Saturday, August 20, 2011

Our World Just keeps Spinning

     If only I could see the future just a little.....July 28th, 2011.  Noah came into our bedroom kinda in a panic at 8:30am saying " Mommy, wake up you need to come out here ".  Did I know what was happening?  In the back of my head...YES.  This would be the second time my body needed to catch up with my brain REALLY fast.  As I turned the corner by our basement door, the first thing I see is Aiden on the floor, Instantly I know what is worst fear AGAIN.  I yell for Robbie and tell Noah " he is having a seizure, call 911 ".  Noah hands me the phone as Robbie is coming out of our room, knowing Exactly what is happening before he even sees it.  You know, even though this has happened once before I am sitting here typing this "Crying".  I don't think until now I have really cryed, I have been going full speed ahead.  I needed to write this when nobody is around and all I have is silence behind me, and that is what I have right now.  I don't think I can ever get used to seeing what we see when he has a seizure.  Back to that morning.....I tell the paramedic on the phone what is going on and that we do have Diastat (  that is something we would inject rectally ) to make the seizure stop.  We did not use it due to being scared....till this day I wish we would have. IF it were to ever happen again..we would use it, especially now because we know the longer he has the seizure the more likely it could cause Brain damage.  So do we feel like shit for not doing it..YES we do, but luckily he does not have damage.  Thank GOD!!
     After I got off the phone with them I have Noah call their Grammy and tell her what is happening, Ina gets to our house before the ambulance and calls Richard.  When the Paramedics get to our house they look at Aiden and tell us they are going to work on him in the ambulance.  One of them pick Aiden up and carry him out.  That leaves us pacing the house not knowing what to do.  I start to get things together for the hospital.  I realize i can't just sit here and pace I need to do something...Oh maybe brush my teeth and hair.  I felt stupid when Robbie walked into the bathroom and here is Me straightening my bangs with tears in my eyes and I say " I had to do something, I can't just stand here ".  He touched the small of my back and said " I know, I understand ". Of course that brought tears to my eyes then and now.  It's those simple touches that mean he knows exactly what I am thinking.
     I called my sister Kristin to let her know what is happening, as I am explaining, a Paramedic Finally comes in to let us know we are about to leave.  I hung up with her and headed out.  I wish I could say that they got the seizure to stop, but they didn't.  It took 4 doses of Versaid and something nasal to get it to at least not be so violent, that was when we just pulled up to St. Lukes that it calmed a bit.  What is Crazy is that we were in the same room with the same nurses as the first time.  Robbie, Noah, Grammy and Papa all show up at the same time.  Aiden kept moaning and groaning, but was not talking.  as Richard was leaving I look over at Aiden as he starts to throw up in his oxygen mask.  The nurse suctioned it out as I wiped his mouth.  Still he kept the nurse came in and said " he must be in pain, I am gonna give him some Morphine ".  should I have questioned her..YES, but you know what I don't know what he is feeling.  The Morphine probably knocked him out for about 10 minutes and that is it.  The Ambulance from St. V's showed up shortly after.  St. Lukes had given Aiden some scrub pants because same as last time he had peed and we are not about to try and change him while he is having a seizure.  As they are switching him to their bed he starts to kinda get scared.  With all that medicine in him, how can you blame him.  I got to ride in the back with him this time.  Half way their he felt like he had to poopy, he didn't, but he did pee.  The Paramedic..Scott was his name, was sooo nice.  Even  though they didn't have any scrub pants that would fit Aiden in the ambulance, he explained to Aiden that he will make sure to keep him covered.  Scott gave Aiden a stuffed bear with a flying suit on for being so good and brave.  We named to bear Scott :)  When we got to St. V's, they took us straight to the I.C.U.  I let them know as soon as we got their that he needed some scrub took them 2 hours to get them :( I am figuring the reason for that is......Aiden turned into The HULK....Morphine is NOT his friend.  Anyone that has had the pleasure..knows Aiden Loves to give Check-ups.  He was NOT having it this day.  He  stood STRAIGHT up on that bed..penis and butt out for everyone to see, all because the nurse wanted to listen to his heart.  The nurse looked at me, saw me trying to reason with him and said " is this normal for him? " Uhhhh NO!
      Erin, I hope you know just how sorry I am that you had to find out what happened thru facebook.  NEVER did I want that to happen... this I will ALWAYS be sorry for.  Julie, Thank you so so much for dropping everything and coming to be their with us...Ina thank you for calling her:) As the day went on Aiden of course got better as the Morphine wore off...the Nurse fell in love with him  <3 .  Doctors came in and did not understand why he was on Trileptal.  We had been weening him off since July 6th, 2011, due to 3 EEG's coming back normal.  July 27th was the first day on the dose 1ml in the Am and 1ml in the Pm.  Him having a seizure was his body SCREAMING....NO not ready to be off Trileptal.  The Doctors say " Oh..they usually give a person one free seizure before meds ".  Ummmm have you looked at his chart, his first seizure lasted 25 minutes!!!  The one Doctor said " well I'm not a neurologist "   Ya think!!!!  Then they wondered why Trileptal and proceeded to explain about the 3 new meds.  ALL 3 cause behavior problems.  HELLO!! he has Sensory, that alone causes behavior problems.  Later Robbie asked our neurologist's nurse and she called to ask about the Trileptal and guess what he said....I chose Trileptal because all the other ones cause behavior problems....Thank you Dr. Haseeb for actually listening to parents :)
     We did stay the night at the hospital..they wanted to keep an eye on him once his medicine was bumped back up to were it should be.  Believe it or not, he likes to stay :)  Friday morning, Dr. Haseeb came in to see him.  Asked me about the Diastat and explained a bit more, now I am not so scared to use it.  He then looks at me and says " Aiden has Epilepsy ".  Did I want to cry...yes I did, but at least we have some answers.  He will be on Trileptal for at least the next two years.  That is good with us...we really don't enjoy seeing that.  It breaks your heart to not be able to do anything for your baby.  When it was time to go home, the nurse had to take out Aiden's I.V. and unwrap a bunch of tape off his hairy little arm.  This took Me, the nurse and Robbie to hold him.  She was AWESOME, she used this wet swab to wipe on his arm, so it didn't rip out any hair.  As I am talking to him I notice he is getting pretty pale.  When she was done he said " I feel like I am gonna throw up " Guess what...he did.  He got himself so worked up, the nurse stayed until his lips started to get pink again.  Poor Buddy.  After we left, we took the boys to Red Robin, poor Aiden looked so drained.  When we got home me and Aiden went and took a much needed nap :)
     We Truly could not make it thru all this if it wasn't for ALL of our family and friends.  When I got on facebook and saw all the love and prayers that everyone was sending brought tears to my eyes.  Thank you all so much from the bottom of our hearts.  Also, knowing that Noah has seen this both times and seeing how he has handled it, makes me love him even more and that Aiden could not have a better brother.  I know still to this day he feels guilt for not waking up sooner.  Aiden had kicked him a couple times before waking him up.  All 3 of us have some guilt...we should have known that maybe something could have happened with him being so low on his meds, but how would we possibly know that.  I hope the guilt goes from Noah's heart, I don't want that weighing on him.  He is such an emotional being and that I love the most.  Thank you for being you Noah,  I love you!  Aiden, Thank you for Always bringing a smile to our faces...I love you!  Robbie, you know me inside and out, I couldn't ask for a better husband...I love you more than you will ever know <3