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!