Two Weeks Post-Op

It is hard to believe we are already 2 weeks post-op decompression surgery on Baby Girl!

She went back to school on Wednesday and has been doing amazing.  Her friends were all so glad to see her and she missed everyone.  So far, we have only had some soreness in the incision site after a long day.  Plus the itching.  Oh the itching of the incision site!  Lol   She is ready to wash her hair with something besides the baby shampoo they recommended.

It certainly has been a difficult time keeping her slowed down during this recovery time.  Because her headache is finally gone, she feels like a new person.  So, she has been trying to be a typical 13 year-old.  She went trick-or-treating with her younger cousins on Friday, and had a blast.  She was caught running from house to house and had to be reminded to slow down a bit.  Our biggest risk right now is falling and hurting her head since she has not finished healing yet.  Plus, their grade went ice skating on Friday and she went along and hung out with everyone instead of skating.

We have our followup with our surgeon on Friday of this week to see how she is recovering.  I know that he will be further amazed by how well she is doing.  We have 3 month MRI down the road to give them a base line for future, but otherwise, she will be totally released to grow up and be herself.  No contact sports until the MRI, but that is about all.

We are thankful to be so blessed right now.

Surgeon Visit

We met with the surgeon this week.  So many questions were answered.  Because of Baby Girl's age, he thinks she should recover pretty quickly.  They will open the skull about 1.5 inches and shave off the back of the first vertebrae.    If the brain is "happy" at that point, he will then close her up.  If it isn't "happy", then he will do the patch of the dura.  This will mean he has to put kind of an extender patch on the covering of the brain to give the brain more room to float around.  Scary stuff, but I must remember to trust in his skills.

Baby Girl is more worried about how much hair he will have to shave.  Oh my!  To be only concerned about that!  We've decided to wait until after her birthday, so she won't be stuck at home recovering or laid up at the hospital.  Recovery time looks like about 2 weeks down-time.  No swimming, no school.  Just taking it easy and handling the pain.  After that, released to go back to school, but no contact sports.  After 3 months, she can resume more regular life.  We will have to make sure she is fully healed before she does anything too extreme.

So, by the time spring sports come around, Baby Girl should be able to participate as usual.

What is Chiari Malformation? We just were diagnosed..

In February 2014, my daughter had an MRI for very bad headaches.  A few days later, her doctor called me at home after hours to tell me the news.  My daughter was diagnosed with Chiari Malformation.  What on earth is that?  What does it mean?   He said we had to go see a specialist 2 hours away and he would have us referred there.  He hung up the phone.  I'm now in a panic, quickly researching this mystery "illness" that has interrupted our lives.

Fast forward 2 weeks, no referral yet.  I finally call, I get some answers and an appointment set up.  In the meantime, I've done so much research, I'm almost throwing up from stress.  My Baby Girl, only 12, has some crazy stuff going on in her head.  How do I tell her she will probably end up with MAJOR surgery, unknown results, possibly more surgery down the line?

First we see a pediatric headache specialist who knows we've been diagnosed with the Chiari.  He thinks we may be able to relieve some of the pain she constantly has, with drugs and diet changes.  As a mom, I'm hoping this is the answer to my prayers.  We wait and see the pediatric neurosurgeon also while we are there, since it is such a long drive from home.  Mr. Surgeon only states "surgery".  I totally just want to curl up into a ball and cry.  I have to be strong.  The only good thing is the doctor has a thick accent and she doesn't hear all his comments.

Chiari is something new for us.  It's scary.  Baby Girl's brain is too big for her skull, pushing down in the back, pressing against her spinal cord.  This causes her spinal fluid to back-up in her head, causing pressure and pain.  The decompression surgery is supposed to open the skull up, allowing the spinal fluid to move more easily.  Cutting out part of the skull.  On my baby.  I'm so scared right now but must remain strong for her.  We head to the surgeon on Friday, to set up everything.  I hope to wait a few more weeks, until after her 13th birthday.