Home and the perfect gift :)

Nothing beats that feeling of crawling into your own bed :)  It feels so good to be home!

Jessica is loved by so many! It's times like this we see how much love and support she has and we are truly blessed to have everyone in our lives.

Dr. Ouellet's work of art!

Old hardware

New hardware

With the new hardware you can see there is now metal attached to her hips.  This is going to help keep things straight.  Dr Ouellet said she can do pretty much everything like before except she will be tender going past 90 degrees in the hip bend.  

Sooooo....this should be it.  No more back surgeries! Jessica will be followed for the next two years to make sure everything is going good.  Shriners will be doing the follow up, however, we received some sad news that Dr Ouellet will no longer be in Montreal.  He will be moving to the States in the next couple of months.  

I'm a big believer that people pass through your lives for a reason.  I feel Dr Ouellet came through our lives to assist us in a time a difficulty that no other Dr was willing to do.  He provided medical guidance and support that jessica needed.  This was the biggest gift he could give us as parents.  Jessica will have that gift forever.  Now his job is done...and he passes through :)

He has told us that there has been some patients that he has grown with...Jessica being one of them.  He assured us that he will still follow jess.  He gave us his personal email and cell number and told us to call if there were any problems.  He would come back and operate on her if need be. This is why this man has left a mark with us.  Jessica was more than a patient to him and you could see that when he spoke of her.  He would smile and touch the side of her face like a parent would do.   That is special which we have only seen one other doctor do...her anestethologist.  Two doctors in the same Operating room for a reason.... :)

Discharged

Hard to believe that 5 days ago jess had a spinal fusion done and today she's being discharged!   The doctors and therapists are always surprised how fast she recovery from such an invasive operation.  She's one tough cookie!

T-shirt fit the day :)

Jess was discharged around 7pm tonight.  The last two days have been really good.  The xrays came back ok.  The surgeon is happy with how straight her back is.  Ashe said... "It's as good as it gets."  The doctors are happy with the wound and pain management can be done at home.  Her belly does have some gas in it but nothi g to worry about.  

We are headed to Ottawa for the night to break up the drive home.  Should be back to regular routine by sunday :)

Light Switch

I don't know how jessica does it.  It's only day four post-op and the physio therapists and DR'S can't believe how good shes doing.  It's almost like she's flipped a switch.  You see her completely out of it and in pain to smiling and almost back to her normal self.

She's been sitting really well in her chair today.  She had her back xray and stomach xray not too long ago.   Now we are just waiting to talk to ortho :)

Day 4 Post Op

Jess had a pretty good night.  She still needed some nubain around 3am to settle her.  Ortho came in at 6am and said they want to do another dressing change.  She has some discharge showing on her bandage and they want to make sure it's not oozing and the site looks good.  Also they may order an ultrasound on her belly because she is really distended.   She has been going pee and poo but still want to make sure everything is good in that area.

We are still waiting for an xray on her back so ortho can evaluate if it's OK for discharge this weekend :)

A Breath of Fresh Air

There is one thing that jess absolutely loves...being outside!

If she's grumpy at home, it's amazing how her mood changes when you take her outside.  Well, look who got some sun on her face :)

Steve and jess enjoying the sun :)

We made some huge strides today.  We re-positioned her a lot in bed,  She got her Foley out, and she sat in her wheelchair for a half hour twice!

We still have a bit to work on before they discharge her.  She needs to get off the nubain which is given by IV (she had three shots of that stuff today), needs to be able to handle sitting for longer periods, and she still need an xray of her back.

My little superhero girl has superhero strength!  This morning she ripped out one of her IVs and she just pulled her last one out...ugh!  So now the nurses have rigged a face cloth over her site so she doesn't pull it out :)

Plan for the day

Jess had an amazing night so today we are going to try and sit her up and get her moving

I have tried to upload a video of her trying to laugh (but you can tell laughing hurts her).  It's soon nice to see :)

Plan for the day:

1.  Sit her up more
2.  Get her Foley out (Ortho has to approve it and they won't be here until 12...so really 2 ish)
3. Transfer her into her wheelchair.

It would be so nice to see her in her wheelchair.  It would allow us to take her out of her room.  She must be getting bored of the 4 walls and our faces :)

We had her laughing while she was playing with the balloon  :)

Great Night

Jessica had a GREAT night!  We kept her pretty medicated so she could get a good sleep.  I rotated jess every hour and banged on her chest for about 5 min every time we rolled her.  Jess sounds way better and I can't hear the rattle in her chest anymore.

Jessica has been receiving her full feed and water intake since last night.
Jessica's bowels are also working REALLY well...in the sense we have had to change her diaper... A Lot!.  Jess hasn't vomited once either, but her stomach does seem a bit distended since her last full feed.

Hopefully if jess is a little more alert, we can clean her up.  Her hair looks a bit like a birds nest :(

Ouch!!!

Jessicas transfusion went well.  Her hemoglobin is now 107 which is a good number to be at now :)

Ortho came in to see how her incision was doing

That's gotta hurt!

Thanks for the stuffy Aunt Nadia, Uncle Jeff, Alex and Brett :)

Jessica has now developed a rasp in her breathing and she sounds a bit labored.  We are now doing clapping on her chest to help eliminate the excretions and reposition her more often.  Poor girl is not happy with us.

A Little Push

Blood transfusion will take approx 2 hours.

Thank you blood donors!!!

The hospital was prepared for jessica to loose a lot of blood and ordered 5 bags from their blood bank.  She used close to two liters of blood during surgery and is currently receiving 347 ml of blood.  They were monitoring her for the first 15 minutes to make sure she dosent have a reaction.  

Rollercoaster Ride

There are a lot of ups and downs these past days.  Right now we could actually see Jessica going down.  She had a rough night and her morning has definitely not been pain free.

The pain management team just left and jess will now be put on Nubain .  We thought there was a shortage but it was a nurse that said they have some.   Jess did amazing on this stuff last time.  Fingers crossed it works just as well. They have prescribed nubain for every 2 hours or as needed and they have moved her Tylenol every 4 hours so it over laps with the ketorolac.

The not so good news just came In.  Her hemoglobin has dropped more overnight.  Yesterday she was sitting get at 80 and now her levels have dropped to 70. This now means she requires a transfusion.  They are just hooking her up as i type. Hopefully this helps top her up and then her body can produce it better afterwards.

Code Brown!!!

Good news....Jess had her first bowel movement!  Things have been going really well with the no vomiting and now with her bowels.  In the past this has always been a struggle.  She is still on straight liquids/electrolyte through g-tube and will be working up to half and half on the neXT feed

Her blood work was taken this morning to test her hemoglobin levels.  We are still working on the pain management and the first dressing change is scheduled for 10ish.

Plan B

Jess had a so so night and didn't sleep much.  Knowing how high her pain tolereance is its tuff seeing her upset.  We need a plan B.

We are hoping to talk to the pain management team this morning around 9ish to see if there is another drug we can give her in between the Ketorolac.  She needs just a little something more because she gets uncomfortable 1-1/2 hours before they can give her another dose.

 Jessica is also running a bit of a temp (38.2).  They are giving her Tylenol and monitoring it.   Ortho usually drops by in the morning to have a look at her.  We will see what they say.

1st Night On the Ward

It's nice that jessica is out now ICU because we know she is officially out of the woods :)  Hard part now is that she doesn't have the "one on one" care that was given in ICU.  The ward nurses are extremely busy and short staffed (can't blame them) and when we got to the ward, her pain medication wasn't given on time.

I feel steve and I walk a razor edge on so many decisions when it comes to decisions on surgeries and medication.  Do we or don't we give her a shot of morphine....knowing how it effects her.  There are difficult decisions that we make and realize there are no easy answers.  Once a decision is made we don't dwell on wishing we'd done things differently, because It could parlyze our future decisions.   The decison was to give her morphine.  It settled her pain, but gave her the twitches again.  I've pretty much had to stay by her bed so she wouldn't pull at her tubes or flip out of bed.  I'm counting down until midnight (2 hours, 21 minutes, 48 seconds) before she can get another shot of ketorolac.  She seems so much better on that stuff.

5 Star Rating

Jessica is now out of ICU and on the regular ward....Woohoo!!!  She hasnt had the weird muscle twitching since they switched over her pain meds.  They are still watching her blood pressure which is a bit low and her hemoglobin which is mildly low.  All this is quite normal after so much blood loss.

Now about the hospital rooms...WOW!!!

Has a recliner and pullout couch!

Small desk

Flat screen tv with cable :)

Our own bathrooms with a shower!!

Now all we need is room service to deliver the food :)....oh wait,  thats Steve...lol!

We already put our review on trip adviser...lol!  This hospital is absolutely AMAZING!!!  Steve and I are completely blown out of the water how nice it is.   They designed it for the patients and the family staying.  I really wish we were here for the last 5 surgeries!

My Brown Eye Girl

Yeah!!!!

Eyes are open....and looking around :)

Still pretty puffy.

We brushed her teeth with a sponge and Steve was able to clean the blood out of her nose left from the tube.  

She looks so much better since they changed her to ketorolac :)

Holding Pattern

Looks like we will be staying in ICU for a bit.  During the Doctors rounds jessica starting doing a funny twitching motion with her face and shoulder.  Her eyes would widen when this happened which looked a bit painful for her.  They didn't think it was a seizure because her vitals during that time stayed the same.  They do want to keep her a bit longer for observation just in case this is related to pain management.  They have changed her pain medication to ketorolac.  She did really well on this last time.

Now we watch her face to tell us how's she's feeling.  I think (and I say think because I'm constantly watching her body signals) Jessica has daily pains and I truly feel she doesn't know what "pain free" is.   I suppose only those who have gone through such a surgery would really understand the various pains scoliosis can bring to the human body.  My muscle pains or other people's growing pains probably don't even touch the levels of aches, throbs, or soreness that jessica deals with daily.

As I'm typing, they have just started  to run some clear fluids through her g-tube.  Day 2 has the reputation for being the worst.  The heavy drugs that they put directly into her spine is wearing off and the narcotics we are giving her can cause nausea.  Hopefully the anti-emetics work!!  They are giving her ondasatron.  This is something that they give cancer patients.  It's very well known to help with nausea.  So far so good with jess :)

Good Night

Jess had a good night.  They gave her pain medication every hour on the hour to make sure she had a restful night.  Her oxygen and blood pressure has come up.  Blood work was taken last night which showed her platelets are low.  This is ok after such an intense surgery.  We will wait to see if they come up on their own.  She also vomited twice last night, but not much came out because she has nothing in her stomach.

Sleeping peacefully

Looks like they will be sending us down to the regular ward today :) pretty excited to see it.  The nurses were telling us how nice it is :) This hospital is so amazing!

Better By The Minute

Jessica had adjustable rods that had to be lengthened approxinayely every 6-12 months to keep up with her growth.  Today those were removed and a full spinal fusion was carried out.  This was a major operation where the spine is straightened using screws, rods and bone grafts from t3 to her pelvis which will be left in permanently.  

Longest moments in my life....waiting to get the go ahead to see jessica after surgery.   Waiting I think is the hardest part.  I keep thinking....Jessica is the strongest girl I know.  Amazing that a 10 year old (soon to be 11 Sept 29th!) claims that title in my life.  She has endured being poked with needles so many times in her tiny arms, has had multiple surgeries,  numerous CT scans/ MRI and has spent numberous days in the hospital in such a short time span.  Through it all, she has handled it with more strength and courage that I ever could!

Pulls on the heart strings seeing her like this :( 

An hour and a half after talking to the surgeon we got to see her.   She looked good considering what she's been through!   She had a breathing tube left in due to some fluid around her lungs.  After a couple of hours, they took the tubes out and she was breathing on her own.  Her o2 levels and blood pressure were a bit low so they still gave her some oxygen and will monitor her blood pressure.

Breathing on her own :)

Now we watch her eye and face movemnts for pain :(  Fingers crossed for a good night :)

Out Of Surgery

Its 3:45 and Dr Ouelette just came out to talk to us... he is happy with the way the surgery went.  It was about a 6 hour surgery and around 2pm, her blood pressure started dropping and she lost over 1.5 litres of blood which is reportedly a lot for her size.  She is stable now and they are just prepping her for ICU.  She will remain on intubation because she has fluid on her lungs.  The next little bit will be rough on her and she's not completely out of the woods yet.

ICU Bed Issues....AGAIN!

Sorry for the late post....but I forgot my phone at the hotel during the busy morning routine. 

 Jess had a very restless night which made for a very early morning. We arrived at the hospital shortly after 7am. 

The new hospital

Steve once again began the running around to get the important paperwork filled out.

Waiting patiently

We didn't get to see Dr Ouellette until around 9:00am and once again, he was still in his street clothes. This was not a good sign :(. We heard the dr's talking in the hall and it sounded like another unexpected trama came in. Dr Ouellette was making a good case for us because we already had to postpone surgery once. 

SURGERY IS A GO!!!!!

 We were told it will be a long surgery and the dr will come out and talk to us after its done. He told us we would probably see Jess around 4ish. 

Jessica's back before surgery

 Jess holding mom and dad's hands

 Now we wait :(

Take Two

Let's try this one more time :)

We are back in Montreal and Jess is tucked snug in bed.  We have an early morning tomorrow.  I will keep everyone posted.

Today Is Not The Day

Surgery was booked for 8am today.  I knew it wasn't going to be good news when I saw the surgeon still in his street clothes at 830.   Due to a unexpected trauma that came in, Jessica's surgery was postponed.  They had a meeting and discussed that Jessica would need to be intubated and would also  require some blood transfusions which will be hard on her lungs.  Everyone agreed that the intensity of the surgery was too risky not to have the ICU bed available.  So now the surgery is booked for Monday morning....if no traumas come it!

Montreal Bound

Rain, rain, and more rain!

The weather hasn't been the best this weekend.  Non stop rain to the point where we are all thinking we should start building an ark!

What to do when it's raining....go shopping! :). 

Tonight we are Montreal bound.  We've been well fed (thank you Penny and Tiff) and well rested.  Now we have to get Jessica ready for her big day tomorrow.  Tonight we will bath her in a solution to prep her for surgery.  We will also have to do that in the morning before heading to the hospital.  This is to ensure she is well disinfected so no "bugs" will cause an infection.  We are told that they have booked the Operating Room for the whole day due to the complexity of the surgery and also to be prepare how intense this will be on Jessica.  Soooooo....Here we go!!!

Chilling By The Pool :)

Looks like we are only going to have one day of sun while we are visiting.  Soooooo...we made the best of it :)  

Love this picture!

The boys and Jessica were the only brave enough to go in the pool yesterday.  I was told the pool was sitting at 80...but my big toe disagreed!!!

Jess enjoying her morning movies in the trailer whil she feeds.

The leaves are FALLING!!!!....ugh!

Missing my Everything...

...Steve and Jess :)

I'm pretty lucky to have a person in my life to take situations head on!  Right now Steve is in Montreal for the pre-op before Jessica's spinal fusion.  With all jessicas surgeries and appointments, Its difficult to stretch my vacation and sick time.  The weekend can't come fast enough!  I'll be meeting up with them Friday after work in Ottawa to spend some quality time with the salmon family before heading back to Montreal Monday night.

Tuesday morning will be busy!  We have done this so many times, but now we will be in the new hospital.  This means...WE HAVE NO IDEA WHERE TO GO!!!...ugh.

We knew the routine at the old hospital like the back of our hand.   I'm nervous but excited at the same time.  New hospital might mean Jess gets her own room !  I've always found that part hard...sharing a room with one to three other families.  This will help in jessicas recovery :)