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. 

Recovery going well...

Well, Jessica had a bed in the ward, then it was taken away, given again, and......she is still in the ICU!  No worries, Jessica is doing great.  Her blood pressure has come back to well within the normal limits and she has rested well all day. 

Dr. Ouellet visited and he is happy with her progress.  He would like to slowly start her food intake tomorrow morning.  Jessica's medication for her reoccurring UTI's was given via G-Tube but she vomited immediately so hopefully tomorrow her stomach will be more settled.  This is a common side effect to the Morphine.

We didn't take any pictures today as she spent the majority of the day sleeping...this rest is great for her recovery!

Until tomorrow....

Day 2 - Still in ICU

The surgical Resident came in this morning to examine Jessica.  He was hopeful that she would be moved to the ward today.  He explained that Jessica had lost a lot of blood during the surgery due to the specialized procedure of Spinal Osteotomy.  Jessica will be moved once her blood pressure returns to normal as it is still low at 74/48.

Spinal Osteotomy(Smith-Peterson Osteotomy):  An osteotomy refers the fracture in the bone intentionally caused by a surgeon in order to facilitate correction of spinal alignment. In cases of severe kyphosis, or spinal imbalance it may be necessary to break one of the bones in the spine thru an osteotomy to mobilize the spine and reestablish spinal balance.

Dr. Ouellet broke Jessica's spine between T11 / T12 and again between T12 / L1.  The "T" stands for Thoracic and the "L" stands for Lumbar.  See below...



The Thoracic consists of 12 vertebrae(T1-T12)  and the Lumbar consists of 5-6 vertebrae(L1-L5).

We'll keep you updated!

ICU...The Next Hurdle!

Jessica Did Great!! 

 

     

     Dr. Ouellet spoke to us at approx 5pm. He was very happy with the way the surgery went. He was able to use the rods that slide in a track and do not need adjusting for growth every six months. This is very good news for Jessica as it means she does not need as many surgeries in the future. These rods are much more secure then the last ones and will help prevent the ongoing twisting of her spine which was successfully straightened out once again and let's hope it stays that way! Dr. Ouellet has decided that he will have Jessica casted in the next few days to create a soft brace which he wants worn for the next several weeks. He said that a couple screws at the bottom of her spine were loose and he hopes the brace will help set the new hardware in the healing bone. The brace is to be worn only when she is moving the most - while on the floor exercising and playing . Jess won't have to sleep or feed with it on.

We went into the ICU to see Jessica at around 6pm. She had already been extubated and was breathing on her own just fine. She was coming out of the anaesthesia but remained groggy due to the pain medication. As last surgery, there was a long bandage extending from the base of her neck to the top of her pelvis and lots of tubes and wires hooked up to her to monitor her recovery.







Jessica received some blood during the surgery this time due to the extensive work putting the new rods in.    This threw her blood chemistry off a bit and her red blood cells and platelets were low.  They are working on bring the levels back to normal.  She also had some blood in her urine which was causing some concern but luckily it cleared up in a couple hours.  Jess seemed to have a bit of problem with the morphine this time, she vomited a few times and required suction to clear her mouth and throat...this is not uncommon for such a strong medication.





The ICU is an amazing place with fantastic nurses working one on one with the patients.  Jessica had an outstanding nurse which had solutions for every hurdle Jessica threw at her.

As expected, Steph wouldn't leave the hospital and I peeled away around 10:30pm in hopes of getting the blog out before it got to late.

There is a good chance Jess will be moved to the ward tomorrow where she will remain until we are discharged.  Until tomorrow...

The Surgery Day!!

Had a great weekend with the Salmon Family and headed back to Montreal late last night.  It was nice to relax this past weekend and enjoy the little bit of sun that we had.

We had our alarm set for 6:30am, but Jessica's interal clock got us up at 6:00am.  Thank goodness that she did, because it was perfect timing for everything that we needed to do.  Jessica had an early bath along with a scrub down with some special soap.  She LOVES her baths, but wasn't too sure with the shower after. 

We put her warm PJ's back on for the trip over to the hospital.

Bundled her up for the brisk walk from the hotel to the Hospital.  She was all smiles and giggles this morning.

It was a very quick process to register.  Once Jessica was changed into her hospital gown, she became VERY quite and VERY cuddly.  She knew...which made me a puddle of goo.  Good thing Steve held it together for the both of us!

We wrapped her up to keep her warm and then headed down to the Operating Room.  There we were able to talk to the surgeron who basically said he ultimately would like to anchor her back so that it stops twisting, but still allow her to grow.  He didn't know if this would work until he got in there and tried.  It is dependant upon whether he has the room to do it seeing as Jessica is still small.  Fingers crossed that this works, because if that's not sucessful, he will have to put in rods that will need to be adjusted every six months which basically controls the growth for her.  That means Surgery every six months...NOT GOOD!

Now we wait...approximately 6 hours.  After that, she will be placed in ICU for the night.  I will post with updates.

One Day, 4 Appointments Later.

Today started off...early! 5am was Jessica’s internal alarm clock which wasn’t synced with ours!

Our first appointment was to have a CT scan. We thought things were organized to have Jessica sedated, but found out the requisition did not state that. We tried without sedation with no success. We then continued with the other appointments hoping that they could arrange sedation later in the afternoon...fingers crossed. Jessica also had ECG, a pre-op work up and consultation with the anaesthesiologist. Luckily, Jessica had nothing to eat this morning and we were able to squeeze the CT in the afternoon with some amazing nurses pulling some strings! We were able to watch them put Jessica to sleep and the nurse was asking if we were alright. This part was a breeze knowing that she wouldn’t be waking up with pain. Monday will be the tuff one!

I thought I would start typing this blog on our way back to Ottawa and kill some time being stuck in Montreal traffic. The stop and go doesn’t help with motion sickness...ugh and steve’s “creative” words for other drivers is starting to become amusing! Tonight we are heading to Steve’s brother’s house for some good ol’ family time and a home cooked meal...yummy!

Rise and Fall???

Apparently that was Jessica's new game at 5am this morning.  Sitting up and falling backwards then clapping....yeah!!!  I think she was just happy to share a bed with mom and dad!  No matter what we tried, Jessica was not going back to bed.  I finally got up with her and put the TV on.  She usually loves her cartoons, but I couldn't find any in english and she definitely knows the difference!  

No food or water this morning for Jess.  She still is very happy, however, mom and dad on the other hand are dragging their butts!  Her appointment this morning is at 9am.  I'll let you know how things go.

Hello...Bonjour!

I was hoping to post something a bit earlier, but we were having some internet problems.

Seven and a half hours later we have finally made it to the hotel room...whew!  We got stuck in traffic going through Ottawa and also in Montreal.  Nothing like sitting in traffic for 20 minutes and only moving 2 km's!  I'll take summer traffic in Huntsville ANY DAY over that! 

Jess did amazing in the car and was entertained by Barney, Dora, Backyardigans and funny sounds coming from DADDY!  Steve missed his hunting weekend due to work and was playing some deer calls from his phone.  Jessica was full belly laughing for a good ten minutes which had us laughing too!   

This past week has been a little stressful, but we have some GREAT friends and family that have helped us through this.  Jessica is very lucky to be loved by so many people.  It's pretty AMAZING walking through a store and having a stranger come up to us and tell us how "special" Jessica is and how she has put a smile on their face.  Not to mention all the children at School and Daycare that have made cards and posters wishing her all the best.

Above photo is all the cards from her school friends and the poster signed by all her daycare friends!

Tonight the three of us will have to SQUEEZE on a queen size bed! 

GOODNIGHT!



Before Surgery #2

I'm posting pictures of Jessica getting into everything because in...T Minus 14 days, it will stop.  Only for a short time, but that "short" time feels like a life time to me!  I have no doubt that her determination will get her back to where she is today. If Jessica wants something...she will GET IT!

 She will bang those pans for hours over playing with her favorite toy!

Remember those last x-ray photos?

See the piece of metal that is sticking out... 

  ...that is the bump on her back as of today.  The picture on the right is back in June 2010 and the picture on the left is from today. That bump is of concern because there is just skin protecting it.  See how big it has gotten...SCAREY!!!

 

 This photo cracks me up!  It's her red carpet, over the shoulder look!...hahaha!

It's amazing how much this little girl has gone through and yet she still wears one of these...

A SMILE!!

(minus a couple teeth..haha!)