Emma Scoliosis Journey 2109

all pics for this are on the tarinaw.com hidden part of blog that corrina can access

Title: While We Wait - Day Before Surgery
March 18

These blogs won’t be fancy or beautiful

They wont be edited or pretty and may have typos

They will be raw and real ... and where we are at

And often like this one - short and sweet

Emma was admitted today to hospital where she prepares for her surgery tomorrow. She has already seen two anesthesiologists , two nurses , one resident surgeon , a physio therapist, a breathing specialist, a nutritionist and an amazing guy who admitted us and was the coolest.

She has signed countless papers herself ( age of medical consent so parents sign nothing) to say she is aware of the risks of brain damage , being paralyzed and even death as a spinal neuro surgery ( these won’t happen but they have to warn and it is not fun to imagine it )

She has been taught how to sit up and roll like a log post surgery and how to breathe

Taught affirmations and stress reduction techniques

She has visited the school here and playroom and seen so many cases worse than here own and said “ mom there are so many people who have it worse than me “

She has felt compassion here

And been nutured

She has already grown up more - I see it

She had a surprise visit from our new friend Tina who is our new friend as her daughter went through this a year ago

Cassie and Liv are here with her now ans chatting in the solarium at the shriners where a room was made by parents who lost their son here and dedicated a room to him

Other of her friends are texting me and making my day and making me smile

We are surrounded by love at every turn. Text messages , phonecalls and emails are pouring in and have been for the last week .

Last night we had an amazing family dinner with sandrine and Didi there for the send off too

My heart was and is full and will be as long as it keeps getting filled with this fuel .

In situations like this you really really get to know your people and whom you can count on when things gets rough . You get to know what is important in life and hopefully keep that feeling inside of you forever

Tonight she gets flushed out for surgery ( won’t go into details but very unpleasant process ) and takes the sterile shower and antiseptics and prepares for her long nap and fight after that

And we wait .. and wait .. and wait

And we watch our daughter at her most powerful.. and most vulnerable... being adored

And we feel terrified

And angry

And sad

And unsure

But mostly we feel grateful for our blessings and abundance of love and support and knowing that whatever is “ taken away “ is given back to her in countless other ways

We go in strong knowing our girl has got this . We are a team practicing all our lives to take this kind of thing on . And we will . She will .

Title: To Repair With Gold - Waiting During Surgery
March 19

I remember when Emma was born I was in awe . How was this possible that I could feel such joy ? A healthy third baby AND a girl ? Is it even possible to know more joy ?

And I had dreamt up that girl all my life really I think and felt so complete with our beautiful family of five . My two beautiful sons and now my baby daughter.

This morning as I woke up ( well got up as clearly not much sleeping night before surgery in the hospital with Emma ) I climbed into that same girls hospital bed and cuddled her up as she peacefully slept

I took her in all of her before she had time to push me away as she woke up . All of her - in in into my heart

We went through all the things you go through before surgery the showers , the tests , the doctors coming in the room , the social workers , the surgeon speaking to her , the surgeon and anesthesiologist greeting her and then taking her away . And just like when she was born it seemed like a dream - all of it - surreal and not happening

What I have a baby girl ??? For real ?

What my baby girl is now all grown up now and going into spinal fusion surgery?

What do you mean my daughter has scoliosis ? My daughter is a dancer didn’t you know ?

What ? You are attaching wires to her brain and feet to be monitored by one team member the whole time ?

What ? What ? What is happening here ?

And you may think there is no joy as we sit here waiting but it is plentiful along with a terrorizing unimaginable fear . But joy is there

Joy we “get” to have this . In the last few weeks the amazing moments we have shared with our daughter through this agonizing process are filled to the brim with rawness and realness and beauty

The good the bad and the ugly of it all is all of our story . And only our story to live together .

I have watched my daughter and learnt more in the last week about her than I may ever know in a lifetime . In the last 24 hrs I have an open window to her soul . She is the most resilient calm cool and collected person you have ever ever met . Right up until performance time ( in this case surgery ) . Then she lets it out . She scrunches her pretty face up and cries softly like a little kitten . And reaches out . To us her parents . She becomes our baby again after many many years of brave faces.

I watch her with her surgeon and her careful smile . I watch her with her anesthesia senior who promised to make her laugh . I watch as he touches her hair and face as though she belongs to him in his heart . I watch her and he holds me in his arms too . I watch her notice the tenderness and kindness and humanness surrounding her

I feel her heart growing

She may have in a few hrs 2 big broomsticks and 28 screws attached to her spine .... but her heart has expanded . So have ours

I imagine her graduation one day .. her wedding maybe ... being in the hospital again with her one day as she has her own baby maybe . And I see them so clearly . I know she is coming back to us safely and I feel it more certain than anything I have ever felt

I get to have these moments . How lucky am I ?

We sit here in the waiting room and wait for our bffs to come for a short visit and go heat up our lunches - wondering how we will act and who we will be during our visit

My mom will come towards the end of surgery and wait with us . And the boys will be back tonight to see their sister .

Pain will come . Loads and loads of pain and morphine put directly into the spine for a honeymoon period of 24 hrs . Then many days and weeks of morphine and opiads where we have to monitor to make sure she does not become addicted

The first 72 hrs are crucial and critical I have been told . They monitor Emma each 30 mins days and night to make sure no paralysis since so much of spine being fused . The waiting won’t end when the surgery is over - far from it

And then weeks and months of recovery and a couple of years of limitations

But you know what ? I don’t care about any of it . I just want them to bring her back to us

Safely and soundly . Woven with their magic and filled to the brim with their amazing expertise and skill

I want her to feel unbroken . I want her to not have to live life as she has the last 5 yrs of waiting and waiting and wondering. I want those 20 hrs a day in brace for 3 yrs to count

I want my baby well

And not only do I want it and praying for it

I am demanding it on her behalf

And will sit here and not care about eating or peeing or breathing until she is safely back however long that takes

And just like that first day I held her in my Arms I will be in awe of her . Of her courage and fearless determination. Of her certainty to want this surgery for herself . Of her beauty and grace and all that she did and does and will always do

I want her back very very soon

Title: Nobody said this would be Easy - 20 hrs post surgery
March 20

(Forgive me I am not feeling especially articulate today but do want to give an update for the so many whom are following and asking as so kind you care ❤️)

There was great elation when surgery ended . We made a decision the three of us that was so hard and it was amazing to see it executed. Check that box

Daughter came out alive . Another beautiful box checked

Daughter came out no paralysis from surgery . Check !

Spine fused with 9 vertebrae and surgery went well check check check !

Lots of checked boxes and If we could celebrate with a few ( many ) drinks we would have .

Reality of course sets in as these next few days will be the hardest. Everyone warned us of this but hard to really understand until you are there

We are there now and from what being told this is going to get worse . Morphine is still in her spine so her pain is still ( somewhat ) manageable and will get higher as soon as the morphine in spine wears off and on morphine pump only

Its very hard to say the least . And hard for us . Imagine emma ??

She is so fearful to move and even move her eyes in a normal way that is is quite scary to watch . She is of course totally under the effects of the morphine and anesthesia and will be for a long and while .

She is angry and irritated especially at her parents ( us ! ) and nurses and doctors as they all pour into the room constantly and make her speak and move

Today is more of a helpless feeling day for us and we all know it will get better and better . But today and tomorrow I feel like we are at WAR is the only way to describe it

And full of fear as so hard to see them to tell her to bend leg and she doesn’t want to ( but finally does ) or hug her body with her arms and doesn’t want to and takes all the effort in the world and does it

They sat her up for a minute and had to lay down as her world is all dizzy for now . And very very small

I am ok with it being small as long as it gets big again ...

Its just hard to watch as a parent although its all to be expected of course . You just sit here and wait and wait and watch her in pain or sad and rely on the nurses to tell you if it is normal

Then you wait for the doc to come and do her tests of loss of movement and then the nutritionist to come and see her struggle with sips of boost

Alarms of machines go off all the time and catheters in and ivs on and needles and everything else that happens after surgery and with every medication possible it seems to counter the side effects of the others ones

Its nearly impossible for me to imagine that she could possible leave here in 5-7 days ... but I am told it is true

Remember for her she has lived her life as a been with a big curve spine . Now this straight one is foreign and feels awful to her . She has to learn to move it and sit with it and walk with it . She has to learn all movement again

My nerves are very much on edge but my heart is full

And each time today when I feel down and feel I may lose it .... I remember how lucky we all are and how blessed and how much worse this could have been

Hey my daughter has a straight spine guys and girls !! And surgery went well . Everything else is peanuts around here right ? ( lets see how long I can feel this positive !! )

Title: I Don’t have a blog in me today (day 2 post op )
March 21

It is very very rare that I don’t have words or that writing doesn’t help me process things or make me feel better

Today I just Don’t have a blog in me or a pretty picture to post . Nada

We had a really really hard last 18 hrs . And imagine if we think its hard how emma feels ?? This is the part that makes me feel sick to my stomach is how traumatic this must be for her

At 12pm today took four steps which is great news as a huge milestone in all this but I cant seem to allow myself to feel it all yet as I am too nervous and too cautious and too exhausted to allow any feeling of happiness yet ( but of course for emma I don’t show that )

She is doing what is expected and at her own pace but it is really hard to get her to do the leg and arm and excercises and breathing excercises that we need to do every hour

She is hooked up to all sorts of machines and Ivs and catheters and the night was quite something else . Feels for me feel so scary in the night

Thank goodness for these amazing nurses and their superb care

So she took a few steps and that is really good news . Anxiety and exhaustion for us has been high and terrible pain for emma and lots and lots of drugs that sometimes seem to help and sometimes do nothing

More another time when I have more words

Title: Progress (day 3 post op)
March 22

I have many stories to tell and so many thoughts going through my mind .... and sadly zero energy to share them

I think the word survival mode is very fitting

Emma is making some progress which is by far the most important and beautiful update . Today she walked a little 3 times with the nurses and sat in a chair !

And had catheter taken out and pee !

And switched from morphine pump to morphine orally and many other pills !

This is big stuff in our little hospital life

We are very proud of our girl ❤️

We have also started a few of her friends coming. Very popular girl she is and all want to visit and just have to be very careful that usually one a day etc and depends on what the day holds etc as she has so many specialists coming in and out and needs to take care of

But emma totally perks up with these younger visitors which is desperately needed right now as she is getting very tired of mom and dad hovering over every moment . We will be begging for visits when she gets home so pls keep asking too when she will be out of hospital and at her long recovery at home

I am learning so much about myself through this journey and what my strengths and weaknesses are ( lots more weaknesses discovered) and I am trying to give myself a break . I am grateful for the people who watch out for me and give me both the nurturing and the tough love I need right now to get through this

I am learning so much about emma too ... i have spent more time in the last week with her than ever of course

And I have a massive massive appreciation for my husband who is a star in my eyes. He is handling this so beautifully. Find me a better caretaker for this would be impossible . He is our rock right now

Its really so much harder than we ever all thought but tonight was so very nice to see some light at end of tunnel with a few of the milestones

Sleep helped last night too as i slept in the family hospital room vs emma room as was going on apprx 96 hrs with maybe a dozen hours of sleep total

Thanks to all .... you really get to know who your friends are through crisis and man we have a wonderful village .

I am hoping one day soon I wont have many updates .

Gratefully

Tarina

Title: Looking back before looking forward
March 25

As we approach the last phase of hospital stay where emma has just has a couple more milestones to meet before she is discharged ( will probably be tomorrow !! ) i want to look back on a few things that many people have asked me about and also that I don’t want to forget .

Emma was diagnosed at 12 yrs old with scoliosis which is a curvature of spine . Many people have slight curves and are fine . Hers was not slight at all and began at 31 degrees in her thoracic spine ( upper spine )

We never knew and was found out from an annual doctor visit

That year when found out 2014 our family was already going through two major other upheavals and this diagnosis of bracing for three years just seemed like the last straw at the time and the end of the world. But we pulled through on all accounts and I can truly say are stronger and more united as a family since 2014 even

Emma wore a brace for 20 hrs a day for 2.5 yrs and 15 hrs a day for another .5 yrs so 3 yrs total . Because she is a dancer we opted for spincore athletic brace in day and rigid providence brace at night

It was a tough three years of bracing but she did great . Was hard for me as her mom to have the extra struggles of having to make her wear this everyday and i think she really resented me for it . I decided that could not matter and this would avoid surgery for her one day but was difficult to have to play this demanding role daily for all those years . Bracing is uncomfortable and difficult and bruises and limiting and just makes life harder

Here is a video Novartis made of emma when she was 12 yrs old called " We have your back Emma "

(only works on PC computers for now - we're working on a fix)

https://tarinaw.com/videos/WehaveyourBackEmma_Web_1.mp4

When her brace came off three years later we celebrated so much as only went in those 3 yrs from 31-42 degrees with a compensatory lumbar curve ( bottom ) of 20 . She succeeded and was out of danger now for surgery as curves below 45 usually don’t progress much in a lifetime

Such relief and celebrations as in scoliosis every 6 months is massively stressful with hospital visits and finding out what number curve is at . Emma has had more xrays that most people will ever have in their entire life and will continue this way forever

Another year goes by and there we are jan 2017 for her routine check at shriners and they do xray . For very first time not even nervous as knew she was not a surgical candidate anymore !

Well when we saw all the medical students come in with surgeon we knew what was coming :(

She was now 52 degrees thoracic and 25 lumbar and surgery was on the table for sure as science says she would progress a degree a year . A very not typical case after puberty

We were all devastated

A big choice to make as she would have the surgery in her lifetime likely before 27 yrs old but when was the best time ?

Huge decision also for a competitive solo dancer and hip hop team competitor where movement is her life

She chose this and we supported it by us doing tons and tons of research for the last year but it was not an easy choice at all . It was heartbreaking.

We chose surgery bc :

She is still pediatric and able to be at best of best shriners hospital

She has the best surgeon on history of planet and we could not be assured he would still be here in 2 yrs

Her left lung was suffering slightly being pushed to the side

She had zero pain and we didn't want her to get pain before surgery as surgery doesn’t necessarily fix existing back pain

She has way less risks in surgery when young ( serious complications in this surgery possible so the less chance the better )

Recovery pediatric at best shape in life would be 8 weeks home and limitations of some things 2 yrs where as an adult recovery would take one year at home in many more obstacles

So truly hardest decision of hers and our lives and until this very moment ( one day before going home from hospital ) I had no clue if we had made the right decision or not

Here is a video made by her dance studio H4L that did a surprise tribute to her after her solo in front of hundreds of people ... still cry when watch is as so beautiful (it might take a little while to load - only works on PC computers for now - we're working on a fix)

[embed]https://tarinaw.com/videos/EMMAGOSSETVIDEO-sm.mp4[/embed]

I would seriously not wish this stress on anyone but it is part of us and our story and will always make it a beautiful as we can

Tomorrow emma should be released from hospital yay !! 6 weeks convalescence at home shall begin . Will be hard but nothing of on the realms of the last 9 days on hospital

❤️🙏❤️🙏❤️🙏❤️

Title: Kintsukuroi
March 26

There is a beautiful saying that goes, “The true life of the bowl began the moment it was dropped.” It refers to Kintsukuroi, a Japanese art form in which the cracks of broken ceramics are repaired with a mix of gold and resin. In doing so, these fractures are transformed from flaw to feature, the piece from a sense of brokenness to a piece of resilience and the beauty in imperfection. By being dropped and broken open, the bowl’s vulnerabilities are revealed and through its repair with gold, a new sense of uniqueness and vitality is born.

I will always hold the image of Emma on that that operating table being repaired with gold by her strong and powerful surgeon. And the image of her anesthesiologist holding and caressing her face tenderly while taking away her pain and fear. They cherished her and took care of her as if she was their own. They made the most unimaginable moments magical somehow

We are home as of this afternoon !!! And about to create something absolutely beautiful together ❤️

Of this ... I will make sure .

( ps thanks so much for following! This is my last blog post of emma updates and back to normal business now as she continues her recovery and convalescence at home the next 6 weeks)

You can see a video of Emma’s journey at the Shriners at

@tarinawofficial on fb or instagram

Emma Spinal Fusion Pre/During/Post

all detailed blogs on TarinaW blog seperate part
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