Jack's Surgery Blog

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

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.

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Jodi

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

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

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

Thursday, 7:30am

Jack had a relatively restful night and is still in the Critical Care Unit.  Overnight he started breathing on his own again, which is really positive.  The doctors are hopeful that Jack can come back up to his room on 5C  today.  Jack now needs to recover to a point that doctors can proceed with testing the language function in his brain.  We are hopeful that this will happen today or tomorrow.  Once they are able to get this information, we are really hopeful that they will be able to present us with a surgical plan to remove the part of Jack’s brain that is causing the seizures.  The next surgery may be next Monday.

Please continue to pray for Jack, our family, and his medical team.  Specifically, please pray that Jack’s little body continues to be strong throughout this journey.   His strength continues to amaze us.

Jodi

Wednesday, 4:00pm

Jack is out of his emergency surgery, which took six hours.  He had a large blood clot on his brain, which caused pressure and swelling, and his team has been able to correct it.   The team was also able to leave the grid on his brain in place (which was inserted on the first surgery), which is an essential part to be able to continue testing for Jack’s next surgery.  Jack is back in the ICU now and has assisted breathing during his post-op recovery.

Thank you for all of your prayers.  Please continue to pray that Jack can be strong while recovering from his second brain surgery within three days.

Jodi

Overnight Jack had a complication with his recovery and this morning it was discovered that he has bleeding and swelling on his brain.  He has been rushed back into emergency surgery and his team feels confident that they can correct the problem.  They are hoping that they can leave the grid from the first surgery still in place and still proceed with additional testing on his brain in the days to come.

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

Jodi

We are very encouraged that Jack’s recovery is going as planned so far!

Post-surgery, Jack remained unconscious yesterday afternoon in the ICU and rested relatively comfortably overnight.  He woke up a number of times throughout the night, but for the most part his pain was managed well.

I am in awe of how he is doing this and am amazed by the other children around him too.

We are also so grateful to Jack’s medical team.  During yesterday’s surgery, up to 20 people were in the operating room at the same time!

Jack had a CT scan this morning, which confirmed that the surgery went as planned yesterday, and is now resting up on 5C.  He drifts in and out of sleep and remains quite groggy.  He doesn’t appear to be in too much pain and, understandably, only gets really bothered when being poked and prodded.  The doctors are now analyzing his seizures and are hoping to do more testing tomorrow.  Jack’s nurses are also incredible and treating Jack like the special little guy he is.

As for Dave and I, we are both holding up really well so far.  We’ve been able to get some sleep and I was able to get out for a run this morning.

Please continue to pray for Jack’s recovery and that the information the doctors are gathering will lead to Jack being able to have the second surgery, which represents a potential cure for him.

And please continue your notes, thoughts, cards and prayers.  They are really making a huge difference to Jack!

Lots of love,

Jodi