Hi Everyone,

I have never written a blog before, but I figured since I have been inundated with messages, texts, calls and emails that I would write this ONCE instead of multiple times.  I apologize in advance for any typos - it is late and I am tired.  I am sorry that I have been slow to respond and haven’t replied to everyone – I am just completely overwhelmed and 100% focused on Brody’s health and recovery.   I hope you understand that my family is my focus and needs to be the only thing I am spending my time and attention on.  With that said, I figured I would write this so that everyone is updated on what has been going on and I don’t have to repeat this so many times. It has also been somewhat therapeutic to write it down.  This was initially intended to be a short post, but is a little longer than expected – so I apologize for that as well.  Your words are heard and appreciated and knowing that there is so much love and support for my family, is definitely heart warming and helps me get through this very difficult time.

My family has certainly faced our many challenges over the years, but this incident is different. It was a scare that was totally unexpected and stopped me in my tracks.  I am very sad to say that I was not home when the initial situation took place because I was at an overnight planning session for THREE TO BE’s PAL in Collingwood. That morning the kids were at my house with our PSW and Jason.  Our PSW, who is wonderful and has known my kids since they were one, and who is with the kids every night for overnight/morning care was feeding Cole and Taylor while Brody was (not so patiently) waiting for her to finish with them.  When she looked over at him she noticed that he was making strange faces with his mouth that were done in a rhythmic motion.  Brody is a funny kid and often times makes weird faces.  This time was different so she stopped feeding Cole and Taylor and tried to get his attention, but he wouldn’t respond.  He then started to turn blue from not breathing and she ran to the bedroom to wake up Jason who (in a panic) came to the front.  When he got to the front of the house he tried to get Brody’s attention but Brody was completely unresponsive, his skin was grey and his lips were totally blue from not breathing.  His mouth was still moving in a rhythmic motion and his eyes were completely vacant.  He said it was the scariest thing he had ever seen.  Jason called  911 and put Brody down on the couch on a pillow and started to rub his sternum to try and get him to breath.  As the operator from 911 told him to start performing CPR, Brody started to faintly breath on his own and the colour returned to his face.  At that very moment the paramedics were there and everything was okay. 

When things settled Jason called me to update me on what transpired.  I was, as you can imagine, in a panic.  At that point it was 7:15am.  Based on what I was told, it sounded like he experienced his first seizure since the NICU almost 8 years ago.  The fact that he wasn’t breathing was terrifying and I was so worried that it would happen again.  It was outside of his character and medical history for this to happen, but since Cole was diagnosed with Epilepsy at 6 years old, we were worried that this could be Brody’s new diagnosis as well. Anyways, we needed him to get to SickKids ASAP to get the tests done to see what was going on in order to figure out how to move forward.  Once the paramedics assessed Brody and gave him the clear, Jared got to my house to take him down to The Hospital for Sick Children.  I was already on the road heading back to the city at that point and after grabbing my car from home, I headed straight to the hospital.

When I got to the hospital the neurologist got to our room for the assessment.  Our focus at that point was the fact that we thought he had a seizure – nothing else was on the radar at that point.  Brody seemed very sore to me – his neck especially was very tender and he cried with transfers from his chair to the bed or my arms and his limbs were completely floppy – especially his arms.  I originally thought that it was because of the fact that his little body had been through a lot and was tired from the ordeal.  So the neurologist – Dr. Ingrid Tien did the assessment and asked a million questions. She was so thorough and attentive.  She ordered an EEG and even came upstairs so that she could get all of the questions in.

By 7pm, Brody had been there for 11 hours and we were on our way upstairs for an EEG.  The EEG showed no seizure activity that took place during the test, but it did show slowed activity indicating that he likely had one.  When we got back to emergency, Dr. Tien ordered more blood tests, just to be safe and to ensure that we didn’t miss anything.  In my discussion with her I told her that I have always felt that we were missing something with Brody’s diagnosis.  That he was always uncomfortable.  His body was always in pain and that his neck was so sore. This particular day his neck seemed worse than others. 

When we were waiting for the blood test to get done Brody was sitting in between my legs on the bed in our room of the ER.  His little arms were dangling and he had no strength. 

When I asked him to move his legs - he barely could, but could at least he could wiggle his toes. 

When I asked him to move his arms – he couldn’t. 

When I asked him to move his fingers – he couldn’t. 

Something was wrong.  It really clicked at that moment for me that something was terribly wrong.

I called Dr. Tien back in and showed her videos of Brody’s arm movements from the past few months.  I had videos of my kids on my iPhone and wanted her to see his typical movements as a point of reference.  Because she is a thorough doctor she advised us to stay for an MRI of his brain, neck and upper spinal cord.  That night we stayed as inpatients on the 7^th floor Pediatric Ward and waited for the MRI.  At 12:30pm the next day Brody went in for what was supposed to be a 30 min. test.  After an hour and 15 min. the nurse came out to let me know that they needed to also do a CT scan to get a better picture and that neurosurgery would be around to speak with me. 

I was terrified. 

Why did neurosurgery want to talk to me? What was wrong with my son?  What did we miss?  I was so scared. 

When the doctors came out they let me know that Brody has a condition called “Cervical Spinal Stenosis”.  This is a condition that is often times degenerative and usually happens in elderly people – not children.  But – given Brody’s very complicated birth history, he is at risk of such conditions.  It is rare, but for whatever reason when it comes to my kids, rare is their middle name. 

Stenosis is a thinning of the bone in the spine.  With this condition you are at risk of breaking your neck much more easily than someone who does not have the condition.  With Brody’s poor head control, this was another risk factor and the two together was a recipe for disaster and one that we were completely unaware of.

The second thing that the CT showed was a chronic (meaning it happened a long time ago) fracture in his neck.  So Brody essentially has a broken neck and has had it for a long time.  This was devastating.  My son is non verbal and could not tell us that he was experiencing excruciating pain every day of his life with every transfer and with every time we played with him or hugged him.  It was tragic to put it lightly.

The third thing was the fact that his stenosis and his fractured neck bone was putting extreme pressure on his spine which caused him to become paralyzed in his arms and could cause him to stop breathing at any moment. 

So – without much time to think we were advised to approve Brody to go under general anesthetic again to get a halo put on his head to keep his neck and spine place and take the pressure off the base of the spinal cord to begin healing.  We weren’t sure whether he would regain function in his arms, but we had to get this done in order for him to even have a chance and more importantly to ensure that he didn’t stop breathing at any moment. 

So within an instant Brody was in the OR to have this device put on his head.  Dr. Drake was the neurosurgeon to do the procedure. He told us that after reassessing next week, Brody would inevitably need neck/spinal surgery to ensure that this doesn’t happen again and that the halo would be on to allow the neck to heal and take the pressure off to avoid any more damage. 

Since then we had a rough beginning where Brody was in a constant observation room, not able to swallow or breathe properly, but has since gotten better, has a smile again on his face and is making a turn around.  He is the most resilient kid and has made me appreciate his big beautiful smile even more.  He is now in his own room and is allowed to explore the hospital in his chair.  After four days on bed-rest, he definitely appreciates it (and so do I).

When I spoke to Dr. Tien after we learned all of this, we realized all of the series of events and WHY everything happened and HOW it all happened. 

1)   His seizure was likely the body’s way of telling us that something was terribly wrong.  Just the same as a child who has a febrile seizure, it was a response to his body being under such stress. 

2)   The not breathing part was likely the pressure on the spine.  If Jason wouldn’t have picked him up out of his chair and laid him down on the couch relieving the pressure on the spine - he likely wouldn’t have started to breathe. 

3)   The fact that Brody’s physical disabilities are so severe and complex we really didnot realize that the discomfort he seemed to have was something different than the typical pain he has from having such tight muscles as a result of CP.  This neck pain seemed to be just a part of who he was and how his disabilities presented themselves. 

4)   The fact that Brody is non-verbal and because his team still hasn’t figured out a communication device that works for him, he wasn’t able to tell us that he was experiencing such pain and discomfort. This for me is the MOST heartbreaking part.  If only he could tell us… L

It is beyond words heart wrenching for me as his mother that Brody has been living with a BROKEN NECK and has been for a long time.  Now it all makes sense - every time anyone would pick him up, he would grimace and sometimes cry. I feel terrible about this and I keep crying just thinking about it.  Now when I talk to Brody and I tell him that I know he has been in such pain and that we are going to fix his neck – he smiles.  He knows that I finally know and that he will no longer be living with such fear of being picked up and hugged.  I can only imagine how he has felt. It kills me. It really kills me.  There is nothing in the world like being a mom and wanting to protect your children from anything bad. I wish I knew sooner L

This week we will continue with therapy and recovery and on Saturday Brody has a CT scan to see how everything looks and to discuss next steps.  We will hopefully then know when and if surgery is the plan.

Taylor and Cole have been wonderful through this and extremely worried about their brother.  This weekend they are going to see each other for the first time.  I can’t wait to have them all together again.

Thank you again to everyone for your love and support during this difficult time.

Love,

Dana xo