Charlie - The Beginning of our Journey

This is taken from Charlie's CaringBridge page on July 12, 2014 at 9:50 P.M. 

I am not really sure where to begin as I never dreamed I would have to create a CaringBridge site for one of my children.  This is probably one of the hardest things I have ever experienced but I know God's plan is bigger than me and I know his unconditional love for Charlie has no end.  These two things are the absolute ONLY things that provide John and I any comfort as we learn how to walk through these very uncharted waters.      

Here is Charlie's story (the short version) from the beginning.  Monday morning, July 7th, Charlie woke up after sleeping through one of his normal feedings.  It was a little alarming because when I leaned over to pick him up out of the bassinet he was really irritable.  Any touch made him scream (instead of his normal cry) and immediately I knew something was not right.   I tried several things to make him comfortable.  He had a broken clavicle when he was born so I kind of thought that may be what was upsetting him but it just didn't match up because he had never acted like that before that night.  After a couple hours of trying to console him with no success I took his temperature.  His temperature was 99.4 under his arm.  I immediately called our pediatrician and took him into his office 30 minutes later.  When we arrived Dr. Pappas saw him in the hallway and heard him grunting a little when he was breathing.  He almost immediately said, "He needs to go to Children's."  Quickly, they checked his weight, height, head circumference, and vitals before rushing me out of the office to Children's Hospital ER.  We arrived at Children's where Dr. Pappas had called ahead and  they took us back immediately. 

This part of the story was like a whirlwind.  We started in the front of the ER where they took his vitals again.  The nurses seemed calm and took him into another room to get more information and to see a doctor.  Several people came in and out of this room asking questions and hooking him up to machines that would check his oxygen levels among other things.  The part I remember the most was the oxygen reader on his little foot.  They kept saying it wasn't working.  At one point Charlie cried/screamed really loud when he was being moved and suddenly no sounds were coming out of his mouth.  The nurse looked over and realized he was not breathing.  He asked me to carry him into another room where he took him to a bed and over 20 doctors rushed in and started assessing Charlie.  I stood to the side and watched as they almost immediately intubated him and started two IVs; one in his hand and one in his foot.  The doctors were talking over each other and ordering tests and screens to find out what had made him stop breathing.  As soon as I could I called John, who was at home with the twins, and he came quickly to the ER.  We stood in the ER helpless waiting for some news about what was happening and why.  

Once Charlie was stable they took him to the Pediatric ICU where we started this journey with doctors and nurses caring for Charlie and looking for answers with us.  They ordered more tests, got results, and searched for a reason all this was happening.  They said they thought it was an infection and once they learned what the infection was they would be able to provide us with some answers.  Regardless of what it was because of Charlie's age and size they started antiviral medication and antibiotics to help him get past the infection they assumed it was.  On Tuesday we learned that it was Para Influenza type 3.   A common infection for this time of year that causes "croupe" in older kids.  Once we learned this we thought we were on our way out the door. Finish up the medicine, get extubated, and leave!  It didn't happen that way.  On Wednesday morning, one of the nurses said she thought he was having seizures because he was "posturing" or arching his back and raising his arm throughout the night.  During rounds that morning they discussed getting neurology involved to find out for sure whether or not he was in fact having seizures.  Due to this new concern we continued to wait to extubate. They put an EEG machine in our room and monitored his brain activity.  It didn't take long for them to see he was having a lot of short seizures.  They started a medication called Phenobarital.  Charlie responded well to the medicine and it stopped his seizures.  The doctors said that was a good sign.  We waitied yet again to extubate because they wanted to get an MRI of his brain and he needed to be completely still in order to get a good scan.  

On Friday after his MRI we received the news we thought could never be true.  He has severe brain damage.  The doctor told us that both sides of his brain has sustained severe injury and were swelling.  They explained that the damage was not reversible, but other than that we did not get a lot of information. In that moment the plan changed for Charlie.  We would keep him intubated until someone from the Genetics Team at Children's could come talk to us and develop a plan for tests they needed to run to determine whether or not it was in fact a genetic disorder or simply a lack of oxygen to his brain.  This is where we are tonight.  We are waiting on genetic testing but plan to extubate tomorrow. Charlie did have two pressure support trials today to test whether or not he would breath on his own without the vent.  He passed both trials.  It will be a big day as we begin to learn about some of the things Charlie will be able to do without support.  The picture is one of Charlie with a lot less machines (finally).  He was alert and very feisty tonight.  I read a book to him called, "I love you, Stinky Face"  I think he really liked this book.  I told him it could be our special book.  I told him I would love him no matter what happened.  Once we finished reading the book and looking at every picture we prayed.  Here are our prayers.        
  
Prayers: 
1. God would completely heal Charlie and perform a miracle on his little body.
2. God would make the next MRI completely clear and free of the damage to his brain.
3. God would keep Charlie comfortable.
4. God would allow Charlie to breathe normally without the vent tomorrow when they extubate.