MRI, Sleep Study, and Surgery

The past couple of months have been busy, emotional and kind of a blur.  We had met with Dr. Krakow at Cedars for his 4 month appointment and since he was having night sweats and some trouble breathing while sleeping, she ordered an MRI to assess his spinal cord and whether or not there was severe compression.  

On September 6th, we returned to Cedars for the big event.  Luckily, I was able to have the day off from my sub-internship but I was in the middle of residency applications so stress was at an all-time high.  While we were in the imaging waiting area, I was frantically emailing attendings about getting my letters of recommendation turned in on time.  An attending I had when I did my internal medicine rotation at Cedars was going out of town that day and I was trying to catch her before she left.  I was debating on whether or not I had enough time to run to her office while we were waiting for Sam to be called back for his MRI.  Then a miraculous thing happened.  Just as I was leaving the waiting room, I spotted my attending IN the same waiting area reading the email I had just sent her!  The look of surprise on both of our faces was probably insane...we were both pretty speechless.  She was waiting for a patient who was also getting an MRI and she was leaving out of town right after that.  If I had gone to her office, I would've miss her completely and possibly missed Sam getting prepped for the MRI.  She agreed to send in her letter within a week and was ecstatic to be able to meet Sam and Kael.  It was the most amazing thing and much needed during that moment of stress and confusion.  

We then got taken back to prep for Sam's MRI.  His anesthesiologist was a really kind woman who  had extensive experience giving anesthesia for kids with achondroplasia and reassured us that every precaution will be taken for Sam's neck and spine.  Kael and I then waited about 2 hrs (we got empanadas across the street) until we could meet Sam in the recovery area.  Seeing Sam with an oxygen mask on and multiple wires and tubes hooked onto him was heartbreaking.  That moment somehow brought out an unbelievable and tangible protective instinct in me that seemed to push every other thought or emotion out of my head.  I couldn't have helped it.   Being a mother has changed me physiologically and that tie that holds me and my child together is forever a part of who I am.      

Slowly waking up after his MRI

The results of the MRI showed compression of his cervical spinal cord and decreased flow of the cerebrospinal fluid around that area.  What's unusual in Sam's case is that he has increased compression when his neck is in extension (head looking up).  Most achon kids have it when they flex their necks.  Due to those results, we got a sleep study to see how it was affecting him clinically.  We did our sleep study at UCLA and it was kinda fun actually.  It felt like we were at a hotel.  A hotel where they stick 20+ wires to your child and videotape you while you sleep.  Yeah ok it was a little weird.  The tech came in around 9:30 to get things set up, left around 10ish, came back in around 2am to adjust a few wires and then woke us up around 5am to check out.  Despite the lack of sleep, Sam did relatively well except for a mini meltdown right after the wires were put on (see below).

Happy kiddo for now

Watching TV with daddy

Mini meltdown :(

So the sleep study ended up showing a combination of central and obstructive sleep apnea.  Central sleep apnea is caused by the compression in his spinal cord, which affects the brainstem.  That is where the respiratory control center is that tells your body to breath.  For Sam, he'll occasionally stop breathing and then "snap" out of it after a minute and he'll overcompensate by increasing his respiratory rate (hyperpnea).  The obstructive sleep apnea is caused by the increased size of the adenoids and tonsils in comparison to his facial and airway bony structures.  This is not as serious as the central sleep apnea and can be corrected later with CPAP machines or removal of the tonsils/adenoids.

After much discussion with the neurosurgeon Dr. Danielpour, Dr. Krakow, other parents of achon kids, and, maybe most importantly, Kael and the rest of the family, we've decided to go ahead and have decompression surgery in his cervical spine.  It's scheduled for November 6th and we'll expect to be in the hospital for about 3-4 days.  Wish us luck and we'll do a post to update everyone shortly after.

Much love,
Heather