Tuesday, January 14, 2014

Living a Life of Uncertainty

It's been five years since my husband and I heard the words Normal Pressure Hydrocephalus.  And our quiet life that we had planned went out the window.  Hydrocephalus basically means "water on the brain."  There are basically two types of hydrocephalus, which are: congenital and acquired.  Congenital means it is present at birth, and acquired means just has been acquired either through injury or illness. 

When I first moved in with Mike, he had headaches EVERY. SINGLE. DAY.  They were so bad that he was taking an unusually large amount of aspirin.  He had started getting the headaches while he was in Iraq.  I insisted he go to the doctor for these headaches, and that's when the doctor sent him for a MRI, and it was discovered.

During all this time, Mike was forgetting a lot of things, he was falling a lot, and very unsteady on his feet.  We believe that all the concussions that he was suffering in Iraq from the constant bombings is the reason he has the hydrocephalus.  And because it took four (yes, FOUR) years for me to make him go to the doctor, he has suffered some brain damage from this pressure on his brain.  

Things kinda went fast forward after we received the diagnosis of Normal Pressure Hydrocephalus.  He was scheduled for his first brain surgery on April 15, 2010.  This was for the placement of a VP shunt, to drain the fluid from his brain, since the ventricles that were supposed to do that were completely shut.  

The first shunt got infected.  Mike never recovered from that surgery, and was very ill during that time.  Within two weeks, he could barely get out of bed.  When we ended up back at the VA hospital, the doctors ran blood tests, and they all came back normal.  The doctor decided to admit him because he could tell there was something wrong.  After two days in the hospital, the blood tests FINALLY showed the infection.  Mike was scheduled for surgery the next day to remove the shunt.  

This started our roller coaster ride.  After the shunt was removed, the fluid was building up in his brain again.  But, the doctors could not insert another shunt until AFTER he was free of the infection.  And they wanted to make sure, so it was 6 months before they inserted another shunt.  We were lucky!  Yes, LUCKY.  Mike has Normal Pressure Hydrocephalus, which means that he was able to be discharged from the hospital during this time.  If it was not Normal Pressure Hydrocephalus, they would have had to keep him in the hospital during the time that he was treated for the infection, and he would have had a very long hospital stay. As it was, Monster pretty much grew up in the corridors of the VA hospital in Houston during this time.  

After the infection was gone, and they inserted the second shunt, things got back to our new normal.  Mike has the days of being "wobbly" and he still has the constant headaches.  The damage was done though to his brain.  We will always have a hard time with him learning new things.  He will ALWAYS carry the diagnosis of "Traumatic Brain Injury" and he will always have the brain damage.  

We live the roller coaster life of hydrocephalus.  Every time he gets sick, I worry if it's a shunt malfunction.  When he has a headache worse than normal, does that mean that the shunt isn't draining as well.  He will always have the bump on his head where the valve for the shunt is.  He will always have the hole in the back of his skull from the first shunt.  

This isn't meant to be a "poor me" post, because we're incredibly lucky with our lives.  We have each other, and we have Monster.  This is meant to be an "eye opener" for those that think that hydrocephalus is no big deal, because it is a big deal.  This is the first of many posts of what it is like to live with someone that is "special needs", because it's not just kids that are special needs.  We live a "special needs" life, and we live it to the fullest.