One step at a time...

Here we are on night 47 at The Hospital for Sick Children.  Brody has been doing very well over the past couple of days, but last Friday was a very different story.  For those of you who I am friends with on FB, you would have seen how happy I was on Thursday.  I proudly posted this picture of Brody and I, that read "I am so proud of this boy!  He is now breathing on his own, eating by mouth and sitting up in his wheelchair!  Nothing makes me happier than seeing this beautiful smile return to his face!" Well, 12 hours after I posted this picture, we had a real scare.

It has been a roller coaster for us - to put it lightly.  Things were on the up and up and then bam - we had a set back that required Brody to get an EEG and another MRI.  I am now happy to report that things are stable again, but I have learned not to get too comfortable because things can change in an instant. With anything in life, it is good to take things slow in order to make the most progress, so that is what we are doing now. 

It has been 12 days since his successful surgery (Occipital Cervical Decompression & Fusion with Illiac Crest Graft Procedure).  The surgeon was very pleased with the procedure because the fusion was strong and the position took the pressure off the base of the cord. Over the next 3-4 months the bones have to fuse together on their own now that the screws in his C1-C4 are holding them in place.  During this time he will have to wear the halo and vest and do intensive therapy to ensure that nothing moves out of place.  




Following the surgery, Brody had some complications with his breathing and had to stay in the ICU longer than expected.  He was in there for two nights to ensure that he was safe to go back to his room.  He was ventilated for a full 24 hours, which brought me back to NICU days when he and his siblings were babies.  The ICU is a very different place than the inpatient floor.  Every child is very sick and it is a very sad place to be.  

Brody did not look like himself.  He was attached to many wires, IV's, tubes and of course the ventilator.  Seeing his body move up and down from the machine pumping air into his lungs was devastating and indescribable.  Knowing that a machine was giving him life and if it turned off he would stop breathing was a harsh reality.  On day two post surgery, he starting breathing above the ventilator and it was pulled out to see if he could breath on his own with the help of an oxygen mask. 
His skin and eyes were puffy from all of the fluid being put into his body and he required a lot of suctioning to manage his secretions.  He wasn't able to eat by mouth for 5 days because of the intubation so he had to get his nutrition through an NG tube in his nose which went straight into his stomach. His eyes were also off centre and one seemed bigger than the other.  It has since returned to normal.


On that Sunday, he was discharged from the ICU and returned to the neurosurgery floor upstairs back to his room (in Isolation I might add for a bug that he picked up from being in the hospital for so long). Although I was quite upset that we were now in isolation, I was thrilled to be upstairs and back in our own room again.  Once he was upstairs things progressed slowly every day.  It took a full week, but he started eating again, breathing on his own, needing less suctioning and finally got to go in his wheelchair.  I couldn't be happier and then Friday happened...


Happy to get rid of his oxygen mask!

Gift from Janet!

Visit with Brenda!

On Friday morning when I was feeding him his breakfast he was sitting up in bed and started staring blankly at the ceiling.  He did not have a gag reflex and was completely unresponsive.  I was terrified.  What happened? Why did this happen?  Is he going to be okay?!  The neurologist came to check him out and ordered an MRI and EEG stat to be done that day to see what was going on.  She suspected that it was not a seizure (because he would blink), but something might have gone terribly wrong and we had to get to the bottom of it.  Right away we had an EEG and a couple of hours later, we went to MRI where I got to sit with him for the hour long test.  Wow is that ever loud!  I just held onto his foot as he was in that giant claustrophobic machine and told him it was going to be alright (not that he could hear me - but he at least knew I was there).

Long story short - the EEG showed abnormal background activity which may be a result of all this trauma he has been through, but showed no seizure activity.  We are going to redo that test after we are out of here and Brody is stable.  The MRI showed no changes in his brain and actually showed an improvement  in his spinal cord from the surgery.   So - what they think is that Brody moved too fast and had a moment of disorientation and confusion. They said imagine what it feels like when you get up too quickly after being in bed after an illness and you get light headed.  Well, Brody has been on his back for 7 weeks and then got into chair pretty quickly.  He probably got really light headed and his body responded. This makes total sense.  

So the plan changed and we are now moving very slowly. For the past week Brody has sat up little by little every day (first day up to 30 degrees, than 40, etc etc. until he was sitting up in bed).  Yesterday he went in his chair for the first time. He did really well and I am happy to report that he is moving his arms again, he is smiling and he is happy.  He has a long road to recovery, but is improving day by day.  When Taylor and Cole come this weekend, maybe we can all get out of this tiny room and go for a stroll.  That will be very nice.  

It has been a rough road for all of us. I cry all the time at any moment.  I feel a little broken. There are no words to describe how hard it has been. I miss my kids.  I miss Jason. I miss my bed and being home.  I miss life as I knew it before. 

It seems that we are one step closer now.  Day by day - it has been my approach since day one and is still my way of coping on Day 47.  Thank you everyone for your love and support.

Love,

Dana

xo

P.S. Thank you Chai Lifeline for the very generous and thoughtful gift of an iPad for Brody!  I cannot tell you how grateful we are!

Brody on his first stroll out of his hospital room!

Visit at home with Tay and Cole

Hockey at School!

So far...

- 16 hours in emergency at The Hospital for Sick Children

- 1 EEG

- 3 wards as an inpatient

- 9 painful needle pokes for blood work

- 7 IV insertions

- 1 arterial line insertion

- 2 night in ICU

- 3 CT scans

- 28 X-rays of spine

- 5 chest X rays to check for fluid in the lungs

- Countless pain management medications given

- 20 OT/PT visits

- 74 times doing pin site care of screws in his head

- 4 adjustments to halo placement

- 3 pin site replacements

- 1 pin site infection

- 1 positive test for MRSA (hopefully this turns out to be a false positive)

- countless sponge baths

- Many puréed meals given by syringe lying flat in bed

- 2 days of NG tube feeds through the nose

- 6 days of NPO - withheld from food or

fluids

- 1 MRI

- 14 days in traction

- 23 days in halo and vest and countless more ahead

- 4 times under general anesthetic

- 4 trips to the OR

- 1 major operation

- countless sleepless nights

- Many wonderful doctors, nurses and specialists tending to Brody's every

need

- 1st New Years Eve spent

- 2nd new year day in hospital since birth

- 8th birthday celebrated (his 2nd birthday in hospital)

- Many visits with Camp Aim Staff

- 1 best uncle award given to Jordan for being here so much with Brody

- Many random acts of generosity and thoughtfulness by many people

- Countless moments missing Taylor, Cole & Jason and wishing we were home with them.

Lots of pain, tears, smiles, relief, fear, happiness, sadness, disappointment, appreciation, love and emotion experienced since entering the SickKids Hospital doors.

All of this in just

38 days and nights in hospital...

Let's see what tomorrow and the next day bring. This is going to be a LONG road to recovery for Brody. Thank you everyone for your support during this never ending roller coaster of hospital life. Xo

Xo

Dana

29 days and counting...

We have now been here at SickKids for 29 days and I know that we have a long way to go.  Brody is handling it the best that he can, but it has been a challenge for all of us.  We have good days and bad days and thankfully today was a good day.

  

   

I haven’t written in over a week and a lot has happened since then.  Brody was in traction, out of traction and back in the vest.  The vest did not relieve the pressure the way it is supposed to and it was not straight when they put it on, so Brody had to come out of it and be put back into traction again.  It has been very hard on his little body, but his spirit is bigger than a gladiator, so he has overcome these obstacles time and time again.

  

We ended 2015 this year in the hospital and as a result spent TBC’s 8^th birthday, New Years, and all of the winter break here at SickKids.  

For their 8^th Birthday (I still cannot believe I have three 8 year olds!), we tried our best to make it as fun, happy and celebratory as possible.  The nurses sang happy birthday with cake, we gave the kiddies their presents and I decorated Brody’s room to make it extra special for everyone.   Taylor and Cole had a wonderful day, but despite all of the birthday distraction, to be honest – it was a tough day for Brody.  He was in a lot of pain yesterday and it was a struggle to get a smile out of him. I wanted him to just be comfortable and happy and there was nothing I could do to see that gorgeous smile on his face.  Instead the entire afternoon and evening was x-ray after x-ray and a lot of repositioning in the bed – which can be very painful when you are in traction.  It was hard for him and impossible for me to watch my love struggle the way that he has.  By the evening we finally got it right and he fell asleep.  Once I knew he was settled, I could finally breathe again. 

 

The thing about Brody during this whole ordeal is that he only complains for things that are really bothering him – the rest of the time he is happy and content.  He has handled this like a champion and I am so in awe of him and his spirit.

We make a good team, Brody and I.  I get him and he gets me.  We have been working with each other to make sure that he is comfortable.  Because Brody does not communicate verbally, the staff here (to no fault of their own) doesn’t always know how to communicate with my son.  So, as his mom I have to also be his voice and of course his advocate. He lets me know when things aren’t quite right and what he needs and I do my best to communicate that to the team. When the halo is off center or he has slipped to the side, he lets me know, I let the doctors know and things are dealt with. When he is pain, I figure out where and how based on his way of telling me and I let the nurses or doctors know and we work together to make him feel better.  It is the best we can do before we get Brody a communication device that works for him (boy am I anxious and eager to finally have one).

 

Anyone who knew Brody prior to this incident would know that he was a sensitive boy who was almost always uncomfortable and seemed to be in pain a lot of the time.  Now we know why he was so irritable and everything makes sense.  His personality has completely changed since relieving the pressure off his spine through the halo and traction.  He is now content MOST of the time and is a very easy going boy – something he has never been. I am so excited to get to know the real Brody.  The Brody that isn’t living in chronic pain.  The Brody that will have a communication device that works for him so that he can tell us exactly what he thinks, feels and wants.  I cannot wait for his exciting future, which is full of potential and hope.

I cannot wait to make it up to all of my kids and give them the fun birthday and break that they ALL – we all - deserve.  It has been more than tough on all of us.

So in terms of the plan moving forward, the holidays have made things much slower than usual because not all of the staff is here.  I am looking forward to Monday when Dr. Drake (the Neurosurgeon) is back to let us know the plan and of course the surgery date for his spinal cord decompression, spinal fusion and correction surgery.  It is likely that it will be next week but we will not know until Monday.  I will keep you posted.

 

Thank you everyone for the love, support, wishes and thoughts.

All my love,

Dana

xo

P.S. HAPPY HAPPY BIRTHDAY TO MY BROTHER JORDAN!  "Uncle Jor Jor" is the most amazing uncle to Taylor, Cole and Brody and always steps up to the plate in every way.  He has slept over at the hospital with Brody a number of times and is always there for me as my brother.  I love you Jordan.  Thank you for everything.

  

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