Dealing with Medical Situations and Hospital Stays
Hospital Survival Tips and Emergency Information
Pat Tombe
Pat Tombe is a Foster Parent with 11 years of experience with emergency trips to Children’s Hospital Emergency (ER) and countless 911 calls. She quickly realized that she needed a plan that the ER Staff could read and understand. It needed to include all the information that they keep asking for from the early years of her child to the present, something they could photocopy for their files. With this information in place ahead of time all she would have to do is repeat what happened on this particular trip into the ER. Pat knew that this would keep her stress level down so she could comfort her child. We asked Pat to share her forms. We invite you take the forms and make them your own.
As Pat says: You have to deal with many doctors, nurses, Intravenous nurses, social workers, etc. while trying to keep your family informed. You’re trying to be calm for your child’s sake and not let him or her feel the tension that keeps growing inside of you because you are so worried about her and dealing with the Medical staff.~ The amount of times that you have to keep repeating the same information over and over and all you really want is for them to make your child better. Here are some ideas that have worked for me while we are in the hospital:
1. Highlight specific information about your child using 8x10 bright colour paper and post them all over the room. These signs will catch people’s attention about the important things they need to know. Keep it simple and direct.
a) On the door coming into the room, post a sign that says is I am Deafblind. Please let me know you are here by…
b) Post one over the bed with critical life threatening information, such as “NOTHING BY MOUTH”
c) On the IV pole. If is going to have a needle, please do the following…
d) Any other information about your child the staff should know:
2. Put up a poster showing how your child communicates. Use photos to show body language, etc.
3. Put up a picture of the child when he/she is healthy – a big smile, bright eyes. This opens the door for communication, with their name under the picture, "Hi, I’m …….."
4. Keep a bag of cookies on the hospital tray with a sign on bright paper that says “Would you like a cookie?” It’s amazing how many nurses come into your room to talk to your child.~~
Hospital Intervention
With a Child who has Deafblindness
By Gillian Croft, Parent
Suggestions for Helping the Child to Cope
Routines, Anticipation and Communication
To help the child learn to cope with a hospital stay, use routine, routine, and more routine. Help him or her learn what to expect.
Always, always, always have a plan and a routine in mind for as many hospital procedures as possible.
Start working with your plan BEFORE the child is in hospital. Teach the child what to expect. Set the scene for success.
At the very least, make sure the child has a symbol and is familiar with the key words that will be encountered at the hospital, so you can pair them with the event. Example: Blood test, hospital gown, owie.
It is a lot easier to be told you are going to experience a “little” owie rather than a “big” owie. Think about how you would feel if the needle was about to go into your arm!
Adjust the amount of information you give the child to match the child’s developmental level. Example: “Tickle-beep” is a good name for an under-arm thermometer if the child is very young. It can be an effective distraction in some cases.
As the child matures, start to pair this word with the correct name for the object.
Use explanatory and communication symbols that you are likely to find in the hospital environment. Chances are that if the child is rushed to hospital, all of his or her cues may be left at home.
Establishing a Feeling of Safety for Your Child
Comfort Cues
a) Find a way to “ground” the child in any situation, and in any environment. For some children, this could be a soother or a toy.
b) A very effective way to ground a child who has some functional hearing is to have a song as a symbol or signal of “safety”. Find a song the child likes and practice singing it in case a CD or tape player is not available.
Pair this song with situations of comfort to “train” the child to calm down when listening to the song. For example, you can play it every time the child’s out patient blood test is over, giving the child a cuddle or a hug at the same time.
c) You may want to have a special blanket with a unique cuddly feel that you use only in this circumstance. Cover the child with the blanket when the blood test is over and he or she is feeling safe.
d) Even better, use multiple cues such as the song, a special blanket, a soother and a special toy.
Use the cues in the exact same way in hospital, only giving it to the child AFTER the blood test. Do not use the cue as comfort during the procedure.
Establish a “Safe Zone”
A “Safe Zone” is a place where the child can retreat to, such as the hospital bed – a place where they can relax and know they are safe. This means no medical tests, etc. take place in the child’s bed. It may seem like a lot of effort to take a feverish child out of bed for a blood test, but in the long term the “SAFE ZONE” of the bed will become a sacred concept! Using the bed as a safe zone will be to your advantage in the same way you use tangible cues.
Give the child as much comfort and cuddles as he or she needs. You can never overdo giving a child comfort.
Be Honest
Never lie. The child needs to have as much control over his or her environment as possible. The child needs to be prepared for all actions. Give him or her that control. Tell the child what will happen in clear simple language. Use touch cues, object cues, picture cues along with sign and the spoken word. Repeat yourself during the procedure, and use anticipatory phrases. Tell the child when the procedure is over in a way that makes sense to the individual.
Use tangible cues to tell the child that a procedure is starting/finishing.
Always point out when a child is coping well.
Touch cues, object cues, sign and voice can all be used to convey comments like “brave”, “fantastic”, “wow”, and “well done”.
If something is particularly horrible, you could say or indicate in someway, “That was a big owie, but you were so brave! Well done.”
Give the child’s coping skills and behaviours (even if they are few and far between) more attention than the events themselves by drawing attention to them with lots of praise. By doing this, you will help your child to develop a cognitive picture of him/herself as being able to “cope”.
Dealing with the Emotions When you Come Home
After the hospitalization, continue to talk to your child about the event. Take some of the cues home with you and make an experience book.
Coping is an emotional experience. Talk in an upbeat way to the child about how she or he may have felt. Sometimes you may be surprised by the child’s reaction. Even though he or she may not use words, there may be some indication of what the experience was like for the individual.
Acknowledge the child’s emotions. Use terms such as “owie” and “sad” if they are appropriate. Always end your talks on a positive note, using terms like “brave” and “happy again”.
Pay Attention to Your Own Feelings
If something is very painful for the child and you are upset, tell the child how you feel. A simple, “Johnny’s sad and Mommy is sad too,” may be all that’s needed. You might even say, “When you cry, I want to cry too!” By acknowledging your feelings, you are teaching positive coping skills to your child.
Medical Information Forms
These forms are a culmination of the work done by the following people:
Wendy Bystedt, Emma Dyck, Ellen Faustman, Sue Gawne, Alicia Harris, Robyn Lund, Lenora Spencer, Theresa Tancocks, Pat Tombe, Lee Wilcox, Linda Mamer, Joyce Olson
The following section provides blank forms that can be copied and pasted into a document on your computer, so you can make changes specific to your child's needs. Use what works for you, feel free to add or delete sections in creating your own information package. We suggest you create one page that can be read quickly with critical information, then provide additional pages with more details. Some parents have laminated the one or two pages for ease of sharing the information.
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IMPORTANT INFORMATION
Hi, my name is ______________. I am DEAFBLIND.
I can hear
I can see
I have an allergy to
My Medical Diagnosis is
• I require the following medical management:
Medications:~
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Times Given |
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Health Care Card #
Contact Information
Child:
Address:
Birth Date:
Parents:
Address:
Phone Numbers:
Home:
Work:
Cell:~~
Social Worker:
Address:
Phone Numbers:
Home:
Work:
Cell:~~
Other: (position) :
Address:
Phone Numbers:
Home:
Work:
Cell:~~
My Child’s Communication Needs
Deafblindness is an information gathering disability, so I need help in receiving information.
These cues help me understand what is about to happen. Remember, I can’t fully see or hear you. I don’t feel well, and I’m scared. I don’t know who you are or what you are going to do to me. Please take your time and use these cues to let me know what’s happening.
Let me know who you are by (give specifics)
Use these cues to let me know what’s happening:
Example: Taking my Blood Pressure |
Let me touch the cuff. While I am touching the cuff, place your full hand around my arm where the cuff will go. Give me time to feel your hand on my arm. |
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Understanding What I am Communicating
When I do this |
I am saying |
You respond by |
Example: When my bottom lip comes out |
I am scared |
Slow down and let me touch your hand |
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Detailed Medical Information
Medical Diagnosis:~ From birth to present
Specific Health Needs: At present
What You Need to Know about My Child
a) Positioning
b) Feeding / Eating
c) Toileting
d) Sleeping
e) Visual Ability (include if child wears glasses while in hospital)
f) Hearing (include if child wears hearing aids while in hospital)
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My Doctors
Doctor:
Specialty:
Why they see me:
Operations performed:
Address:
Phone number:
Fax number:
Doctor:
Specialty:
Why they see me:
Operations performed:
Address:
Phone number:
Fax number:
Doctor:
Specialty:
Why they see me:
Operations performed:
Address:
Phone number:
Fax number:
Doctor:
Specialty:
Why they see me:
Operations performed:
Address:
Phone number:
Fax number:
My Community Medical Team
Name:
Position:
How they are involved:
Address:
Phone number:
Fax number:
Name:
Position:
How they are involved:
Address:
Phone number:
Fax number:
Name:
Position:
How they are involved:
Address:
Phone number:
Fax number:
Name:
Position:
How they are involved:
Address:
Phone number:
Fax number:
Previous visits to the hospital
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Length of Stay |
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911 calls into the ER
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Watching Me Grow
This section gives medical staff a chance to see your child as a person. Include baby pictures, pictures of special occasions, fun times, show some of things your child enjoys.
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Sample of
IMPORTANT INFORMATION
Hi, my name is _________. I am DEAFBLIND.
I have an allergy to _________.
I require ________________________________________________.
Deafblindness is an information gathering disability, so I need help in receiving information.
Approach me from the front. Say, “Hi, ___________.
It’s Dr./Nurse____________.”
Make my name sign on my chest, by………..
 (Provide a written description ofhow to make the sign to accompany
a photo. Example: Use a closed fist
with your thumb on the outside (in sign
language this is an “S”) and tap
Sam’s left shoulder twice.)
Use a firm touch on my hand.
Face me at eye level to talk or show me things close to my face.
Speak in clear, calm, simple sentences.
When I start to pout my bottom lip sticks out, I am telling you, “STOP! I don’t like that. I am about to get very upset.”
To help calm me down, stroke my hair.
I cannot take any food, liquids or medications by mouth.
Please keep me in a reasonably upright position so I don’t aspirate.
I have several other medical issues. Talk to my Mom or Nana and ask for details before you approach me.
I have a treatment plan involving specific routines for:
- Blood Tests - Mealtimes
- Physical Examinations - Approach by staff
- Administration of Medication
(Further Information Attached)
I am learning to cope in this environment and your help would be appreciated.
Thank You.
Example of One Page Information Sheet
Name:
DOB: Care Card Number ______________
Parent:
Home Address:
Parent’s Cell Phone:
Home Phone:
Work Phone:
Emergency Contact in Vancouver
Name:
Relationship:
Address:
Phone: Cell:
Health Issues:
Deafblind – functionally deaf, blind, and non-verbal
Cerebral Palsy - Spastic quadriplegic – Severe latex allergy
G-tube fed (nothing by mouth) (see daily meal/med schedule)
Medication:
Acyclovir – 5ml twice a day
Losec – 40mg once a day
Lupron – injection every 3 weeks
Meds only given by g-tube or suppository
Doctors:
Dr. S., family physician, (phone number)
Dr. B., orthopedic surgeon – (phone number)
Dr. L.S., Endocrinologist – (phone number)
Dr. E.H., Gastroenterology – (phone number)
(all at Children’s Hospital, Vancouver, B.C.)
Therapist/Wheelchair positioning/adaptations:
J. Es, OT, phone number
(Sunny Hill Health Centre for Children, Vancouver, B.C.)
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