Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, July 11, 2014

Neurosurgery Update - Post Op Appointment

This Wednesday, Meagan was finally ready to get her staples out from her surgeries!  She was just about 3 weeks post op by then and we had an early morning appointment scheduled with Dr. Reisner.  I was fever free (thank goodness) and although not feeling 100% yet, got the all clear from my doctor since I was on the mend to take Megs to the appointment.  I did not want to take the other kids, however, as some were still recovering.  It was also a very early appointment so luckily our sitter was able to come so Meagan, Brian, and I headed off to Children's.

We arrived in the office and sat in the waiting room.  For the first time, Meagan did not cry.  She seemed almost comfortable recognizing where she was, looking around at the pictures and looking at the movie.  We were called back quickly and as soon as we pushed her wheelchair in to the hallway to go to the room, we saw the little nook where Blair and Dr. R sit during the day in between appointments.  Not a second later we hear from Meagan "Hiiii Blair!"  Blair looked up and was all smiles.  "Hi Meagan!" she said.  Meagan was kicking her legs in her chair, putting her head back, and grinning the biggest grin ever. Meagan would whisper "Elsa Blair" over and over as we walked in to the exam room. She was hilarious.

Blair followed us in to the room and brought her little kit with her.  She carefully removed all of Meagan's staples from her EVD site and also from her large shunt valve incision.  Meagan barely made a peep.  She didn't like me stabilizing her head for Blair to work, but she didn't cry or scream or fight. After the staples were removed, Blair just stayed and talked for a minute about how Megs was doing.  As she talked to us, instead of taking a seat, or standing in front of us,  she stayed there by Megs and just gently rubbed Meagan's hair.  Meagan's eyes began to almost close with each stroke, and when Blair would stop she would move her head for her to start again.  So Blair would continue, pushing her fingers through Meagan's hair so sweetly and rubbing her head in a caring way as she finished our conversation.  I loved that.

 A few minutes later, Dr. R came in.  He was just beaming when he saw Meagan.  Earlier I had forwarded him an email with the video of Meagan crawling. I asked him what he thought of that. He admittedly said he had come off a long day of surgeries and sat down to see the email in his inbox.  He was nervous and even asked Blair ahead of time if he should open it - he was so afraid Megs was in trouble or in pain again! My heart ached for his concern and I said "Oops! Next time we will label the emails 'Good News!' or 'Bad News' just for you!" He said he loved watching the video and he could not believe what a different child she was from just a month ago.  Not just the physical strength she was getting back and new progress she was making, but her overall look.  Healthier, happier, and more at peace.  I could not agree more.

We chatted a bit more about Meagan's surgeries, the shunt system he had put in, and how Meagan was doing over all. Dr. R was so happy to hear that Meagan was progressing again, regaining strength in her arms, and stabilizing.  Most of all he was glad to hear she was happy.. and pain free.  About this time, we heard a tiny voice say "Reisner...peek a boo!"  It was the first time I had ever heard her say his name without whispering.  We looked over and Meagan had picked up her blanket and was covering her eyes.  He looked at her and I said "I think she wants to play peek a boo." Dr. R  laughed and said "Where's Meagan?" She playfully pulled her blanket down and smiled.  Then again she put it over her eyes again and said "Reisner, peek a boo!"  I looked at Meagan and said while smiling  "Hey, that's Doctor Reisner to you miss!"  Dr. R humbly said "No, that's ok."

Yea, we have seen this before...but we love it.

After a few more episodes of peek a boo, Dr. R continued the neuro exam.  With each move, he carefully explained his reflex instruments to Meagan, and would check each arm, leg, and knee, even offering for her to help him.  No tears. No crying. No screaming.  He even was able to look and examine her incisions and open cranial vault without Meagan doing much more than blinking.  Once all was finished, we discussed briefly Meagan's open vault.  Dr. R will have to close that up when she is between about 4-5 years old.  It is a time we (and Dr. R as well) are not looking forward to mostly because that vault is such an open window in to what is going on in her head.  If she has temporary pressure from storms, or a slight clog, or any reason, that vault being open at least gives the pressure a chance to not cause her pain or symptoms since there is room to expand.  It also gives us clues about malfunction or things going wrong inside if it gets very tense or bulges.  It's an easily seen outside "cheat sheet" almost that will be missed.  Dr. R joked that maybe he would close it up the day before he retires.  I know what he meant - her having that vault closed will be scary.  I told him he'd better not! But we will cross that bridge when we get there.  In any case, it is something we will now have to watch that Megs is nearing 3 years old.  The time we can leave that area totally open is going to narrow greatly over these next 1-2 years so we will keep it on the radar and make a plan for surgery when appropriate.

Typically, Dr. R said going a full year until Meagan's next follow up would be ok, but Meagan being Meagan, he would prefer to do a shorter follow up.  However he said since she's doing so well, six months may be a bit soon, so why don't we split the difference and see him again in nine months.  We agreed and the appointment was over! On the way out every office staff said their goodbyes to Meagan and we headed home.

Once we were home, Meagan was right back to her mischievous self.  I felt badly she was missing out on a few playmates with Anna and Maura still recovering from strep and pneumonia (yes, it's been quite a few weeks in that department - don't ask! :) ), but she had fun with Reilly and Kaitlin just the same.  They played with cars, princesses, and Kaitlin even had Meagan "hiding" on the couch and ottoman when daddy came home telling her to say "shhhh!" before he walked in the door. It was very cute.

The best part of the whole day was realizing that Meagan had made it through an appointment without being upset.  Yes, she didn't like certain parts of it, but she never once screamed, cried, or showed fear.  She showed trust.  For the first time, she was showing complete and utter trust in her most important medical team, and telling them this through her behavior at her follow up.  I was so happy to witness this experience because it not only showed possibly some cognitive awareness of what was going on, but, more importantly, an emotional attachment to Dr. R and his team.  Somehow she just finally 'knows' they are there for her, will always help her, and love her. (Something Brian and I have known for a long time.)

I'm not sure what Megs will do not seeing Dr. R for 9 months! But we are very "happy" for the reasons behind that!  We had a great run from last October to this last February and I'm hopeful we can go a lot longer this time without another hospital stay or more setbacks developing.  We are so thankful again for the ingenuity of Dr. R and his team to step back, look at the big picture, and find the solution we have now that has allowed Meagan to blossom again.  And, of course, get in to trouble again too.  As an almost 3 year old should.......


  1. Everytime you post a video I marvel at how incredibly far she has progressed over this last year. I'm glad Meagan did well at her appointment and has such a good relationship with her team. We have lucked at as well with a great NSG team. Its nice to have dr's that know your child on sight (well, maybe its not great but you know what I mean). Even better when the team knows the parents well enough to trush their judgement as well.

    1. That is the most valuable thing - docs that are not only good but trust you as the mother. It really makes a difference in the care.