Stress, Sports, Counting It Down

We are on the count-down until surgery.  Trying to plan who is taking care of our other teen (Brother Bear) that week, making sure he makes it to and from school and gets food to eat.  My husband wants to be at the hospital just as bad as I do, but I'll be the one glued to Baby Girl's side.  Add in 2 dogs and 2 cats that will need to be fed, walked, watered, and loved on, my hubby will have his hands full!

How do we decide what to pack for her?  I want to make sure I've got snacks and drinks handy for me so I do not have to leave her side if at all possible.  I know she will not want to pull clothing over her head that is tight after surgery, but she owns nothing comfy that buttons up.  Uggggg.  I'm worried about the drive home with her in the car.  Will the motion of travel make her sick to her stomach? What about all the bumps in the road?  Can I just wrap her in a plastic bubble?  Do we pack 100 pillows in the car to cushion her ride home?

Can you tell I'm stressed out with worry?  I've been trying to make sure to shower Brother Bear with love and attention.  It is hard to make sure he is not left out during this whole process.  His biggest worry is that something will happen to her and he will not have anyone to fight with.  I think that is his way of dealing with his fear about the upcoming surgery.

We postponed this surgery until after volleyball season is over.  By doing so, she will at least get to play this year.  Nobody knows what will happen after this.  Will she be the same?  Will she have any lasting affects?

The more we look into this strange affliction, the more we realize some of the things she has going on could be tied to her Chiari.  Baby Girl has trouble swallowing sometimes, or gets choked on small amounts of food or liquids.     Chiari.    Or when she eats, even small amounts, her stomach then hurts.    Chiari.    Tingling fingers, feet, and scalp?    Chiari      These are only a few symptoms that she has had that can be blamed on the Chiari.

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.