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