utube video emma scoliosis journey
many errors in this but wanted to get it all down written
Surgery pre and post too
Lessons learnt
- always support others every
step of the way and offer to bring meal first night home !
- I want to make major impact
in peoples lives and help them get through most difficult times of their
lives
- There is a higher power and
i choose to call her/him Your holiness or heavenly father or sam nai I
pray a lot now and get on my knees when desperate
-I have the best husband ever ever who is capable and strong and loving
. I chose the best and hope kids do the same one day
- The present is all we have
- even when things seem will
NEVER get better They will for sure
- Life is fragile so celebrate
any and every moment
I will be a better wife and mom after this
I will be a millionaire in my career as will provide the result everyone
wants in life
Water helps nerves and healthy foods and fruit vs anything not healthy
I will forever be grateful for the Shriners
Things about this process that surprised me :
How petrified she was going in
How anxious she was after first 3 days and looked like could barely move
eyes and neck an inch or even have us touch side of bed
How alert she was and didn’t sleep half as much as other girls did in
hospital stay
Was so less willing to try movement than I thought would be .
The incident was shocking on every level
Her off morphine so so soon ( by day 5 ) was shocking
Not even taking that much advil and tylenol
When turned a corner for the better started going really fast recovering
Her not caring rob seeing naked
By 6 .5 weeks seemed mostly back to normal in so many ways
Pre surgery and she in hospital :
Pizza dinner night before surgery in hospital and closset I have ever
seen my kids and my mom here and just so much love
All hugged each other and us and the I love you all over and just a
beautiful send off before surgery
Cassie and Liv like 3 kittens in Emma hosital bed cuddling before
surgery
All the amazing emails and texts and social media posts
Emma and giving her airpods ans hour before surgery and her loving them
so much
Our new friend Tina bringing sock slippers and candies to Emma
When Dr Ouellette came in room 2 hrs pre op in his jeans and leather
coat and was just so reassuring and strong and competent ( and gorgeous ! )
The Italians anathesolhiat ans love every single thing about this man .
He was so funny and and so tender and affectionate ans clearly so skilled ans
competent and made it all ok . When he took of his har and said “ am I senior
enough for you ? “ white hair under !!
The way he stroked Emma face and held it and circled it within his hands
and the way he touched her nose like a little button . I had the feeling she
was a fine masterpiece of art or a newborn baby in his care that he loved and
cherished and it made the worst moment of our lives so far bearable on every
way
Me hearing the whisper getting louder in my mind of career and meaning
Me waking up day of hospital and having such unexpected clarity on what
it is I do and want to do “ to masterfully coach people through the moat
important events and decisions of their lives “
Day of surgery
Waiting for Emma on surgery and it feeling ok the first couple of hours and
even a bit of peace both of us
Hearing huge bouquet of flowers in room from uncle Gerry with a lovely
note
Michael and Vanessa coming for lunch and lending us nanny near to keep
us . safe
Within very short tome of van and Michael arrival the pager going off .
2.5 hrs after she went on .... they said no check on mid way ... only when over
and surgery expected to be 5-9 hrs ?? I lost it and had closet thing to panic
attack and hyperventilating ever had as couldn’t find them to speak to and recovery
didn’t know why I was pages .
Van and Michael and Rob there by my side as was losing to and holding me
. Head nurse came to see us and said all was ok and that surgeon was done and they
were now sewing her back up !!!!!!!! Over !??????)
Dr Ouellette coming to say was done !!! A success and t5-l1 vs 3 more (
t3-l2 ) picture with him
After he left said would be 30-60 mins before we saw her but was 2hrs so
I got worried but she was being sewn up longer I guess and longer in recovery
Recovery room
Emma telling nurse she was not ready to see us
Emma saying to nurse that we could come but not touch her
Emma :
Was in Ecr class and got a bonne note
That she wanted Benadryl everyday
Says “ hi “ out of the blue
Very very itchy for 24 hrs post
Wanted to go to her room where more light ( ps sun pouring through to
recovery room )
5pm - day 1 post op day 1 post surgery
See blog for 20 hrs post op
Super stiff
Super terrified
Dizzy
Irritable
Terrified
Pain 6 /10 usually
Morphine in spine 24 hrs so pain more manageable but still very looks
We cant even touch side of bed
She looks like would never move body again or her head or neck or eyes
Looks traumatized
They try to get her up and there is no way so scared of passing out and
throwing up and of life
Sat up
Day 2 post op
Lots of pain . At one point went up to 7.5/10
Being turned over on night is worst trauma for her
Monitoring all the time night and day
Breathing every hour and physio exercises
Two nurses turning her over in night and she is so scared
Her waking up to throw up
Her waking up to say leg numb
Always has sparks in her back
Barely moves even head so afraid
So much nausea
Got up twice and took 4 steps each time and super nauseous and takes
forever to have 2 nurses get her up
Sponge bath
Took off bandage scar and was terrified but didn’t hurt
Scar all bandages but looks much shorter than we expected. Don’t see any
blood beneath bandage !
Day 2 to 3 overnight
I slept here again so third time and rob once night of surgery over and
the nurses told me to sleep in family room and have a good sleep as snore and
wake up Emma and nurses and Emma wake me up all night
Emma all day 2 super anxious and terrified
Barely speaking and rude and irritable and weird faces etc.
That evening asked me to hold her hand a few times when in massive pain
DEA came visit
Live told me Emma facetimed her . I felt wo happy going to sleep
I left to sleep in family room after she was asleep and first time since
after surgery felt like it may be better ok . I slept 11am -8:30am with only
one wake up . So dark in there so slept in and could not believe it was 8:30am
!!
Ran out of that room to nurses station to ask how her night was . Same as
other night pain around 5-6 and turned her over and she was angry when did that
Day 3 8:40am
Go into Emma room and say hi darling but don’t go to bedside as student
nurse there interacting with her as Emma very nausea. I am bleeding as got
period so go into bathroom for 2 mins
I come out and heading towards Emma bed where she and student nurse are
and Emma says very nauseous. I arrive at her bed and she is staring straight
ahead eyes not blinking
I call her name nothing
Nurse calls name eyes straight ahead no blink
I run in hallways and scream she is not blinking
I come back still nothing and not responsive
I go in hall and scream again
Nurse screams in hall :(
I feel many people coming in room and dragging me out
I hear : code blue all report to Emily gosset room !! On hospital loud
speakers omg
I was dragged out of room and i am screaming do something!!
I crash to floor in hall and call Robert and say they called code blue
and she is crashing . He was terrified and drove here
Mj sitting with me in nurses room and mj with me saying dr Ouellette was
with her and medical team not responsive :((( she said her job was to be there
with me as she knew this was super hard for me and she had to be there for me
and support me ( for me clearly this meant dead or brain dead ) I honestly
thought life was over and it’s impossible to put into words what that feels like
. I truly kept pinching myself to see if a nightmare
Then I was screaming at mj ( my fave nurse practitioner and head of
scoliosis at Shriners and losing it and asking her to go and see Emma and give
me news )
She came back and said responsible finally ( partially as spoke but did
not know name etc or answer questions but spike )
I cried and cried of hoy but was still upset as thought brain damage .
Mj called rob on phone to say she spoke . Rob was hysterically driving there
from home . I felt so so s0 sad for him
Then surgeon came about 15 mis later and said fully responsive and spoke
and asked what happened and if mom and dad were panicking etc. . I was
soooooooo relieved it was surreal
Rob was ushered onto a room to meet surgeon and asked if he was Emma gusset
dad and was expecting the worst news and there I was with surgeon and mj and we
told him she was ok ❤️
We were given instructions to go see Emma and she asked to hold hands
and could tell never wanted to let go . She was highly highly stressed and
wanted to know what happened . We made it very casual and said that she was
looking ahead and not responding but all vitals good but team was worried and
surgeon called to check her out . Pointe finale
He still needed to rule out brain bleed so was taken to children’s for
mri . I was still with another head nurse calming down and so when came back in
room her bed and her were gone and my heart stopped again
An hour later we had results and no brain bleed
I truly believe I began to believe in god at that moment
Were told by surgeon conversion disorder he thinks ) follow up neuro
testing as outpatient just to be sure . Where body reacts to trauma and stress
in a psychological way but is totally psychological ( like woman lifting a truck
off of child or a patient waking up paralyzed and then fine a few weeks later )
I had strict orders from doc to tell Emma that all was fine and I was
going home to shower and get - massage and relax bc all was ok . I was so
traumatized inlistened as just wanted to get as far away from this stress as
possible as was about to crash
Left in taxi and asked mom to meet me at home and told her then boys
Came back in evening and she was back on track with her progress of day
3 . Catheter out .. iv unhooked ... morphine pills vs pump .... walked to end
of room twice . Sat in chair . Very anxious still . I was dying of anxiety. Rob
was better . My mom was in shock too as only told her that afternoon as not to
worry her . I reaches out to Leah and van and Michael and van tool me back to hospital
in evening and spent tome with me and rob and helping me with anxiety and
processing it all
Had been on morphine mixed with ketamine drip and then day 2 anesthesiologist
came as was in hall and was tough love with Emma and told nurses to up ketamine
and do separate drip ketamine and morphine ? Drug overdose ? Mistake of student
nurse ?
Day 4
I slept at home and felt truly traumatized and kept having her face in
my mind over and over no blinking
Had rob do more but relived him day 4 from 12-6pm alone and with my mom
who was amazing
Tiff came and cried
Tristan came and bumped his face with parking gate !!!
Mom was amazing with Emma and did her breathing and exercises and gave
her gifts and a yummy cookie
Rob left day to shower and work and relax a bit
Fannie Jealousy!!!
As of about 2pm she turned a corner :)
Started talking more and showing gifts
Asked for her brothers and ft nick :)
Wanted to play Jelly bean game :)
Showed me flowers Nathan brought and his mom
Asked to scratch a lottery ticket did I got her
Walked twice in day down hall !
Nurses dressed her
Asked to floss and brush teeth in bed
Let us go to dinner alone and watched a movie with loulis beside her
propped up
Held iPad
Texted friends
Facetime Olivia
Less anxiety for sure
Better mood with me anyways ( not so great with rob )
Stomach aches coming on ( likely from constipation )
I left at 10pm and nick got ne and ran up to say hi
I feel peaceful and hopeful tonight and on a better space
Day 5 post op
I took space today desperately needed for my anxiety. Slept and listened
to a podcast about work ( first thing ever did not related to Emma in 8 days )
Walked to village and had massage
Coleen picked me up and had great pep talk ( man we have great friends)
Asked rob if it was ok and he likes being there and has no anxiety so
doesn’t mind ! Was rehabilitations day and we thought best he and Emma having
me coaching afar by text than over their shoulders as rob much better with this
stuff than me
I am a mess since code blue and cant see to see her walk or poo or feel
pain . I am not doing well but she is thankfully
Today :
Shaddai came
Emma got out of bed and bathroom to pee with only minimal support
Emma walked down hall with little support on both sides to “ hair salon
“ and had hair washed :))
She sat up 10 mins in chair to eat but really finds it stiff for stiches
( has to do 30 mins before leaves hospital)
She Got period !!!
She looks more relaxed when asleep
Found out did not have morphine since 3am last night and have been
giving Advil and Tylenol etc. omg !!! This is really unheard of as usually
until post op 10 ... hope that keeps up
Given stool softener and no poo yet
I am back at hospital mid day
Liv coming at 5:45
Tristan and Sandrine will come for jellybean game and milles borne at
8:00 and me and rob will have dinner out
So so so appreciate rob in this omg
Cant wait to be back to some type of normal life again but also so
scared to leave the safety and security of hospital and nurses . Beautiful
place
Rob getting Emma huge bowl of bubble tea and it being to heavy for her
to lift
Liv saying “ Emma has to poo and I did ! “ ( meant put hand sanitizer on
but thought she was telling me she pood !
Me took so few hrs and took walk to village and got massage and colleen
drove me home . Felt human again
Emma and ft Simon
Emma walking down hall and asking me where the room I slept that night
before he incident was
One shoulder much higher than other still but Tina said will gradually
adjust to normal levels
Emma with liv and having normal conversations and smiles !
Tristan and Sandrine coming while we want to eat Indian and played cards
and farted a lot around them ! Sandrou made her laugh and it hurt her
Day 6 post op
Would have discharged today but we asked for one more night her as feels
safe and secure here
Did stairs pretty well !!
Went to vending machine cafeteria for chips :)
Came and saw me in healing garden solarium
Trying to poop and not working yet despite lots of meds for that
Off morphine!! Advil and Tylenol but not that often even . Pain is 2-3
Vagina swollen and rash on bum from bed
Had x rays and all very straight!!!!
Sits longer on a chair
Is in a better mood . Wanted tonight to relax and watch a movie
Nick cane for 2.5 hrs today and saw her routine which was good
She saw psychologist and so did I . I will have another session tomorrow
with psychologist before we leave
Psychologist said Emma is doing well and says Emma is not anxious and Emma
said not worried about her own mental health and says her parents aren’t
worried about the episode either
Eating food not a lot but often
Is 2 cm more than started which is fine as was already tall . Is not
just over 5”7
Weight 126 from 122.5 ?? Doesn’t make sense and guess it is the poo !!
Emma said the screws must weigh a lot :)
Good old fanny walking up and down that hall ! Nothing like some healthy
competition
Emma panicky when didn’t know where we were as I thought rob with her
and rob thought I with her but with psychologist. She was crying a lot
Went to vending machine caf and healing garden to see me
First suppository and first poo !
Said no friends and wanted to relax and watch a movie while we went to
dinner
Went to see the bed I slept in family room
Day 7
Discharge!
I had psychological appt with dr Linda was good
Rob washed her hair and I combed and blow-dried it
Changed dressing scar and she screamed so so loud
Last sponge bath ( rob gave dirty underwear to put back on !! )
Her in car so brave
Groceries arrived same moment she came home
Simon, dion , cassie and liv here 30 mins after arrived and video of
them laughing in bed
She gets up alone now !!!
Day 8 home
Good day and gets around quite a bit ( looking like a robot )
Walked in village quite far
Doesn’t ask for much pain meds in day ( more needed morning and evening)
Didn’t car that no friends came
Starting baby talk again
Had a great night and got up by self to get phone with her foot morning
Day 9 -
Woke up pain at 4 ( no meds for 9 hrs )
Did exercises and put own socks on
Hasn’t lost any weight yet
At hospital said :
Height 169.3 cm is 5”6 . 6 was . 171cm now 5”7.3
Went to kea and used wheelchair and bed there !
Pain was a bit more today and sore - maybe we are making her too active
now ?
Also had 3 hr visit today liv and charlotte
Had only 1.25 hr nap
Sits up much longer now
Still neck very straight and stiff
Day 10 Friday
Had shower first time and took of bandages
Simon visited
Mcdo for coffee
Walked to train up cedar and back with Simon
Went all day no pain meds since woke up 9am . Says sore between shoulder
bladed but not pain . 3-10
Will give pain meds only as needed
Doing really really well i think
Had shower and took bandage off of scar. Looks really good and now just
steri strips on it that will come off themselves
Didn’t take meds before bed as didn’t ask
Day 11 Saturday
Slept all night as usual . Woke up with saying 5/10 pain :(( she didn’t
even call me . Mainly shoulder bladed and upper back soreness
Gave full Advil and Tylenol doses
Weight 119 - so losing weight
Day 14 post op Tuesday
Emma is doing more and more
Taking therapeutic dose of Tylenol and Advil usually 1 time in 24 (
couple of times maybe 2 times ) says sore around shoulders and scar
Very stiff like
Will start trying today to do things like putting socks on while
crossing legs on lap and pulling seatbelt with arms etc. as Frederique mom said
to do that
I have seen her squat down a couple of times to get something etc.
Same as a few days ago
Does one outing a day
Gets lessons and sits
Sits for meals
- Lies down for breaks
- Sleep about 10 hrs a night
uninterrupted
My worries : inventing them as all on track but just cant figure her
moving normally really :( but she will
Worried that still has soreness etc. too but mj says normal in that area
Day 20
First time ever no meds for 55 hrs ! Big milestone as was always last
week 24 hrs or sometimes every 12 hrs
Day 14
Emma in front of me at bulk barn walking straight like a robot as usual
and then all the sudden her little legs just put a bit and I think she is dizzy
or falling and then she says “ I am doing a little dance to the music “ :)))
Day 15 post op
A much more anxious day for me and more pain for Emma
Had much more pain I shoulder blades and neck and was crying a little
and not feeling very well . I didn’t give meds right away as wanted to lessen
as was at almost a more constant 24 hr period prior days . Was a mistake as
made her angry and upset
Gave it to her 3 hrs later but she was upset
Mj answered that night what was all fine and shoulder blade neck is
normal and because new architecture on back and muscles need to adapt etc and
that made could fluctuate and some days make will ask for more and some days
less
She said she sounds as if right where she should be
Day 17
At cottage she moves her neck to the beat of the music a little and
looks at me and smiles :)
Where we are at day 17
Everyday since day after home from hospital have done an outing ( ikea ,
our friends home , resto , passport office , errand etc ) and most days has
also been some sort of walk for maybe 15 mins outside
As of day day 13 structure and stricter routine of :
Daily wake her up 9:30 ( 50 percent sometimes she is awake )
10:15 breakfast with dad that he makes
10:30-12:45 homeschool or activity with learning and some physio with
dad
12:45-1:20 rest
1:20 lunch with me and twice a week didi
1:45-3:15 time and lessons with mom or with me
3:15 -3:45 rest ( sometimes squeeze a nap on there is friends come a bit
later and have 45min to 1 hr nap but rare and should be
3:45-6pm or later as stay dinner 50 percent of time friends comes .
Cassie and liv math and art tutor each week . Friends come and stay dinner and
we go out ice cream
Evening relax
Shower most nights
Bed between 10:30 -11:30 dependant if had nap
She generally last week takes 2 Tylenol and one Advil one time a day (
time varies and sometimes twice a day but rare )
Sits up at meals and a lot on between
Rests on couch a lot
Goes out for errands and walking
Doesn’t complain much except started saying feels Rods somewhat and
upper shoulders and neck
If looking down to draw doesn’t like that feeling in neck and hurts
Doesn’t complain about walking
Gets tired
Loves being with friends
Is great with us
With mom still not so great :((
Shoulders one is raised more than other but gets a little better daily
Seems to love being home ?? Being with us !? Seems content and happy ?!
Very stiff looking
Does squat now when encourage her
Can’t do her socks
Started yesterday doing her seatbelt with effort
Puts pillow behind back for all but couple of days again didn’t bring
into restos
Gets snacks from fridge if we force her too
3 days now takes showers and lets water go on back a bit
No steri strips coming off yet at all
Me :
Was dealing with surgery super well
Even night before surgery slept in hospital
When they took her ok
Waiting ok
Then pager went off less than 2 hrs in and anxiety started
Then was ok as proved by me sleeping family room day 2 post op night
Then day 3 trauma happened :( code blue
Then horrible horrible for next 3 days
Then Under control again after psychologist and discharge
Was fine at home until bad day 15 she she had more pain and more meds
More anxiety
Then vision have had a few times since day 3 and thought was dream but
this now was as falling asleep and was awake and conscious and assumed real all
times happened ( illogical )
Realize as tired of dozing off there is another Emma . Maybe a twin ?
Another version of her ?
I have forgotten about her but realize she is coming home soon form
hospital and have not been there for her or visited her and makes me so sad and
guilty
She is coming to join this Emma and is another version of her or her
twin
She is in a hospital gown and completely unwell mentally and physically
but getting a bit better and is coming back to us and the well Emma
I don’t understand why I have not been there for her? I don’t get it ?(
but like dreams where I don’t understand why I don’t have a boyfriends ? ( aka
married ) or Why not looking after kids friends in my home sleeping or know if
they are there or safe ( aka they are not there )
So this time for first time as has been back of mind visions and
unconscious until now and I accept there are two Emma’s ( well Emma and very
sick Emma who is still in hospital) I question myself logically and awake for 3
hrs and realize there is only one version of Emma and she is well !! And ok !!
And recovering as should be .
I bid farewell to the other one as she doesn’t exist and tell my mind I
made her up . I release her
My theory : I think this is extreme disassociated thinking
To process trauma I made up and alternate Emma who is sick and unwell
and not recovering and left her in hospital:(( and have great shame of this as
never wanted to think about it again but then was told she is coming home in my
Visions
I had an image of the hospital gown Emma and the well Emma at home
recovering as a mirror and both hands entwined like fb ad of woman on wall but
both of them
Then realized the same person my Emma . She was unwell and now she is
well but all in one . I realized it was Emma who went through it and happened
and now it is over
Sounds super crazy I know but I think was a turning point for me to feel
less anxious now
Told rob and will tell my mom and will go back to psychologist but this
morning feel a weight lifted as realizing that my unconscious was still waiting
for the sick unwell hospital Emma to come home . Also realized I never did
abandon her and have been here by her side
Crazy I know !! But I figured it out
Day 23 post op April 11
No meds for 5 days now !!!! Woohoo !!!!
Just suddenly stopped asking! She also complains less about soreness in
shoulder blades and neck ( although says head heavy and weight on shoulders etc.
but doesn’t speak about it much
Says feels rods on back ( especially when no cushion behind her in
restos etc )
Looks a bit less stiff
Still holds shoulders quite uneven but working on it
Walks more ( last fee days about 30 mins with rob )
Seems to have less need for naps ( but still rests and sometimes takes
them )
Steri strips came off at day 21 and she wasn’t happy but went ok and
scar looks pretty good !
Last couple of days more normalcy around here and not thinking of her
24-7 which is short of a miracle!
I see the light for sure ! Things like way she cant bend etc are
becoming the new normal I guess
She visited csa for lunch yesterday and was scared in a big crowd but
then was ok ( had her paparazzi bodyguard her )
4 weeks post op April 16
1 month exactly since surgery. Emma really well and off all meds for 1.5
weeks now
Scar looks great
Given up naps half the week now
First night out at Simon house with friends there and out to bustan in
cassie car :)
Still tired alot
Hurts alot when sneezed today
Doesn’t complain much
Does alot more
April 25 post op 5 weeks and 2 days
All beautiful in X-ray they said
Very straight and 13.5 degrees thoracic and he said lower part is very
straight which they were not expecting so straight that it went back to
She is super super sensitive and almost crazy if someone even lightly
touches her back or scar
Can go back to school he said ( we will milk it and go may 1 for gradual
days 7 days and then Cuba for a week as a finale :)
Then back to school May 21 hopefully full time
She can start driving now apparently !
Swim at 3 months and nothing else until 6 months or a year . Even chores
mj said 3-6 months !!! Omg
She is doing great and visited the nurses
As of about 4.5 weeks started to go out to rugby games or friends a
couple of times . Then 5 weeks a movie and a party at livs :))
Week 9 may 11 2019
Went to Cuba ! Super trip !
May 21 week 10 - went back to school full time with a few accommodations
only . Has been 3 days and doing great . Had back hurt when took school bus to
play with csa but then it felt fine after
Drives to school daily for 4 weeks will have car
May 27 - will begin at McDonald’s 11 weeks post op 20 hrs training in a
school week . Will have accommodations. Will see how this goes !!
I think she has had sex with Simon too ...
she is functioning pretty normally it seems !
Weight 121 so a pound less than went in hospital. Bit taller but doesn’t
show much
Scar looks great and showed it off in Cuba
Week 11 post op may 27 started training at McDonald’s !!! All 20 hrs
after school and weekends in one week !! Omg . She is doing amazing
- said other day felt like
could bend a bit but we didn’t let her try
- Went in a jacuzzi
- - had to leave McDonalds
after a 6 hr shift training part stand and sit bit still !
- - still hates people
touching back as shocks etc.
- wearing open back gown to
prom
- amazing connected way more
to us
