I again want to thank everyone for your love and support over the past three weeks.  Merry Christmas to all my friends who celebrate.  Living at the hospital at this time of year is obviously very hard, but it is also heartwarming to see the efforts that the hospital goes to, to make this time of year as special as possible for those of us that have no choice but to be here.

    

Visit from Santa before the traction procedure

Music therapy with the BEST therapy clown - Ranger

   

To think that there are approximately 370 other families here as inpatients that have to “celebrate” the holiday season and new years in the hospital – it makes you really take a hard look at your life and appreciate the times when your family’s health is in order.  Health is the best present anyone could ever receive.  When you are with your family over the holidays just be grateful to have them in your life. 

 This quality time with Brody has been very special and I haven’t taken a second of it for granted.  Brody is honestly one of the most special and beautiful people I have ever met.  He has a soul that is so pure, honest and true and I am so lucky to call him my son.  I have been cherishing my time with him because we could have lost him and it is hard not to think of that when I look at his beautiful brown eyes.  

   

In terms of an update on how things are going with Brody - let me start by saying that he is stable now and is doing well – all things considered. 

It has been a tough couple of days to say the least, but Brody is now showing signs of improvement. 

After we discovered that his halo moved a few days ago, he needed another procedure.  It is called a traction, which involved removing the old halo, readjusting it in the correct position and adding two extra screws in his head.  They then attached the halo to a hook, which is connected to a pulley that is attached to a weight that hangs over the bed. 

                                                    

                                               

This almost medieval looking device that makes me feel like we are in the 1700s is intended to naturally pull the neck so that it allows the vertebraes of his spine to decompress and relieve the pressure to give the surgeons the opportunity to work with a “better” situation when they inevitably need to go in for surgery.

When Brody got this contraption he was then obviously ordered to be on hospital bed rest.  So everything he does, he does it from bed.  He eats with his head back and is of course on a pureed diet. His food is administered through a syringe so we have had to be very creative with how we give him his food.  He has Mac and cheese through a syringe, Chicken with mashed potatoes, green peas, cranberry sauce and gravy through a syringe. I even figured out a way to get his favourite (a chocolate chip muffin from Tim Hortons) watered down and put through a syringe.  I also discovered the squeezable PC organic fruit and vegetables purées that he absolutely loves and has one with every meal.  He eats these meals with his head back, very slowly and hooked up to a saturation monitor to ensure that he isn’t aspirating.  But – he is managing and is enjoying his food – as he always has.

He also has to go to the washroom in a bed pan lying down on his back - imagine how awkward that is.  Well – Brody just deals with it and makes it happen. He also watches TV with these special glasses that Childlife (thank you Alexis) brought to Brody, which has reflection lenses so that he can see what is happening at the end of the bed without moving.  It is pretty incredible! Brody is just dealing with everything and is doing it with very minimal moments of frustration.  When he gets upset I just give him a massage and he relaxes.  What a kid.  He is honestly the most resilient boy. 

    

When Brody had the procedure a few days ago, the position was not better (it was actually worse) and Brody was close to needing an emergency surgery to correct the issue.  Luckily, with repositioning and constant x-rays they were able to get him in a better position with better alignment.  This has shown to improve the state of his injury by decompressing the spinal cord and relieving some of that pressure.  If we can keep adding weights and get things aligned, than a successful surgery in January is more likely.  So – with each passing day we have this traction device doing its job – the better. I am just so hopeful that this will work. I really appreciate everyone’s thoughts and energy that is going towards my son – I do think it is helping us in some way. 

 

As for my other two amazing kids – they miss me.  They miss their brother.  And we miss them terribly.  They are being so wonderful and understanding during this time.  My daughter apparently wanted to sleep in Brody’s PJs the other night so that she can feel Brody.  Taylor is such a thoughtful and compassionate little girl.  I love her.  Cole keeps making cards for Brody and wants me to tell him how much he loves him.  I am so lucky to have such wonderful children with such empathy for their brother.  It makes me so proud to be their mom. They even came down today for a visit and we had the most wonderful time with them all together.  Brody squealed with excitement when they entered the room – the bond they share is one of a kind.  They have all had their extended stays in the hospital for different things and they have learned to roll with the punches and make the best of these kinds of situations.  I continue to learn from my children every day. 

Brody so excited to see his sister :)

                                   

                                                                              

Coley playing with Brody's iPad 

                                             

Thank you again for your love and support and happy holidays to everyone. Lots of love to you and your families.  

All my love,

Dana

xo

Trust your gut...

Always trust your gut as a mom and don’t put what you feel aside (regardless of what is being told to you) if it doesn’t feel quite right.  This was my lesson and reminder to myself today. I will remember this every day moving forward.  

As soon as my day at SickKids began, I knew something was different with Brody.  He was unsettled, uncomfortable and was trying to tell me something.  When I touched his neck, his whole body would respond and he seemed to be very uneasy. Since having the halo put on two and a half weeks ago, Brody has been much more comfortable – with a smile and a sense of peace about him.   

Today he was different. When I asked him - he told me he was in pain by clearly displaying a sense of discomfort.  

Usually every morning the neuro-surgery team consisting of 6-10 doctors/surgeons come into your room (usually at the crack of dawn before you have a chance to even put a bra on or brush your teeth) and they do a quick assessment of Brody and then tell you the plan.  It always happens very quickly.  This morning they came in and confirmed that the plan today was to get things set up to transfer Brody to Bloorview until he is ready for surgery (in January).  I was all set to go along with this plan of action until I found out that he wasn’t going to get active rehab at Bloorview because he hasn’t had his spinal surgery yet and more so because something didn’t seem quite right with him today.  So- we had an x-ray done in the morning to check the alignment and all day long we were awaiting the results of that.  

I knew in my heart that transferring him to Bloorview wasn’t the right move (just yet) and that given he has had a tough day – the team should really reassess him.  What if the halo wasn’t doing its job?  What if the pressure is back on his cord? Why do his hands and arms have tone and movement in some positions and he seems completely paralyzed in others? What if the pressure is back on his cord which causes him to stop breathing?  These are the things that were going through my head today and what I was communicating to the nurses, therapists, etc. to try and get them to get the surgeons to come up and talk to me.  I knew that today I was being extra “mama bear” annoying, but I had to do it because Brody needed me to.  Many hours went by and finally I was told that the neuro-surgery team would be up to speak with me.   

So – to pass time and to freshen Brody up, I decided to finally give him his daily sponge bath and hair wash that I usually do every morning.  Because today was extra busy, I hadn’t had time yet.  As I was washing his hair, I noticed that the bar that goes across the back of his head from the halo (that is supposed to hover over his head) was actually PRESSING against the back of his skull causing pressure. I am sure that it was terribly uncomfortable.  More than that - what worried me the most is that the unmovable halo must have moved!!!  Something that is incredibly rare…happened.  How????? I immediately called the nurse into the room to check it out.  She quickly left to get the neuro-team to FINALLY come and check on Brody and sure enough when they finally did they discovered what I was worried about all day- the halo HAD moved and unfortunately I was told that they have to put him under general anesthetic tomorrow to do another procedure.   

Tomorrow Brody will be having a traction procedure done where they will be removing the halo that is currently screwed into his head, readjust it with an additional two screws and instead of being attached to the vest that is currently on his chest, it will be attached to a six pound weight that will be attached to the halo and hung over the back of the bed to realign the spine to take the pressure off.  He will therefore need to be on bed rest for 7-10 days in a very uncomfortable position. After that we will see if he is fit to have the surgery and go from there.   

What. The. #@*@*!?!?!?!

I am sorry for my frustration but I am so beyond words upset by all of this.  Why is this happening and HOW did this happen?!  

Right now Brody is sleeping peacefully next to me as I type this.  He will be going through yet another ordeal tomorrow so please keep my little hero in your thoughts.  

Thank you,

Dana

xo

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