 5:
Stories of Coping
116
CHAPTER 5:
Stories of Coping
Most parents agree that having children is one of the most rewarding and amazing life
experiences. Your heart feels like it literally doubles in size. When you receive the devastating
news that your child has medical issues or disabilities, the emotions you feel can be
overwhelming and difficult to deal with.
Everyone travels a different emotional path and will find different interventions helpful in
coping. It is important to be aware of some of the emotions you might experience and be aware
of some of the warning signs that you might need to seek professional assistance.
There are five stages in the cycle of grieving. We chose to include this because we found that
each of us had one way or another travelled through the stages. It is important to read it be
aware that you may go through this.
Robert Carter
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BARGAINING
Make this not happen, and in return I will ________.
DEPRESSION
Im too sad to do anything.
ACCEPTANCE
Im at peace with what happened.
Robert Carter
ANGER
Why is this happening? Who is to blame?
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RESOURCES
RESPITE CARE
115
WELCOME TO HOLLAND
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God only knows how much longer I will have with this
amazing little hero, and I take in each second of everyday
and hold on to every smile, laugh and memory as tight as I
can. Even though its been so hard, I feel so lucky to be his
mom and be part of his journey along with all the amazing
family and friends that are right here every step of the way.
Every day we wake up we have a choice: we can be
angry, frustrated and unhappy or we can live like Jacob
and be happy and grateful, taking on whatever life
throws our way. We make every smile count and share
love, hope and strength with all those around us! Jacob
is a true superhero, he is my world and he has taught
me more than I could ever teach him. Im the luckiest
mom in the world to call him my son!
After his 90th (yes, 90th) surgery, Jacob meets the warm and
tender touch of his beautiful mother, Soula. It truly is amazing how
love can emanate from a photo.
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LITTLE D by Lindsay*
We tried for months to find out what was wrong with our
son. His weight dropped, he stopped meeting milestones
and he continued to regress and deteriorate to the point
where he looked like he did not even want to go on
anymore. We stressed and searched and finally 10 months
later, after numerous tests and procedures, an MRI finally
gave us our answer. Your son has a tumour in his spinal
cord. The tumour is very large; it starts at the top of the
spine and goes approximately halfway down his back. We
will be operating in 10 days and you need to get him to
gain as much weight as possible before then. I know this is
a lot to take in. Do you have any questions right now?
OK is the only word that escapes my mouth.
Everyone leaves the room; we both sit there and stare
straight ahead, we stare at each other, we stare at our son
and then we cry. My ears are ringing and I have one of
the worst migraines ever. I feel very alone. My marriage
has been unravelling from the previous months of stress;
I am 27 and pregnant with our third child, who is due to
arrive in less than a month from this exact day. The next
10 minutes are full of crying and a few short sentences.
Oddly enough I feel relief. We finally have an answer and
they are going to fix our son.
The next 10 days somehow fly by yet still feel like an
eternity. We dont talk about the surgery; we enjoy every
minute we have together. Tomorrow morning is the
big day. My nerves are starting to rattle and I am feeling
more anxious as I listen to the clock on the wall tick
away. I dont sleep at all; I sit in a rocking chair holding
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vomit, headaches and nights in the ER, but they are few
and far between. We are strong, we are together and
that is our reality.
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making sense, you could tell that she was happy to hear
and talk to me. Ashley was 13 at this time and had to
once again relearn how to walk and talk. This whole
time my heart was broken for her. I just wanted to see
her running outside and playing like a normal 13-yearold teenager. There was a fire in Ash, and a strong
desire to recover. Her will to live was much more than
all of us and the doctors could imagine. Ashley taught
me a huge lesson in life never give up on your dreams
and goals. Life is so short and it can be taken from you
in an instant. I am so thankful to have her in my life.
Ashley inspires me to be a better person and
appreciate the things in life that you normally wouldnt
think twice about. She continues to push herself and
do things that people told her she wouldnt be able to.
Ash always tells me to never give up on my dreams and
I have finally applied to one of the most prestigious
makeup schools in the world and have been accepted.
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Remember:
Ask something about the child every time you see
their parent.
Realize that parents love talking about the child
and even if they cry, that is OK. No one can ever
make them more sad about her; that has already
happened.
Ask to see photos of the child.
TIP: More information on bereavement can be found
further along in this section.
Unsupportive things you want to avoid saying:
God only gives you things you can handle.
It will make you a better person.
I know what you are going through. (Dont say this
unless you do.)
Special kids are for special parents.
I dont know how you do it.
Tomorrow is another day.
Everything happens for a reason.
Unsupportive comments after losing a child
Comparing their loss to the loss of a pet.
That its Gods will, or that its for the best.
He/Shes in a better place
Do you think you are depressed?
Are you better now/yet?
Are you over it?
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the battles that both girls have faced and are going to
face throughout their lives. But Ive always been in awe
over how this couple always saw the light at the end of
the tunnel. Instead of looking at what could be or what
could happen, they embrace each challenge and have
always had the best attitude about how they can help
their girls now and what they can do to give their girls
the best possible outcome and best future possible.
137
A LETTER TO SANTA
The true meaning of friendship and Christmas is
captured in a note to Santa from eight-year-old Grace
Metcalfe.
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Stories of bereavement
Whether the death of a child was sudden or if it came after a long illness or injury, it is a tremendously
difficult situation to deal with.
Due to the complexity of neurosurgical conditions, death is a devastating reality that we need to address.
This section offers helpful suggestions and resources, words of wisdom and stories.
This section was written by Melinda Elgot and Trina McCartney in loving memory of Naomi and Katelyn
and is dedicated to all the beautiful angels of pediatric neurosurgery.
Stories of Bereavement
HELPFUL WEBSITES
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Stories of Bereavement
Robert Carter
Stories of Bereavement
Stories of Bereavement
wife and kids, and myself. It was one of the best decisions
I have ever made as it helped us to begin healing as a
family, and took the load of daily life off my wife, at least
for a while. There will always be emptiness in our lives,
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Stories of Bereavement
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Notes
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CHAPTER 6:
Additional Resources
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168
CHAPTER 6:
Additional Resources
SECTION 6.1 ACKNOWLEDGEMENTS
A doctor once told me, Your son will not live an ordinary
life. He was right: my sons life is nothing less than
extraordinary. Thank you to Jacob and Joshua, for whom
Im inspired to be the best I can be. You are truly my two
angels. Thank you to my husband, Danny, from whom
Ive received unconditional love and great strength. To
my parents, Kim and Annette, for not only walking every
step of this difficult journey with me, but also for carrying
me through the hardest times. Thank you to my fatherin-law, Manuel, for your quiet comfort and constant
support, and to my family, my Portuguese family, and
my friends: thank you from the bottom of my heart for
your support and love. To my best friends, Carla, Jamie,
Jill, Stacey and my sister Tammy words will never be
MELODY WILLIER
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Ryan Girard
Ryan Girard
This book is a labour of love, and it wouldnt be possible without the invaluable contributions of so many.
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THANK YOU
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Ryan Girard
Acknowledgements
Acknowledgements
Memorial Garden
Parent/caregiver/sibling support group is a support
program that meets up to four times a year in a laidback and fun atmosphere.
Research/Alberta Pediatric Neurosurgical
Database supports research that is essential to
best practices in providing children with the best
possible treatment. Research is a key component
for gaining knowledge and providing medical teams
with the information they need to establish new
guidelines.
Website-Parent Support/Physician Broadcasts is a
cyber-home for our patients, families and medical
staff to come together and gain knowledge.
FOLLOW US at neurosurgerykids.com
FACEBOOK: facebook.com/neurosurgerykids
TWITTER: @neuro_kids
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Monika Melnychuk
Olivias Journey features excerpts from Wendy Beaudoins blog, which details her experiences with her daughter
Olivia as she undergoes surgery. You can read more and follow along at facebook.com/neurosurgerykids
Olivias Journey
JANUARY 2, 2014
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Olivias Journey
JANUARY 3, 2014
Olivias Journey
JANUARY 5, 2014
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Olivias Journey
JANUARY 6, 2014
Olivias Journey
JANUARY 7, 2014
Olivias Journey
JANUARY 7, 2014
JANUARY 8, 2014
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time she opens her eyes until she goes to the operating
room, out of fear. She will plead for me not to take her,
then get mad and then cling to both of us as we walk
down the long hall to the operating room.
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Olivias Journey
JANUARY 9, 2014
Olivias Journey
Olivias Journey
Tags: normal
Olivia and I have always had this tradition of late-night
movies and popcorn when she is in hospital. I crawled
in bed with her and after some fidgeting and fussing
around so we were both comfortable, she started the
movie. I asked her what she had picked and she said
the movie was called Koala Kid. She explained that
the movie is about a koala that is white among a pack
of grey koala bears and he doesnt fit in so he joins a
carnival. For as long as I can remember my kids have
had this sort of odd tradition of picking a character to
be in every movie that they watch. Its not that they
do anything with the character they have picked, like
acting out the role or saying their lines, its just who
they identify with. At times this has caused some
serious meltdowns and occasionally almost leads to
blows, as there is a cardinal rule that two people cant be
the same character.
Olivias Journey
Tags: waiting
Sweet Olivia is in the operating room....
The Compass
163
Olivias Journey
164
work for you and your child is critical. I have learned this
skill from watching countless parents do it poorly and
others who are absolutely amazing at it. At times I think
people equate advocating for your child with controlling
the entire medical situation. This isnt the best way to
ensure your childs care, or the best way to save your
sanity. Not trying to control the situation is not the same
as being uninterested or uninformed. I always have an
opinion about what she needs. The difference is that
instead of trying to learn more than the people who have
spent their lives learning neurosurgical procedures, I
have become an expert in her.
I know Olivia inside and out. I know when she is
good, when she is off, and when she is really sick. I
know her medical history, although at times even that
can be a huge amount of information to sift through.
I know to bring her in for a checkup or follow-up
when she is feeling great, because even though going
to another appointment is the last thing I want, her
medical team needs to see who she is when she is great
so they can remember what we are all trying to achieve.
I know when to stand my ground and when to listen
because I may not be able to see the entire situation
objectively. On Monday when her neurosurgeon told
me she needed to go back to the operating room, I
knew she wasnt well when she was standing upright,
but I left him to chart the course of actions. The
decision was easy. I have learned that relying on the
team doesnt mean you are weak or uninformed or
uncaring. As parents we sometimes put a tremendous
amount of time and energy in to researching our childs
conditions and possible solutions. Education and
information is power. It is equally important to make
sure you assemble the right team for you and your
child, a team that fits your beliefs, your thoughts and
your needs. Taking the time and energy to do this will
not only help save a bit of your sanity, but it also means
even when you are burnt out or exhausted, your child
will receive the very best care from that team, since they
are as invested as you are in her health and happiness.
The valve in Olivias spine is fixed. Its back to bed
rest for at least a week to try to get the incisions to
heal. I had a night of nausea and general grumpiness.
Im not sure if she is getting the flu I had. I sure hope
not. Operation number 31 is under our belt. Lucky
number 31? I hope so. Thanks so much to everyone for
your thoughts and prayers over the past few weeks. It
constantly amazes me how good people really are.
The Compass
Olivias Journey
Tags: friendship
I had a panic attack last night. All of a sudden at 10
p.m., the light at the end of this particular hospital
admission seemed to go out for me. How is her back
possibly going to heal? If it does heal, what if it doesnt
work? In the midst of my panic I sent out two SOS texts
to very good friends hoping one of them happened
to have their phone on. Instantly my phone binged
twice. Both were awake. Both wanted to know what
was going on. As I spoke to one of them and texted
the other I realized how much art there is to being the
friend of a chronically ill child. One of my friends went
over the medical details with me, both of us trying to
determine if there is a medical reason for my panic and
the other one texted me to breathe and try to relax.
Both recognized it was late and I was tired, but both
took different approaches to get to the same point: we
are here for you and you will get through this one way
or the other.
You can Google what to say to the parent of a
chronically ill child. You will instantly get thousands of
hits of blogs or lists or articles on what we all want you
to say to us when we are in a crisis situation. There are
an equal number of lists of what not to say to us when
we are losing our minds. Sometimes when I read them I
think, Who the heck would ever want to be the friend
of a chronically or acutely ill child? There are so many
rules about what to say and how to say it, things that if
you dont do them exactly right we will surely implode
and never recover.
The truth is, most, if not all parents of a chronically
ill child are unbelievably strong, they just might not
know it yet. Thats where friends and family come in.
Lists of what you should or should not say are good.
Not great but good. They are generic and generally a
common-sense list of statements that help if you have
never been around a sick child, or sick person for that
matter, in your entire life. I hesitated to write a note on
this topic for fear that all of my friends and family are
going to worry that I mean them. In truth I am very
lucky. My friends and family have been doing sick
with me since Olivia was born and have come to do
it really well. The thoughts in this blog are just that,
thoughts. They are not rules, or lists or anything of
that sort for people to live or die by. They are simply
things friends and families have done in my life that
have left an impression on me. If you are reading this
and are a friend of mine, youre totally not the example
of what not to do. That is that other friend I have.
You know the one...
For me, being the friend of someone with a sick child
starts with a conscious decision you have to make.
Are you in or are you out? Are you totally in? Neither
answer is wrong. Where I think harm can be done is
when you sign up for one category and then when the
The Compass
Olivias Journey
166
Y
ou made a point to visit us in the hospital once a week.
Y
ou cut your visit short when you saw it wasnt a great
day, even though you drove 35 minutes to get here.
Y
ou dropped off a meal for us when we got home.
Y
ou went late to a party when you saw I needed to chat.
Y
ou discretely stepped out of the room for a few
minutes when bathroom time came
Y
ou never say you know what I am going through.
Y
ou took my other kids out to an event.
Y
ou took my shopping list (and money and bought my
groceries).
Y
ou stayed away when you had a cold, but still called
me.
Y
ou keep in touch with calls, texts, Facebook and words
of encouragement.
The Compass
Olivias Journey
The Compass
167
MAP
SITE
GE
Walter C. Mackenzie
Health Sciences Centre
87 AVE
87 AVE
Jubilee
Auditorium
Lister
Hall
OPR Outpatient
Edmonton
Clinic
North
Residence
College Plaza
Public Parking
Entrance
Medical Sciences
Building
WALTER C.
MACKENZIE
HEALTH
SCIENCES
CENTRE
Future Site
Pedestrian/
LRT Crossing
P
EMERGENCY
84 AVE
OUTPATIENT
RESIDENCE
HEALTH
SCIENCES
LRT
RTF
85 AVE
Clinical
Sciences
Building
83 AVE.
Blood
Donor
Clinic
Staff Parkade
Public
Parkade
Aberhart
Centre
CP
ST
Corbett
Hall
Cro
Can ss
Institcer
ute
83 AVE
117
86 AVE
Zeidler
Ledcor
Centre
117 ST
CP
HRIF
112 ST
Building
114 ST
Heritage
Medical
Research
82 AVE
P
UNIV
ERSI
TY A
VE
IC3 PRE-ADMISSION CLINIC is located immediately to the right through this entrance
Stollery Childrens Hospital EMERGENCY ENTRANCE
The SURGERY CLINIC is in the Clinical Sciences Building, on the main floor behind the elevators
The PARKADE and the hospital are connected by a pedway
168
The Compass
ABA
Adm
Adm
Adu
Ber
Cas
Clin
Clin
A
A
C
D
F
M
M
P
P
S
S
Cys
Day
Day
Der
Diag
EEG
Em
End
Fac
Fac
Foo
11
C
C
H
M
Tr
LEVEL
Walter C. Mackenzie
Health Sciences Centre
0E2
0E1
Elevators/Stairs
Security has
LOST AND FOUND
Public Route
0D2
Washrooms
0G1
Parking
0H1
0D1
0H2
0C3
5 Shaw Interactive
Theatre
6 ABACUS
0C2
0H3 /
0H4
0J1
3 Human Resources
4 Shipping
& Receiving
1 Security Office
2 Parking Office
N
0A2
0A6
7 Health Records
0A1
0A3
0C1
0A8
0B2
0B3 /
0B4
CSB
Clinical
Science
Building
0B1
The Compass
169
LEVEL
Walter C. Mackenzie
Health Sciences Centre
Elevators/Stairs/
Escalator
1K
Zeidler Ledcor Centre
Public Route
1E
Information
1 114 St Entrance
2 Stollery Entrance
4 Admitting
1
5
$ ATM
To get to EEGN(1A5)
AND STOLLERY DAY
SURGERY (1A7) go in the
112 Street entrance and
turn left immediately
1J
1H
1C4
57-3/8
57-3/8
8
1A1
1A5
1H
1A2
1C3
1C2
1G
STOLLERY ENTRANCE
This entrance faces
the LRT station on 114
Street. Immediately
inside this door is the
1C3 PRE-ADMISSION
CLINIC
F
M
O
1D
5 Mazankowski
Entrance
6 Emergency
Entrance
7 112 St Entrance
1F
3 MRI
1C1
1A7
OutPatient
Residence
1A6
EMERGENCY
1A3
1A8
1B
1U
10
CSB
Clinical
Sciences
Building
11
170
Adm
Adm
Ber
Cas
Clin
A
Washrooms
DI
MAP
REF.
The Compass
P
P
P
T
Cys
Day
Day
Dia
ECG
EEG
Em
End
Foo
1
C
H
M
T
LEVEL
Walter C. Mackenzie
Health Sciences Centre
Elevators/Stairs/
Escalator
MAP
REF.
2K
Public Route
Atrium Area
2F
Washrooms
1 John W. Scott
Health Sciences
Library
2 Faculty of Medicine
and Dentistry
2E
4
2G
Pedway to Parking
3 Diagnostic Imaging
$ ATM
2D
2
2H
2C1
3
7
2J2
2G2
2A1
2A2
2C2
2C3
2A5
2A6
2A3
2A9
2A6
2A7
2B
Out-Patient
Residence
CSB
Clinical
Science
Building
10
A map is located at
the back showing the
route from the clinic to
DIAGNOSTIC IMAGING
11
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171
LEVEL
Walter C. Mackenzie
Health Sciences Centre
Elevators/Stairs/
Escalator
3E
3F
3D
3G
Public Route
Atrium Area
Washrooms
3H
3A1
3C
3A2
3A9
3A3
3A5
3A7 / 3A8
3B
3A6
CSB
Clinical
Science
Building
172
The Compass
LEVEL
Walter C. Mackenzie
Health Sciences Centre
SCHOOL
MAIN GLASS
ELEVATORS
Elevators/Stairs
Public Route
4E
4F
4D
4G
Atrium Area
Washrooms
1 Level 4 Atrium,
Labyrinth &
NKF
COFFEE
STATION
Patient Library
4H
4A2
4C
4B
4A5 / 4A6
4A4
4A9
HEALING
GARDEN
STOLLERY
BEAR
ELEVATORS
4A7/4A8
CSB
Clinical
Science
Building
The Compass
173
LEVEL
Walter C. Mackenzie
Health Sciences Centre
Elevators/Stairs
Public Route
5F
5E
Atrium Area
Washrooms
Chapel/Prayer
Centre
5G
5D
N
5H
5A2
5A1
5C
5B
5A5 / 5A6
5A4
5A9
5A7 / 5A8
CSB
Clinical
Science
Building
174
The Compass
GENERAL DIRECTORY
LEVEL
ABACUS
Administration
Admitting & Registration
Adult Echocardiography
Bernard Snell Hall
Cashiers Office
Clinical Engineering
Clinics
A.H. Owen & Family Stroke Prevention Clinic
Adult Pre-Admission Clinic
Cardiac Outpatient Services
Dental Clinic
Family Medicine Clinic
Medicine Clinic
Metabolic Clinic
Seniors Clinic
Surgery Clinic
Cystology
Day Surgery
Day Ward
Dermatology Clinic
Diagnostic Imaging
EEG Lab (Radiology)
Emergency Department
Endoscopy
Facilities Management
Faculty of Medicine & Dentistry
Food Services
112th Street Grill
Cafeteria
Caffe Fantini
Healthy Trendz Cafe
Mr Sub
Trendz Express
The Compass
0
1
1
1
1
1
0
1
2
2
2
1
2
2
1
1
CSB0
2
1
1
1
CSB2
2
1
1
1
0
2
1
1
2
1
1
1
LEVEL
Friends of the University Hospital (Volunteers)
Gift Shops
Bearyland (Stollery)
1
1
1
0
5
4
2
4
0
1
1
1
OPR
0
1
1
1
5
1
2
1
5
0
0
1
1
1
1
CP
4
CSB1
1
1
2
175
DIRECTIONS TO DIAGNOSTIC IMAGING AND MRI FROM THE PEDIATRIC SURGERY CLINIC
176
STEP 1
Turn right
coming out of
the Pediatric
Surgery Clinic.
STEP 2
Continue down
the hallway and
turn left at the
exit sign.
STEP 3
Go straight all the
way to the doors.
STEP 4
Go through these
doors.
STEP 5
Go straight
through these
doors and head
to the left.
STEP 6
Walk ahead, past
the Caf, through
the doors.
STEP 7
Continue
through these
doors and look to
the right.
STEP 8
Take this elevator
to Level 2.
The Compass
Directions to Diagnostic Imaging and MRI from the Pediatric Surgery Clinic
STEP 10
Continue down
this hallway and
turn right at
the end and go
straight.
STEP 9
Once off the
elevator, head
straight through
these doors.
STEP 11
You have arrived at Diagnostic Imaging 2H. Check in
at the registration desk. Diagnostic Imaging is the area
you will go to if your child requires a CAT scan. If you
are looking for the MRI department please take Stollery
Elevators immediately in front of the Diagnostic Imaging
to the main floor.
The Compass
STEP 12
On the main
floor, you will see
Admitting and
Registration to
the right of the
elevators. Walk
in that direction.
STEP 13
You will see this
sign straight
ahead.
STEP 14
Follow the arrow
to the right and
walk to the end of
the hall. At the end
of the hall, turn
right. You will see a
set of sliding doors
and glass blocks.
If you see this, you
are headed in the
right direction.
STEP 15
Right before
you reach the
doors, you will
find the MRI
department
on the left-hand
side. You made it!
177
Notes
178
The Compass
The Neurosurgery Kids Fund is a group of professionals who are dedicated to enriching
the lives of children with neurosurgical conditions, supporting their families and providing
world-class neurosurgical care at the Stollery Childrens Hospital in Edmonton, Alberta.
The mission of the NKF is to help pediatric neurosurgical patients and their families navigate
their medical journey with as much support, information and resources as possible.
For more information, visit neurosurgerykids.com or call (780) 913-7346.
@neuro_kids
facebook.com/neurosurgerykids
Cover illustration by CHRISTIANE BEAUREGARD