Problem 1 of 999

 March 27, 2023

I will never forget arriving at Shepherd Center in Atlanta with my 17year old son.  I really don't think there are enough words to describe those initial days in their ICU.  Julian is very sick, has pneumonia, chest tubes, trach, ventilator, foley, can't move anything below his neck, his mood was at an all time low, expressing desires to not live.   As a mom, this is the most devastating place to be.  He was my sweet baby that slept with me until he was 5, loved his family, never got off the phone or left without telling me he loved me.  I really wanted to crawl in the corner and cry, but instead I had to put on a brave face and tell him we were going to be ok.  I was talking with a co worker at work the other day who also has had difficult times with her child.  Not sure if it's a nurse thing, mom thing, or what but it's like there is a switch that can be turned on and off for our emotions.   When I arrived to Julian's accident, I was a mess.  I was crying in the middle of the road while being comforted by a policer officer and trying to get Chris to come to me.  As soon as they were bringing Julian to the ambulance, it was like I went into nurse mode.  We are used to dealing with emergencies in our job but it is different when it is your child, but I was calm for Julian.  I knew the diagnosis in the first sentence he spoke so I prepared myself the whole way to the hospital. As long as I was in Julian's presence I didn't cry or show my inner turmoil.  (That was for the waiting room, where I'm sure I scared residents, and even places like the pool locker room at Shepherd because no one was ever there). My friend was the same, she handled the emergency with the calmness we use to be good at our job.  Sometimes it does get exhausting keeping up the calmness when you really just want to have an epic breakdown.  

Lately, my desire to have an epic breakdown is due to all the shit we have been dealt with lately.  I feel like I wake up everyday ready to fight for Julian.  You would think I wouldn't be the only one to fight for him.  It is like adding trauma on top of trauma on a daily basis.  I just can't even make some of it up, and I am a smart, educated, medical person that has worked in medical settings for 23 years.  

While we were in ICU, they brought Julian in a wheelchair.  It was one of the first true concrete things that proved this was not a bad nightmare and this was real.  I wanted to send it away and hope that he wasn't going to need it but unfortunately reality is a bitch.  Seeing your child in a wheelchair is heartbreaking.  Trying to fight for your child to get a wheelchair with a vendor is crazy.  With SCI, buying a wheelchair isn't something you ever expected buying, like a car.  You don't shop around, read reviews and look at the options.  You are told which one to order from and they help get the things that your child will need to operate.  All may know we have been trying to either modify or get a new wheelchair since August last year so Julian can hand drive instead of using the sip and puff.  Throw another curve into the situation.  With very few spinal cord injury rehab facilities, a large amount of patients are being treated in states that they do not live.  We met with the therapist and vendor for our wheelchair that we have which is National Seating and Mobility in September in Kentucky.  A plan was put in place for is needs.  The wrench in the system is that we are in Kentucky and Julian's secondary insurance is in South Carolina.  Going into this, I knew it would be a lengthy process.  I was patient and was letting it play out.  In January, I called to follow up on the status and to find out that nothing had been done because the Kentucky branch can not file the South Carolina insurance, and likely did not want to deal with a matter they would not get paid on.  Instead of calling me and helping me find a solution, our chart just sat on a desk in Kentucky.  I of course was not happy.  It is sad that no one wants to do the right thing for one of the most vulerable populations.  A wheelchair is their lifeline.  Without it, they are helpless.  I can't imagine an employee that could be lifesavers for these patients not wanting to do their job to the best of their ability.  Who would not want to help an 18 year old kid that tragically had his life turned upside down.  Personally, it may be time for people to move on if this is the work ethic they use daily.  Finally, we were directed to the South Carolina branch.  I was hopeful that they would finally help Julian.  A different plan was put in place from the therapist and the rep in  south Carolina for the same company at Nationl Seating and Mobility.  The therapist in Kentucky let me know the plan and again we have gone months without communication from NSM.  I also called again to follow up to find out that once again it has been stalled because apparently the rep is missing documentation but did not inform myself or Julian.  People just don't care about other people anymore.  It really is a selfish world we live in.  I wish I could inform any other people in my position about this company.  Tell them they have options, but with SCI, you are just in survival mode and trust others to lead. you in the right direction.  Their lack of compassion for doing a job well done is evident.  So now, Julian has waited over 6 months and it still isn't ordered.  

Again, this is just 1 issue on top of daily problems that this population deal with.  I feel sorry for the less fortunate that don't have an advocate (sure they would call me something else) to help them navigate this process.  

We need to do bette taking care of people that truly need our help.

Picture:  The first time Julian was placed in the wheelchair and my heart broke a little more that day.