Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, September 4, 2012

Craniosynostosis Reconstruction Surgery and Recovery Part I

Meagan got checked in this morning around 6:30am.  We went back, got her vitals, and got her ready to be taken back to the OR.  Dr. R and Dr. W came in to go over details of the procedure.  They explained how they would be breaking apart her sutures, and leaving "islands of bone" which would then hopefully expand to grow back together at a later date without causing pressure on her brain (as her current overlapping was doing).  Dr. R explained his part of the surgery as taking Meagan's skull apart and taking care of the brain, following which Dr. W (the plastic surgeon) would come in and reconstruct her skull, leaving spaces where it had previously been fused with these "islands of bone" Dr. R talked about.  We signed the last few consent forms, and then waited for the OR nurse.

Daddy got her dressed in her gown and socks (which were way too big by the way).  She was all set, and around 8:30am, her OR nurse came in to take her back.  She was awesome.  Turns out she had just finished up her second tour in Afghanistan, and was now working at Children's.  I was very happy we got her.  She was direct, down to earth, and very personable. We walked with the nurse and Meagan to the OR doors.  Brian and I gave Meagan kisses and told her we loved her, and watched her disappear back into the OR.

We went back to our room to wait.   We got a call letting us know that Meagan had gone to sleep ok and surgery was starting.  The next report was towards the end of Phase 1 of the surgery, round 10:55am.  Then we waited.  And waited. And waited.  Finally around 2pm, we got word she was out and being wheeled to the ICU.  We got to see her briefly in the hallway on her way to her room.  We had to wait about an hour for her to be settled in and the physicians to do their initial exam.  Then we were walked up to the PICU.  She was screaming.  The nurse was trying to calm her down. Meagan was CRAZY. I took her from the nurse, and for about 2 minutes, she calmed in my arms.

 But after only a few minutes, she was crazy again.  Very restless, arching her back in my arms, throwing her head back, and screaming. She would lift her knees and legs and slam them on the bed. There was no calming her.  

The ICU doctor finally came in.   She said Meagan was very agitated coming off of the anesthesia.  When I asked about pain meds, considering how fussy she was, the doctor told me she already gave Meagan morphine, and had even given an extra dose since she didn't calm down.  She said there wasn't much else they could do.  I was a bit frustrated because of course, I didn't want to over medicate Meagan... at the same time, she just had major brain and skull surgery....and I knew she had to be severely uncomfortable, and frankly, disoriented.  She also couldn't  open her eyes, which was HUGELY frustrating.  She is normally such an alert baby who loves to look at things and people, that it had to be extremely hard for her to not understand why all this was happening.

Meagan's behavior was getting to the point of being ridiculous. Something had to be done.  She had now flung off her arm guard from slamming her right arm on the bed so hard... her other arm was flailing so badly, it knocked out her one line that went directly into her artery (Thank GOODNESS it clotted or it would have been a much bloodier mess), and she kept arching in bed writhing her body and kicking her legs, so hard that it was pulling the oxygen tubes out of her nose and her other lines out of the monitor. She was screaming and thrashing.

At this point I was getting angry and was trying to get the ICU doctor to demand she give Meagan something to help calm her down. Not more  pain meds, but something to take the edge off while she was adjusting to recovery. She was obviously uncomfortable, and every limb was taken up with IVs or bandages, so she had no way to soothe herself. The ICU doctor was not receptive to my request for a calming med. 

Luckily, just a few minutes later, Dr. R, Meagan's Neurosurgeon, happened to be on his way back to surgery but decided to stop by and see how Meagan was doing.  I am so glad he did.  He came in and saw the state Meagan was in. He saw her crying, thrashing, and inconsolable.  He immediately said "Oh poor baby" and agreed she could not stay in that state all night.  He picked up his phone.  He called the ICU doctor and asked her for something to help calm Meagan down.  The next thing I knew, the nurses were in our room giving her Ativan, and within a short time period, Meagan calmed, and fell asleep.  I am so thankful Dr. R stopped by on his way to the OR... and thank goodness he is such a great advocate for his little patients!

Finally resting comfortably


As for now, Meagan's head is wrapped very well.  They did not put in a drain because Dr. R said that actually causes more risk to kids with shunts. We should be able to have the dressings removed in a day or so and learn how to apply the medicine to her incisions.

She is doing much better now that the Ativan has kicked in.  She still wakes up and moans or wimpers, but then she will fall back asleep.  This is a huge improvement from her earlier state.

The bright part of the evening, was Meagan getting a few nice surprises today.  Meghan, another little Hydro girl, sent our Meagan a little "goody bag" with special treats for Mommy and Daddy, a balloon, and also a really cute bear to cuddle while she gets better.  Also, her good buddy Claire stopped by with her parents, Brad and Amy (I have mentioned them before and you can read more about Claire here.)  They are dear friends.  We had fun visiting with them, and Meagan really enjoyed seeing her friend.  Also, Meagan was really thankful to Claire because she brought her very special hospital gown for Meagan to borrow while she is here!  Meagan also liked the very cute brightly colored happy animal for her to look at in her crib.

Meagan loved seeing her best friend Claire

Meagan really enjoyed her special gifts from Claire and Meghan

 I am going to make sure the nurses stay on top of Meagan's discomfort.   If Meagan does well through the night, then tomorrow they could step her down to a regular recovery room and move her out of the ICU.  So fingers crossed tomorrow she improves and we can move.  Her head and eyes are very swollen, and I know this is only the beginning of recovery. She is still in a lot of pain, but, as always, she's handling it like a trooper.

Love you sweet girl!


  1. What a rough day for you guys. I'm sorry the ICU Dr. was so insensitive. Grrrr!! I love that you guys get to live so close to so many other hydro babies. So awesome! I hope things go well tonight and poor Meagan gets some relief.

  2. Sweet baby girl. My prayers are with you both. My heart hurts thinking of her so uncomfortable and in pain. St. Gianna pray for sweet Meagan!!