The Road

We are now a week out from surgery.  Hard to believe it's "only" been a week.  I feel like the surgery was about 5 years ago at this point.  The whole week has been somewhat of a blur.  I'm not really sure how I'm functioning or standing to be quite honest.  I can count the hours of sleep I've had in the last week on my fingers... and I only have 10, so you can do the math.  About 10 hours of sleep since last Monday night.  With a loving husband, great family and friends, a lot of coffee, and my typical determination, though, I have somehow made it to this point without forgetting to get dressed, forgetting an appointment, or forgetting a child.

The week has gone 'fairly' well.  But we are still having ups and downs.  Meagan's swelling continues to subside.  Matter of fact, the bottom of her face is mostly back to her "normal" look.  Her forehead and top of her head are still quite swollen, but it is a lot better than even a few days ago.  Some of the change is also in the shape and position of her head.  Meagan gained 3cm on her head from the surgery.  It's kind of ironic to me - she was born with a head too big... and now had it made bigger because it had sunken too small.  Oh what a way to come full circle.  

Swelling continues to go down!

Meagan has a lot of times during the day when she is 'herself.'  She will coo, babble, look around, hit her tummy with her hands, and smile.  But then she also has episodes during the day when she will flinch and make a painful face, cry out randomly from a sound sleep making her upset,  or suddenly, for no obvious reason, get incredibly fussy and be literally inconsolable for 2 or more hours at a time.  I'm sure a lot of these up and down behaviors are post-op related.  I remember back to my c-section (which was a cake walk compared to Meagan's surgery), and even 3 or 4 months out, I had twinges of pain that would stop me in my tracks... so I can't imagine what she's feeling when she is having a down day or a painful moment. 

Meggy during one of her episodes.

 I'm also cautiously watching her behaviors because of her shunt.  The Neurosurgeon told us there was a pretty good chance in the weeks following her surgery of her shunt malfunctioning.  He said because the surgery was so invasive, and her skull was manipulated so much, it could definitely impact the functionality of her shunt.  She has had episodes in the last few days where she will scream inconsolably while grabbing behind her right ear (where her shunt is).  She will wince and scream more if I run my fingers along her shunt catheter, and flails her head backwards because of the discomfort.  But again, it is very hard for me to tell if these episodes are pain related due to surgery, or an impending problem with her shunt.  It is difficult for me to tell because so much has changed with her since the surgery, I can't determine what the culprit is.  Only time will tell, so I will continue to watch her and log if these episodes become more frequent.  She sees Dr. Reisner again on October 3rd for her follow up appointment.

That said, there are still many moments during the days when Meagan is Meagan again.  Her smile can brighten up any room, and make your gloomy day turn to sunshine all in a matter of seconds.  She sleeps well, almost better than before surgery, and is definitely getting her rest.  

How Meagan sleeps these days.. mouth open, passed out!

I was driving the girls to school the other morning when we turned on to the main road.  What had been a smooth sailing ride the day before, was now stopped traffic. Orange construction cones. And many bumps and turns along the way.  I was so frustrated because even though we left with plenty of time, these new obstacles were going to make us cut it very close, if not be late for school and a subsequent doctor's appointment. Today, when we drove the same way today, it was a smooth uneventful ride the entire way.  It became clear to me at that moment why people say "road to recovery."  The road may be clear one day, and then may be full of stops, bumps, and obstacles the next.  I have to remind myself of this as Meagan continues to recover.  Everyday is a day closer to getting back to "normalcy" (whatever that is for Meagan), but along the way, the road to get there may take a few turns we don't expect.  In any case, it's a road we'll continue to travel.  And if more twists and turns present themselves along the way, we'll just slow down, be patient, and knock out obstacles one at a time.  Meagan's road to recovery is still under construction...but we are definitely in a better place this Wednesday than last.  

My sweet girl!