Archive for January, 2010

Jack awake and watching a StarWars movie

Saturday, January 30th, 2010

Saturday 10:30am

Today’s picture is a baby photo of Jack taken on a plane trip to Florida.  Throughout this time at SickKids, I’ve looked back on a lot of happy photos throughout his seven years and they always bring a smile to my face.

Yesterday was a step forward again, which was wonderful to see.  He was more alert and stayed awake for most of the morning.  Jack still has his feeding tube in but was able to eat a bit of ice cream and three french fries.  Jack was also moved to a reclining chair for a bit yesterday, which really tired him out as he can’t even hold his head up on his own yet.  Rehab is hard work!  Jack’s body has been through so much and he still has lots of drugs in him, so it will take a lot of determination on his part over the coming weeks to get up and around.  I know he can do it and can’t wait for the day when he can run down the hallway here!

The most exciting news though is that Jack has not had a single post-op seizure so far, which is incredible and hugely encouraging.  While it is still early days and he has a long ways to go, Jack’s brain has finally been able to rest from seizures since Monday – the first period of time in six years.  Prior to surgery, Jack had near constant seizure activity in his brain and his medical team described his left frontal lobe, the section that was removed, as “fried”.  So there are no guarantees that the seizures won’t return, but for today we are hopeful and the possibility of Jack being cured is seeming more and more like a reality. Having lived with a heavy heart since his diagnosis and watching Jack bravely battle seizures every day for years, I can’t even comprehend the impact of a potential cure on Jack’s life and ours.  It would be a dream come true.

Jodi

Two steps forward, one step back

Friday, January 29th, 2010

Friday, 9:00am

Yesterday turned out to be a rough day for Jack.  He regressed in his recovery and spent most of the day sleeping and being fairly unresponsive, which was concerning to Jack’s medical team.  The causes for this were investigated and a decision was made at 4pm to send him back in for another CT scan.  With vivid flashbacks to last Wednesday’s emergency surgery due to bleeding in his brain, this was terrifying for us to say the least.  The CT scan came back fine (thank goodness!) and his team said there could be a number of reasons contributing to his excessive drowsiness.

At 4am this morning, Jack woke up and appeared more alert than he has been in the past 48 hours.  He is reasonably awake again right now and just cracked his first smile since recovering from his first surgery while watching “Its a Bug’s Life”.  So today’s picture is of that smile and I can’t tell you how joyous it is to see him smile for the first time again.

Jack’s recovery and this whole surgical journey continues to be an incredible emotional roller coaster ride.  Yesterday was a tough day with bumps in the road but I’m hopeful that today will be more positive and another step forward.  The outpouring of love and support that we continue to receive makes a world of difference, encourages us and gives all of us strength!

Jodi

Jack’s recovery will be 8-10 weeks

Thursday, January 28th, 2010

Thursday, 8:15am

This picture was taken four weeks before surgery and is one of my favourite pictures of Jack.  I have this photo posted on his hospital room door so that all of the doctors and nurses who enter see Jack as the smiling, happy, mischievous boy he is.

Jack’s morphine has now been stopped and his pain is being fairly well managed.  He continues to sleep most of the day.  They have removed Jack’s head dressing so that the scars on his head can start to heal.  The multiple scars are large and  quite a strong visual for us.  Jack has not seen a mirror, but will reach his hands up and feel them occasionally.  I  am determined to have Jack feel confident about his scars over time and for him to come to view them as “war wounds” in his battle to overcome seizures.  Scars are an extremely small price to pay for a new lease on life!  I also need to find Jack some hats, so that he doesn’t feel self-conscious in the short-term.  Thank you to Lululemon who sent a hockey hat 🙂

We found out yesterday that Jack will likely be at SickKids for another week or two and then will likely be transferred over to be inpatient at Bloorview Macmillan Rehab Centre in Toronto for 6-8 weeks, where he will be part of their Acquired Brain Injury Rehab program.  This program will involve a combination of speech, physical, and occupational therapy to maximize Jack’s post-surgery recovery.   So it could still be a long time until Jack is able to return to Oakville, but every day things change around here, so Jack could end up being home sooner (or later) than anticipated.

The goal is to have Jack sit up in a chair today and to begin eating, so that we can remove his feeding tube.  His little body has been through so much that even sitting up will require tremendous effort.

Please pray that Jack continues to be the amazingly strong little boy he is as he begins his long road to recovery.

Jodi

Jack is resting comfortably

Wednesday, January 27th, 2010

Wedneday 8:00am

Jack rested comfortably throughout the night and is still on morphine, so he remains quite sleepy and groggy most of the time.  When he does open his eyes, he continues to be able to talk and move his legs and arms – this is SO exciting and the doctors are very pleased with this too!  Yesterday he developed a post-op fever, but it has now resolved.  We were also told yesterday afternoon by the Infectious Disease team that a growth developed on a patch in Jack’s brain in between Jack’s surgeries.  This is not concerning to Jack’s team, as the patch has now been removed, but will require a longer IV treatment of antibiotics for Jack.

Today’s picture shows Jack and I hanging out in his bed.  His room is so cheery and he has over 100 cards posted around his room!  Thank you again to everyone for your amazing support!

Jack is awake now and has just requested that I put on the TV, so I must run!

Please keep praying for Jack to recover without a lot of pain and that he will soon be strong enough to start rehabilitation.

Jodi

Jack can talk!

Tuesday, January 26th, 2010

Tuesday, 10:30am

Jack rested comfortably in the ICU last night and has been moved back up to the Neurosurgery ward 5C.  Today’s picture was taken in the ICU and shows him sleeping, with his stuffed monkey beside him.

I am so encouraged with Jack’s post-op progress so far.  The biggest surgical risks, other than the obvious risk of the seizures not stopping, were that Jack may not be able to talk or move his face, arm, or leg on the right-hand side of his body (the surgeons were optimistic that if these deficits occurred that they likely wouldn’t be permanent)…

So, I am THRILLED to write that Jack said “I love you” to Dave last night and I was moved to tears this morning when in response to me asking Jack if he wanted me to hug him, he opened his eyes and reached up and hugged me with this right arm.  There are no words to describe how this felt.

I am feeling really positive, optimistic and hopeful that Jack will recover well from this surgery and that he will be able to play his DS within a couple of days!

Please continue to pray that he rests comfortably today and that we continue to see no seizures as he recovers.

Jodi

Jack recovering from surgery…again :)

Monday, January 25th, 2010

Monday 3:30pm

Jack’s third brain surgery is over and Jack’s medical team feels that it went extremely well and as planned.  Jack’s left frontal lobe has been removed and the rest of his brain appears healthy from the surgeon’s perspective.  It was also really fantastic news to hear that Jack’s skull was able to be reattached during this surgery (part of it was removed and left off after the second emergency surgery) and that he will not be facing a fourth brain surgery later this week, which was a possibility.  Jack will now be going to the ICU shortly and I expect to see him within the hour.

This surgery has given Jack a 60% chance at a cure from his seizures and whether the surgery is successful will be revealed to us over time now.  Essentially, Jack will either continue to have seizures or he won’t.  At this point, due to many complicated factors, it is a wait and see game.

We are extremely overwhelmed by this possibility of a new life for our little boy.  Jack still has a long way to go in his recovery and it could take up to six weeks to fully recovery.  Over the coming days, we will better understand what Jack’s recovery may look like and develop a plan around it.

This picture was taken right before surgery this morning.  Again, Jack was playing his beloved DS as he drifted off to sleep.  I was also allowed to stay with Jack as he drifted off to sleep, which is why I’m wearing the suit and cap.

This journey has been extremely emotional and I can’t believe that Jack has endured over 20 hours of brain surgery within the past week.  He still has a long ways to go, but for today, we are thrilled and over the moon with joy.

I am amazed and inspired by Jack and so grateful for the skill and wisdom of his medical team at SickKids.

Thank you for all of your prayers and support.  Please continue to pray as Jack now recovers and we wait and see how his new life unfolds.

Love,

Jodi

Jack’s 3rd surgery has started

Monday, January 25th, 2010

Monday 8:10am

Jack’s 3rd brain surgery has now started.  The surgeons will be removing the grid from the first surgery and then removing Jack’s left frontal lobe.  The surgery is expected to last six hours and Jack will then be brought over to the ICU post-op.

Today could be the beginning of a new life, free of seizures, for Jack!

Please pray for Jack, our family, and for Jack’s medical team today.

Jodi

Jack having 3rd surgery tomorrow!

Sunday, January 24th, 2010

Sunday, 9:00am

We received exciting news yesterday that Jack is able to have his third brain surgery tomorrow morning  at 8:00am.  This surgery will involve the removal of his entire left frontal lobe (about the size of my fist).  The surgery will last approximately 6 hours and Jack will again go to the ICU (his third admission there within a week!) post-op.

He has a 60% chance at being cured of his seizures with this surgery.  There are risks involved, including potential speech and right arm mobility issues, but overall Jack’s medical team is confident that this is the best treatment option for Jack.  I am so grateful that Jack has this option, as many children with seizures don’t.

Jack is resting comfortably today and was able to resume playing his DS yesterday, as featured in today’s picture!  Christopher came for a visit yesterday and Jack really enjoyed seeing him.    Jack’s teacher, Mrs. Boast, also came by and presented him with a bravery certificate!

It makes my heart so warm whenever I think of the outpouring of love that Jack and our family continues to receive throughout this time.   I know that it is making a big difference to Jack.  THANK YOU!

Jodi

Jack is having ice cream for breakfast!

Saturday, January 23rd, 2010

Saturday, 9:00am

Jack is making a solid recovery from his surgeries and is well enough to have asked for ice cream this morning!

The medical team was able to successfully complete all of the essential testing yesterday and Jack did a great job throughout all of it.  The team was really impressed with Jack’s cooperation!  I was so proud of him!  The doctors now have all of the information they need to make a decision about the next surgery.

So, today is a big day.  At some point, Dave and I will be having a case conference with Jack’s team to discuss the potential for a third surgery Monday morning.  At this meeting, the team will present a plan for surgery and the associated risks.

Thank you again to everyone who has been so supportive and continues to keep us in their prayers!   It truly means so much to us and is really sustaining us through this time.

Jodi

Jack is being brave!

Friday, January 22nd, 2010

Friday, 8:00am

This is a picture of Jack taken right before his first surgery on Monday.  I am holding onto this image as he recovers from his two surgeries.

Jack is now back up on the Neurosurgery ward 5C and his recovering from his second surgery.  He still isn’t speaking very much and Jack was pretty uncomfortable yesterday, but started to drink a bit of milk late yesterday afternoon, which is a really positive sign.  Jack’s team had hoped to continue testing on his brain yesterday, but ended up not being able to because Jack was given infusions of morphine for pain, which made him too groggy for testing.

I am SO proud of Jack.  He is being so incredibly brave and enduring more than I could possibly imagine.  Yesterday, he bravely coped with:  arm and leg pains from his IV lines; nose pain from his NG feeding tube that goes into his stomach; eye pain from his left eye being swollen shut post-surgery; groin pain from his catheter; and his obvious head pain.

And thank you to everyone who has sent a card, gift or note to Jack!  His room is looking amazing with all of them posted!  Please keep sending them because I can tell that he likes looking around the room when he is awake.

Please continue to pray for the doctors and Jack today as they attempt the testing again.

Jodi