Our $349,000 Day

As many of you know I received a call from the billing department of the hospital telling me I still owed money from a bill from fateful day of October 31st.  The day Nick went into cardiac arrest at our home and the day that shifted my family and all who are connected to us.

The clerk told me how much I owed and I asked what the total bill was and she said $349,000 and some change.  I stop her and say, “oh, you are adding all the days that we stayed at Holy Family too correct?”

She says No.  This bill is just from one day.

Wow….one day.  Thank you Mather Lifeway’s for employing me and allowing us to have insurance. This phone call would of been quite different if I never got that job.

You do know me well enough to know that I don’t put price tags on lives that of my sons or anyone in my family.  Lives are precious and really have no price tag it is more about the folks that aren’t blessed to be where I am in the moment.  I could lead this blog post into a whole political diatribe, but I won’t.  It is more about what I have witnessed as we move through these waters.

I have watched families pack their bags up early from the hospital because their insurance company has decided that their loved one has been treated enough.  I have seen families beg for various treatments because they know it might help but have been refused because its isn’t part of their insurance plan. We ourselves are trying to get a hospital bed that is better for Nick than what is normally given and our doctors had to write letters after letters basically explaining why someone with a traumatic brain injury deserves a bed that will help him not get bed sores.

Please know that our case managers root for us, however people in cubicles, who work for insurance companies that don’t even know our names make all the choices of the health and fate of our loved ones.  

As we near the end of our journey at RIC I am confident in my abilities and Perry’s abilities to help our son.  I have enough human resources to make things happen and will try alternative ways of healing.  I have been proactive in Nick’s recovery, and in part because I know there is more than one path to healing and I have witnessed miracles.  I am grateful that I have always attended to this problem with eyes wide open and I with a humble heart.  It is never lost on me that my family is held up and supported by loving human beings of which we know we can never fully repay and we know that all of you are doing so with open hearts as well.

Nick is ready to leave the rehab center.  Perry and I can feel it.  I think he needs to integrate what he has learned before he can move forward.  I also think he needs to know that he has his home still.  His room.  His friends.  His music and the smells of his world.  I can’t wait until he is able to eat again.  His friends parents have all kinds of dishes they want to bring over.  Nick has the greatest group of friends from many different cultures.  He has been promised rice soup and pad thai and bulgogi and a handful of others I don’t know how to pronounce.

Nick is in the middle of something called “Serial Casting” 

http://www.rainbowrehab.com/RainbowVisions/article_downloads/articles/art-fa12-therapy_serialcasting.pdf

The cast is currently on his hand.  When it was recently taken off  to have another one fitted his had was open and his fingers were no longer curled.  It was quite amazing to witness.  Now he will wear one more on one hand to get it to neutral and then we will begin the other hand.  I keep telling Nick we are doing it so he can play guitar once again.

Before the casting Nick had botox injections in his arms to release the muscles from spasticity. https://lifecenter.ric.org/index.php?tray=content&tid=top102&cid=2289

Perry and I are buying a van for Nick so we can get around.

http://www.mobilityworks.com/Commercial/commercial-transit-connect.php


We have had construction guys come to the house to plan out demolition of the first floor bathroom and the ramps that need to go in. 

We are buying rehab tables and shower chairs and all the supplies we need to take care of Nick.

He was also fitted for a wheel chair similar to this but custom built for his body.

http://www.sunrisemedical.com/manual-wheelchairs/quickie/tilt-in-space-wheelchairs/iris


Yes, we have been quite busy.

Let me also say that Perry and I are very proud of our daughter, Nick’s twin, Emily.  She has been amazing through all of this.  After, seeing her brother struggle so much she has ramped up her own life a bit.  She has always been goal oriented and moving forward, but now she is really doing some deep inner work which is beautiful to watch.  Perry and I are always in awe with how Emily moves through her life she is one of a kind.

Keep holding all of us in your prayers, good thoughts, and cheers when you clink glasses of wine.

We appreciate all of it.