1000 miles begins with a single step.

Hey team Nigro I am checking in because I have been deep in the rehab world and I have been lax on giving you updates!  I will have more to say at a later date, but I just wanted to give you a medical update even though most of the time I am thinking about the spiritual implications of Nick’s journey and I want to write about every nuance that I come across.

One day after arriving at the Rehabilitation Institute Nick was diagnosed  pneumonia which shot his temperature to 103.  I think it was brewing for quite a while in the lower regions of his lungs, but who the heck knows we just needed to nip it in the bud.  He was put on three different antibiotics until they figured out the strain of bacteria which was reeking havoc in his body.  

This was all well and good however they couldn’t find a vein in his arm to place and IV so they needed to send Nick to Northwestern hospital via ambulance which is crazy since Northwestern is directly across the street.  Does that seem insane to anyone else but me?  He also spent 3 hours there to get two different IV’s placed in his arms. A day later a team came in to give Nick a special IV called a PIcc line and it has made all the drugs and blood draws for Nick so much easier.

One day on mega antibiotics did something amazing.  It stopped his fevers, his massive sweating , his brain storms and he become more aware of his surroundings which sadly triggered more crying and deep emotions.  So hard to witness but a very good sign that his brain is waking up.

Nick has speech therapy, Occupational therapy and Physical Therapy every day.  He is learning to do small things like swallow consistently and hold his head up and one of the biggest things his speech team is working on is to find a way that Nick can communicate with us.  There are actual teams of people who are trained in alternate communication techniques which may be the breakthrough we need to understand what Nick needs and wants.

He will be participating on the side with pet therapy, music therapy and art therapy trying to unlock his creative side which he had so prominently before the West Nile Virus took over.  Nick responds to music which is played during therapy sessions and I brought his guitar the hospital in case anyone who comes in to see him can feel free to play.

Perry reads to Nick every night.  They are reading The Lord of the Rings and somedays I just sit and witness the beauty in watching a father read to his struggling son.  Emily still sends narrated stories which Nick listens to and I found a video of Nick in high school telling Emily his favorite book was “Everything Ravaged Everything Burned” so I purchased it and read it to him on and off when we have a break here and there.

Nick is being fitted for splints on his arms, hands and feet because he still has good range of motion and they want to keep it for when he attempts to walk again.  Tomorrow his physical therapist is going to put Nick on a tilt table which is something that allows Nick to feel how it is in an upright position.  They have to be careful of Nicks blood pressure because of his traumatic brain injury.  Apparently, folks with TBI can have their blood pressures drop dangerously low when learning to stand again.

Nick finally had a real shower on Saturday which was heaven for him.  He has had bed baths since Halloween and I am sure the water felt amazing on him because afterwards he slept right through the night.

Nick had his tracheostomy changed today which is the first step to not having one at all.  The smaller trach’s will encourage his vocalizing.  Nick has been using his voice more in sighs and moans and yawns.  It is strange to become aware of all types of ways we vocalize and how we take all of it for granted.

Our first family meeting is on the 28th where we meet with all the doctors and the therapy team and we hear about the plan for Nick.   I am nervous about this.  Nick is being evaluated in two week increments which makes my stomach turn over if truth be told.  It is all about insurance measurements and less about Nick and his journey and his timing, but you know me I will fight for my son.  I have already reached out to a home health care team which by the beautiful grace of god is run by one of Emily’s best childhood friends parents. This gives me peace of mind if at the last minute we are kicked out of the hospital.  It looks like the 3 major things we will need to do  in our home to accommodate Nick are to change the downstairs bathroom, two doorways need to be widened and a ramp needs to be added in front so Nick can enter our home again.

Perry just texted me and told me that a nurse came in and picked up Nick’s guitar and started playing Pink Floyd’s “Wish You Were Here” and singing it to Nick.  Now this is nice all in itself, but it has tremendous meaning to me personally.  It is one of my childhood favorite songs.  It was the song my friend Lane Daniel used to sing with me when we were hanging out together. Lane died young  and afterwards any time our friends heard this particular song we would sing loudly and raise our glasses in memory of one beautiful soul.

Lastly, Emily is home.  She arrived early yesterday and I am thrilled to have her here.  To be able to kiss her and talk to her about what is happening in her life is a blessed gift.  She saw Nick in his physical therapy session today and was asked to help out.  When Nick heard her voice his eyes opened wide and he actually turned his head towards her which at that moment took all my might not to bust out in tears.

Hope you all are seeing the magic in our everyday lives as I have seen during these past 7 weeks.

May God bless you and keep you.