Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Wednesday, October 1, 2014

One week later....

So here we sit....Nate on the plastic couch and me on the plastic chair, staring at a peaceful, sleeping Xavier.  He has a feeding tube and CPAP nasal cannula in his nose.  Two cheats tubes coming from his chest.  6 thin little wires coming through his skin.  He has an IV in both legs, and more leads then I can count.  He has his spider man sheets on his bed and his room is filled with super hero balloons.  

Today is one week post fontan.  Ideally we would be toward the end of this very long journey.  I should be updating with mile stones like:  he walked to the playroom today or he got his chest tubes out.  Instead my updates consist of me asking for prayers and talking about his neurological progress for the day, which moves at a snails pace.  

Last Thursday morning Xavier suffered an internal bleed leading to cardiac arrest.  He had emergent bedside surgery and suffered from lack of oxygen.  He has been struggling to survive but creeps forward a bit each day.  We are playing a waiting game and all anyone can tell us about his recovery is that it will take TIME...a whole lot of TIME.  He has some good things going for him.  His age for one because his brain is immature and still has a lot of growing to do he has the ability to repair some of the damage and also find new pathways around the damage (really really amazing), his developmental delays also are to his advantage because his brain was more immature then a normally developing three year old.  His body temperature was lower then normal at the time of the arrest which is also excellent for his brain.

Those moments, when I realized that something  was wrong with him are burned into my brain.  I keep replaying what I could have done different, how I could have stopped this from happening.  With all this time to just sit her and ponder, sit here and pray I have decided that this was something that was out of my control.  Just like his heart to begin with nothing I can do or say can change his path.  So I am trying my best to stand tall on my faith and walk with God through this one.  I know The Lord is round about Xavier.  Carrying him out of the darkness and into the light....I believe that his healing has already happened, and now we must wait for it to manifest itself.  

We have been told that there is no way of knowing what parts of his brain are damaged because he can't have an MRI due to his pacemaker.  The CT scan showed no swelling, very little bleeding and he had very little seizure activity that was stopped with medicine.  He can open his eyes but struggles to focus, he responds to pain and vocalizes when he is mad.  He gets upset when he needs a new diaper, he is peeing and pooping and finally today is starting a wake, sleep cycle.  All of these things are each day we look for just the smallest improvement.  We are keeping his room dark and quiet, playing him relaxing music and trying not to touch him to much.  We find ourselves in our own special type of purgatory.  The highs feel incredible high and the lows feel too low.  However, we find comfort in each other, in Elliott, our families, our friends, the heart community, our religious community and Xavier's online community that has grown to close to 800 followers.  We have people praying from all over the world, representing different religions and beliefs.  We have people coming to pray over him, people doing healing reiki, the worlds best cardiac doctors and nurses planning, plotting and rerouting the path we must take.  We have by far the worlds best pediatric cardiac neurologist working with him.   We know it is a miracle that he is alive, it defies medicine and amazes the staff here.  We know that God is currently working a miracle on his brain.  He is amazing every single person on this floor.  He is loved here, he is taken care of here..this is the place where he will get a second chance at life.

Xavier has a purpose, something that is way bigger then me.  I just happen to have the privilege of being the one who gets the front row seat to the show.  What an honor to be his mommy, to get to walk this journey with him.  What a humbling experience to have this miracle bestowed upon me.  

When I was sitting with the social worker and the Chaplin, in a small conference room on the cardiac floor, waiting to hear the outcome of his "event" I prepared myself for his time on Earth to be over.  I told God that if he allowed me to keep my baby I would nurture him and help him to fulfill his purpose under heaven.  Here we are a week later and he is alive and talk of recovery has begun.  Xavier's neurological recovery will be long...years for sure.  But I know with time and therapy and God he will do amazing things!!!