Back Into Routine

Looking at Jessica today, you wouldn't be able to tell that she just had back surgery six days ago today!! This little girl of mine has so much strength and determination.

Jess went back to school today and had a great day.  I was a little worried how she made out because she has had a nap everyday during the afternoon.  She came home very happy, but by dinner time was certainly cranky and ready for bed.  Everyone is soooo amazed on how well her recovery is coming along! She is just on Tylenol every 4-6 hours or when needed.  She gives us some good ques now by rubbing her back when she needs tylenol.

Heading in the Right Direction

 

 

Jess had an amazing night.  The nurse only had to give her one shot of pain medication through the night.  She slept like a champ even with all the night screaming from the ward.  About 3 am I could of used a shot of Nubain to knock me out! 

Early morning Dora

Ortho came in this morning and said that they needed to get an x-ray before we left and then probably could leave after that.  A front and side view were taken and  I got to take a look at them and saw where they added a clip in her back.  If you look at jess straight on now, her shoulders are level and she looks fantastic!   Prior to going into surgery, her left shoulder was starting to drop and she seemed to be loosing her balance when sitting on the floor. 

Approximately 1 inch in length

Today's hospital stay was longer than expected.  Jessica had all her IV tubes removed and a bandage change.  The incision this time is very small compared to her last one! 

Finally, around 4pm we left Montreal Childrens Hospital.  We were hoping to get out a little sooner so that we wouldn't get stuck in traffic...no such luck!

Tonight we are in Ottawa and then back home the next day! 

 

 

Little Bump In The Road

Miss Jess had a ruff night last night. She was vomiting and wasn't keeping any of her food down.

By morning Jessica was very grumpy.  A whole lot of tired mixed in with a bit of down right feeling like crap!!  Even Dora could shake those tears!

Jess saw her container of puffs and smiled, so I gave her some of those with success. I then tried her with a cereal bar, which she ate half of.  Soon after eating something, the pain management team came in to switch her anti nausea drug.   They were even talking about switching her narcotic because  apparently the pharmacy is running short of Nubain. They were going to try her on a synthetic sister of morphine (which I was a little nervous to try because of past constipation issues).  About an hour later they came back to her room and thought it would be best to keep her on the Nubian. Right now she isn't using much of it anyways. The last time Nubain was used was this morning because they had to draw some blood from her...o.k....a lot of blood!  It took about 15 minutes to locate a good vein and three pokes later, we got 5 vials of blood.  They are still testing her antibodies in her blood and sent it off to a lab in Montreal.  Not really sure what's going on there??

First time sitting in her stroller

 

The good thing about today is that she has had a good pee in her diaper along with some bowel movements. Now we just have to get her off the narcotic and then maybe we can GO HOME!!!

SMILE :)

Crossed My Fingers Too Soon

Jess was doing amazing right after surgery in recovery.  She was alert and wanted to sit up so they moved her to the regular ward.



Jess resting after surgery

Everything looked great until about 4:30pm today...right about when I left to take a shower at the hotel.  Dad did amazing on puke patrol!  She started to vomit after we introduced her food and has continued until 8:30pm. She was given an anti nausea to help settle her stomach along with some pain medication. She is now stepping peacefully. We won't try anymore food until the morning.

Not feeling so good

What does this mean now...

 

We can't leave until she gets a full feed into her (Hasn't done), pee and void in diaper (hasn't done) and off pain medication (not there yet). 

 

 

Surgery Day

 

This morning was an early start. We were up at 5:15am giving Jess her bath before surgery. She was very happy and loud in the hotel hallway...oops !

We walked to the hospital and went to Admissions for 6:45am. Jess did very well this time...and mom surprisingly kept it together!

We got to talk to Jessica's doctor prior to her going into surgery. Dr Ouellette was able to look at her X-ray in hopes that it will be a quick adjustment on the one side. Hopefully a short time in the O.R.

Waiting to talk to the doctor prior to surgery.

Surgery went VERY well.  One small incision and a slight adjustment on the left side (1.5 cm).  Dr. Ouelette ended up putting a clip in her back to prevent the rods from moving back down.  He appeared to be very happy with the outcome of the surgery. 

Jess in Recovery...a little dozy ;)








 

Looks like it's going to be a short stay in the hospital and home sooner than later...fingers crossed!

 SEE EVERYONE SOON!

 

Montreal Bound...AGAIN!!

We had a great weekend catching up with friends and family.  Jessica had an amazing weekend catching up on sleep. She had a nap for over an hour everyday except Saturday!  Not very often do you see her rest like that.  Miss noisy Parker doesn't want to miss a thing!

So we are Montreal bound as we speak. Fingers crossed that traffic isn't that bad when we get closer to the city.  I've never seen construction and traffic worst than Montreal!

We have an early morning ahead of us.  Jess is first up for surgery, so we have to be at the hospital for 6:45am.

I'll try my best to keep posting throughout the day with updates.

Busy Day

 

 

Yesterday morning appointments started with some blood work. Three pokes and a whole lot of tears later....we got blood!  So sad to see her go through that, but the exciting thing we saw was her knowledge of the needle.  First time I've heard her scream as she was watching the needle come to her arm.

We headed downstairs for an EKG and several X-rays to get a better picture of what's going on with her back.

Jess having her EKG

  

After lunch the nurse came back and told us that the lab needed more blood!!  During her last operation, she had a blood transfusion which has now devoloped antibodies in her system. The lab now has to make sure that if she requires blood, that they are compatible.

 

Jess watching TV waiting for the Dr. appointment

 

 

Last thing on the list was the doctor's appointment.  We only talked to the interns and signed a bunch of forms.  they talked about the procedure that Jessica was going to have done.  Loved the "KEY" words they were saying like slight adjustment, not as invasive!  We won't get to see Dr. Ouellette until Tuesday morning prior to Jess going into surgery. 

 

Today is RELAX day!!! Hopefully a little nap for miss J so that she can catch up on some well needed sleep.

 

The weekend will be catch up with some friends and family.

Enroute to Montreal

We left home a little later than expected and didn't roll into Ottawa until midnight last night.  Jessica thought it was PARTY time when we got to her cousin's last night.  Thankfully she didnt wake anyone up.

Early start on the road with no traffic...yet.

Interested to see what tests they run a Jess today. Hopefully, it will be a quick day so we can head back to Ottawa and spend some time with family.

DATE SET

We have a surgery date...September 11th.  Something I don't want Jessica to go through again, but necessary. Jess has been up quite a bit through the nights and appears in some pain (rubs her back).  We are told she needs an adjustment and fingers crossed that the surgery won't be as invasive. Hopefully just a small incision and a couple days recovery in hospital.

We just finished our appointment with Shriner's and I wish I had better news to blog about. Looks like Miss "J" will be I visiting Montreal's Children's Hospital O.R once again. The good news is that the surgery will not be as invasive. Basically what is happening is that due to the continual twisting and curving of her spine, the growing rods are unable to slide as designed. The surgeon needs to make a small incision and manually move the rods to allow for growth. This surgery will be happening probably around September and Jessica's recovery should be a couple of days in the hospital.

Upcoming Appointment

We will be heading to Montreal for a follow up appointment regarding Jessicas's back. We sent x-rays of her back about three months ago and will find out how the rods are holding up. It looks like her back has twisted a bit since the surgery from comparing pictures.

Jessica has remained in her back brace since we left the hospital. She doesn't seem to mind it and gets around just fine with it on. I'm hoping the surgeon says she doesn't have to wear it anymore. It basically was supppse to stabilize things in place and allow the screws to set to the bone. It will be one hot summer for her if she has to wear it!

Out With The Old, In With The New

OLD HARDWARE

 This picture was taken just before Jessica's second surgery.  Her rods were failing and if you take a look at the x-ray below you can see where the rod was starting to poke out her back.

NEW HARDWARE



Jessica's back is healing beautifully!  By comparing the top picture to this picture, you can see how straight her back is once again.  Fingers crossed it stays like this and doesn't rotate as bad as last time. It's surprising that she doesn't seem bothered by her surgery at all.  She hasn't once rubbed her back or winced when we pick her up.  It makes me believe that she was in much more pain going into surgery than now.  Her pain tolerance is so high!

   NewRods                               Old Rods

The difference in the new rods is that the rods now fit inside one another and are designed to glide along with a locking mechinisim to stop the rotation.  You can also see mid-way, more screws were added to hopefully stop the spine from moving to the side.

                                                                                         

First Day Back to School

Well, I certainly didn't think Jessica would be going back to school so soon!

We tried a half day on Monday to see how Miss Jess would do and of course she was nothing but smiles to be back.  So now it's back to FULL TIME!

Over the weekend Jess and I did some baking.  We had so much fun.

There's my little cookie monster's hand!!!  

I think someone is developing a sweet tooth ;)

Home Sweet Home

The four hour ride home went without a hitch!  Jess did amazing in the car and even had a little nap.  It's been an exausting week and I can't wait to get back to routine.  

THE EMOTIONAL ROLLCOASTER RIDE

Dr. Ouellet called today and gave some bad news. He examined Jessica's xray's taken the day we left. Her back has already started to twist back. He was disappointed as he had her completely straightened out on the operating table and he thought everything would stay that way. He said there is nothing we can do different as it is the disease that is causing this. He hopes we can get a couple years for growth but ultimately he is going to have to do a spinal fusion to lock everything in place.

Coming Home!

Jessica was realeased from the Hospital on Sunday!  Since we got her bowels on track, her recovery is amazing!  Jessica was getting bored sitting and laying down.  It was everything I could do to keep her entertained.  I even had to sit behind her in her bed to make sure she didn't move around too much until we got her brace.  Jessica is pushing herself into the sitting position with no problems.  Watching her do that is unbelievable.  You would never think that she just had spinal surgery! 

As soon as they got her central line out of her neck and a final x-ray of her back, we were off to Steve's family place to break up the long trip home because we didn't want to keep her in her car seat for a long period of time.  We are only giving Jessica Tylenol for pain and she did great on the car ride to Ottawa.

We are heading home today! YEAH!!! 

Up and Down

Every day Jessica’s recovery is that much better!  Yesterday, Jessica sat up for the first time since her surgery.  I even was able to finally brush her hair and pretty her up J

We had a visit from Physio to get her sitting in her chair. Since yesterday, Jessica has constantly wanted to sit up by herself.I think she’s sick of laying in her bed and wants to get going!

 Steve and I took her for a little walk down the hall. It’s been hard moving her around because she still has her IV hooked up in the central vain in her neck. I have also been sleeping with her at night in her small bed because she has been flipping and flopping at night and we are so afraid she will pull the IV out. 

Last night Jessica’s stomach started to distend again.  The nurse gave her an enima which did relieve some of her discomfort.  Around 3am, Jessica woke up uncomfortable and it took quite sometime to settle her down.  They ended up giving her some Nubain to settle her.  Within the hour she was back to sleep.

This morning they stopped her IV diet and put her on a higher volume of continuous food.  We also placed her in the stroller for a longer period of time.  She really seems to enjoy sitting up over laying down in her bed.

We had a visit from Ian who had her brace pretty mush finished.  He placed her in it and made some small adjustments.  This will keep all the hardware in place during Jessica's healing process.  We also find it so much more easier to pick her up with it on.

CODE BROWN!

That's right....we had a code BROWN last night!  Things are MOVING!  Jessica had a good night last night.  After two diaper changes, they decided to take her catheter out.  She has until 4pm to go pee on her own.  If she doesn't...that means catheter goes back in. 

The doctors have now decided to introduce her Nutrin Junior feeds again, however, at a very small dose.  They will be doing a combination of her "special" IV diet and a low volume on her g-tube food.  Eventually, we hope to slowly increase the g-tube food and eliminate the IV food all together...fingers crossed!

We also haven't given her as much Nubain for her pain today.  She seems more alert and is watching her movies.

Today we are hoping to get her into her chair and maybe take her for a walk down the hall.  This will be the first time she gets out of bed...yeah!

As I was typing this blog, steve sent me a text to check my mail...and SURPRISE!

Now, that's my girl!

"Hugs & Kisses"

What a fitting name for the quilt that was given to Jessica while she was in ICU.  Hugs and Kisses is what she has been surrounded by these past couple days.  Our nurse “Fred” was amazing and felt really bad in how much pain she was in.  He said he found it frustrating because working in ICU, he can go home knowing he has taken the pain away from the children patients.  In Jessica's case, he was unable due to the type of pain and the ordered Morphine was making it worse.

Last night a resident from Orthopaedics came to visit Jessica to take a look at her incision and have her dressing changed.  Her incision is exactly where the last one was, however, it looked at little different than last time...more blood on the bandage. 

Steve had a good grip on Jessica because it’s true what everyone is saying...SHE’S A FIGHTER!!!  The Doctor said the incision looked great and had no concerns.

Montreal sick Kids Hospital is a teaching hospital.  You usually get seen by the residents before the actual doctor comes to see you.  We had an amazing Doctor that was working in ICU while we were there.  When Fred stated he was concerned about Jessica’s distension in her stomach he came to see Jessica...not the resident.  He did a rectal exam and stated that her plug or obstruction was much higher because there was nothing in her rectum.  Suction was put on her g-tube to take excess fluids and gases that were building up.  Within seconds, over 50 cc’s of fluid came out which relieved her cramps a bit.  Jessica did have a restless night.

In the morning the doctors came by along with the pain management team and suggested to put her on Nubain.  Nubain is similar to Morphine but doesn’t cause constipation issues like Morphine.  They also suspended her Nutrin Junior feeds and have ordered her on a “special” intravenous diet that had all her fats, protein and carbs...that should come tonight as it takes time for the pharmacy to brew it up.  We have doubled her dose of laxative to get things moving.  We are willing to try anything after last night.   

Around lunch time they moved Jessica down to the regular ward.  Before moving her they gave her a dose of Nubain and both Steve and I couldn’t believe how much it knocked her out and relieved her cramps.  Yeah!!

Not even a smile L

There is definitely a big difference moving from ICU to the regular ward.  Jessica had the one on one care in ICU and the nurses on the ward are run off their feet.  There were a couple of times Steve had to call for a nurse for pump & med issues...HE’S ON IT!!!

We had a visit from Ian around 7pm to make a brace for Jessica.  This brace will help prevent sudden movements which may loosen some of the hardware that was placed in her spine.  Ian came at the perfect time because Jessica was starting to feel uncomfortable again and we were able to give her some Nubain.

I don’t think it would have gone so good without that medication.  It pretty much knocked her out and we were able to roll her over.

Jessica isn’t as rested and is more irritable than last time. There have been times when Steve and I are constantly by her bed trying to sooth her or rub her stomach. Hopefully the Nubain helps and her bowels will start moving!!!

Thank you NUBAIN...sleeping peacefully!

Crappy Day...Literally!

Good News:  Jessica started her feed at a slow rate and tolerated it without any difficulties at all.

Bad News:  She has an obstructed bowel.  This is stopping the stool from moving down as it should.  This put her in a very uncomfortable, painful state.  She was given two enema's, a glycerin suppository and even had the Doctor try and move things with an exam...nothing has worked.  Thus, all the food and IV fluids have simply continued to build up and cause increased pressure and pain for her.

It is so frustrating when Jessica goes through a major and invasive back surgery and the majority of her pain is caused by her constipation.  Another concern is that she won't lie still and is flip flopping around causing an obvious concern for her back.  We remain in the ICU to deal with it.

We hope the stool medication will start loosening things up stop her pain....

Day 2 Post Operation

Jessica's pain for her back seems controlled, however, last night around 10pm she started to show some signs of discomfort. Her belly seemed a little hard and was crying a lot which is unlike her.   Jessica was given something to help her go to the bathroom and she seemed to settle for the night after about an hour.   

Around 6am she was back to crying and it was everything we could do to sooth her.  An x-ray of her stomach was taken to make sure there was no bowel obstruction.  We were told that her bowels seems a little full at the top and not working it's way down.  Jessica already has issues with her bowels and the side effect of the Morphine is constipation, which isn't helping her situation.   Also her PH in her stomach was off which could cause an upset stomach.  A fleet enima was given to her to help move things along.  We are also hoping to start liquids through her G-tube today.  We didn't have much luck yesterday with the antibiotics which made her vomit.  Today, they are hoping to start with some water to see how her stomach reacts and then slowly introduce her food and PEG via g-tube.   

Steve will blog more tonight when he gets back from the hospital.