So we got home Thursday, and I was able to enjoy some Thai food and wine with the family.  Then I had the BEST SLEEP OF MY LIFE!  It’s so strange to wake up and not have large groups of people looking at you.  I may need to buy some Grey’s Anatomy posters to hang up on my walls just to feel normal again.  Ben also slept well.

All seemed to be going well until Friday night about an hour after I went to bed and my brain started to go….tick…..tick….tick….and the worrying commenced.  “We’re missing something” I said to Jesse as I popped out of bed.  I went downstairs to my office to think through stuff.  Don’t get me wrong – I absolutely believe I have one of the best medical teams in the world.  I am so grateful for them, but I also am a huge advocate of what I deem as the “parent overlay”.  This is my intrinsic and all encompassing knowledge of Benjamin.  When I shut my eyes, I can’t picture what a normal spine looks like, but I can picture most of his spine – the curves, the hemi-vertebrae, the rods, the missing wedge, his once too soft trachea which has now hardened, his narrow nasal passages, etc.  I know his behaviours, how he responds to pain, his walk, his strength.  I don’t need to look anything up in a file – it’s inside me. So, when I got up that night, I started by thinking and overlaying my knowledge of Ben with everything his medical team told me.

We are all concerned because of Benjamin’s neck pain and his inability to hold his head up.  His neck is also stiff, and he has lost a lot of range of motion.  He used to be able to look over his right shoulder, but now he can’t.  He appears to be looking down a lot.  Today he also complained about pain in his upper arm.  This just doesn’t make sense.  We only did surgery to the lower cervical spine – starting at C7.  He shouldn’t be feeling pain up in his neck.  This is strange not only to me, but to his doctors and his team as well.  He is also TERRIBLE at giving information about pain, so it’s driving me a bit batty!  It is a pain in my neck!!!

I am trying to discern whether my restless, worried feeling is just natural post-op mom stuff, instinct, fear, or the sinking realization that I’ve come home and nobody is preparing my meals for me and washing my floor for me regularly.  When I booked Ben’s physio appointment the other day, it was with the same physiotherapist who stretched him when he was a baby.  I have mentioned before how Jesse and I used to stretch him five times a day for the first year of his life.  One night I stretched him and he seemed ‘weird’.  He was crying (as he usually did when we did physio), but then he just stopped and was still for a few seconds.  His face changed momentarily.  I had gone to our orthopedic surgeon to question him about this ‘episode’ the day before but we didn’t get clear answers.  The next day he stopped breathing entirely (as discussed in my previous post Uncertain Beginnings Part B).  In hindsight I now know that I blocked his soft trachea with the innominate artery from his heart when I rotated his head in the stretch.  Because he was so little and his lungs were so small I literally strangled him for a few seconds.  I’m not sure why it only happened that time, but I am told that tracheomalacia (soft floppy airway) gets worse around this time.  When I stopped the stretch to look at him to see if something was wrong, he revived as soon as I took that pressure off his trachea.  So maybe my unsettledness has to do with going back to the same physio and doing the same stretches again.  A little too deja-vuey perhaps!

Tonight I was able to talk back and forth to my team back in Montreal, and they made me feel a bit better.  When I asked questions, the doctor seemed to take me seriously and sent me frames of Ben’s CT and explained what I was seeing.  He also gave me the go ahead for (gentle) physio, so that will begin Wednesday.  We will also try anti-inflammatories on top of his other medicine starting tomorrow to hopefully reduce whatever is bothering him.   Normally, we would not use anti-inflammatories after spine surgery because it slows bone growth and delays healing, but we will do it short term to see if it can help.  I hope we can improve his comfort and his neck strength a bit this week.  I am taking “Before” picture optimistically.

Yesterday we celebrated both Easter and Hannah’s birthday that we missed because Jesse and I were in Montreal.  Ben woke up first thing in the morning and went hunting with his Easter basket.  We were like “hey – wait up!”  Then he proceeded to eat chocolate for breakfast.  Hannah was a bit more restrained.  The adults played a rather cutthroat game of Risk (in which I dominated the WORLD!!!), and the kids did their own thing play with their toys and games.  So, all in all it was a nice quiet weekend.

Uncertain Beginnings Part A 

Uncertain Beginnings…..Part B