This morning I walked into Nicks room like I do every morning to check on him and found Nick staring ahead mouth wide open, but with no vocalization and his body was rigid like a board just like the picture “The Scream” by Edvard Munch.
I quickly jumped into action massaging his legs his arms his feet anything to get him comfortable, but nothing worked. I then grabbed a sponge with a little water to see if I could get him to drink which would at least got him to close his mouth for a minute, but he went right back to his silent scream.
It was awful.
I called Perry and Perry did what he always does with Nick and he began to speak in the most quiet tones and then he put his forehead on Nicks forehead and stroked his hair asking him what was wrong in those tender tones. Nick locked eyes on Perry’s and slowly like one would unravel a sweater by tugging a thread Nick released whatever what was holding him in panic.
It was insanely moving.
I haven’t written in quite some time. Not because everything has been scream worthy ,but more that we have been working extremely hard and the highs have been really high and the lows have been really low. I just have so much to say about it that I paralyzed myself from writing anything.
I will tell you the high points.
Nick finally received a bed that we have been asking for since January. Because of the work of his former physical therapist and his doctors and after writing letters and jumping through hoops. I received a phone call that went like this.
“Hello, Mrs. Nigro? This is Linda from Hill-Rom and I am pleased to tell you that the bed you requested was approved by your insurance company.” (This bed costs $18,000) She went on to tell me how unusual it was and rare to have such a request granted.
We also solved our transportation issue in a more reasonable way since we don’t have $40,000 for a handicap accessible van just lying around. There is a company called Access Unlimited that creates custom made parts to fit in your current vehicle which essentially creates a lift to transport your loved one from their wheelchair into the car. Check it out here:
A side note and a thank you to Chris the guy that built our ramps. Chris was a stand in for Perry when I needed to get trained virtually on how to use the equipment. He was an angel because of his handy dandy ways he knew what the heck the trainer in New York was telling us via FaceTime . Chris would then translate to me what was being said and directed me accordingly. Everyone needs a Chris in their life!
We finally received approval for out patient therapies! Nick now goes 2 days a week to Swedish Covenant Hospital and he has been working with a PT, OT and Speech therapist all trained in nuero-rehab. This came about after calling the insurance company and basically pleading my case since they only approved Nick for ONE DAY of rehab in the beginning. I finally got a call from a nurse practitioner named Andrea who said that my file came across her desk from someone that I spoke with and she was going to be our advocate. She has been amazing. Truly amazing.
We found a bike for Nick called a Theracycle which allows Nick to pedal while sitting in his wheelchair. It is tough to get him strapped in and going but after the first minute his body relaxes and his muscles let out a long sigh of relief. We were originally shooting for something called a Quadricycle but it costs $18,000 (I know weird right? Just like his bed) so we settled for a $2500 mechanical bicycle until we figure something else out.
Nick has been receiving Thai Massage by a friend of mine Allen Walker who is my Thai therapist and I just knew that Allen would tune into Nick energetically and I was so spot on with this. He and Nick have these amazing conversations. Allen speaks and Nick responds with his body and Allen just keeps the conversations going. It is really something to watch.
Penny still comes by on a regular basis to massage Nick’s wrists and feet and Marty a physical therapist comes by weekly to work on Nick. She gives me an assessment of where she feels he is at and some goals to work on that week. These girls are angels I tell ya!
Nick’s former co-worker has been visiting weekly and its been wonderful. They have so much in common from music, anime, art, video games. She isn’t fearful of his twisted body or that he can’t speak she just plunges right in and picks up their friendship where it was left off that fateful afternoon on October 31rst.
His other friends bop in and out of our home which also makes Nick extremely happy. One of the last visits was on his friends Ricky’s birthday. Ricky told me he couldn’t celebrate his birthday without Nick so he brought a tribe of Nicks buddies and stayed for the afternoon. Ricky picked up Nick’s guitar and started playing a song that they used to play together when and Nick literally picked up his head off the wheelchair back and turned and looked directly at Ricky. We were all blown away by this. You can tell that Nick recognized the song.
My friend Paige had been diligently working on getting Nick therapy dogs to visit our home and she has been very successful! Nick has been visited by a registered therapy dog named Jake. This also inspired Zen to bring over her Bernese Mountain Dog Levi. You can ride Levi because he is that big, but he was amazing with Nick. So gentle and patient he is a natural therapy dog.
I have friends who I call “The Crowes” (it’s their last names :-) that live down the street from me. I see them weekly they run errands, massage me, paint, bring their dog over to sit on Nick’s lap. Wonderful people. Lisa one time made my father in law laugh so hard that now when he comes to visit me he asks for her. It is sweet.
I am still being fed regularly by Tina and Rose and Christine has been coming over to cut Nick’s hair and my hair and she always is bearing gifts of clothes, do dads, products who the heck knows what will be in her arms next. Mostly, she is my personal comedian because she is a gifted story teller and she makes me laugh.
Jackie is up to her magical ways of fundraising again. You remember Jackie because she set up our youcaring page. Which I can’t thank people enough for donating.https://www.youcaring.com/the-nigro-family-463208
Jackie has created “Nights for Nick” where individuals or groups of people create their own personal event and raise money. So far our ramps have been paid for and Nick’s medical bills for nutritional counseling and tests have been paid for but we are shooting for his car lift and bicycle and to get a stander at home so Nick to stand up.
Tina and I are still trying to figure out how to create a family foundation so we can create on going events because as you see this whole journey with Nick will be in the millions and that is a lot of money to raise. I am trying to get Nick into long term programs that specialize in anoxic brain injury and I know its hard to get the insurance companies to cover it so I may have to supplement part of it.
There is more to tell you but I have to go take care of Mr. Nick. I just want to say one last thing to my boss Miracle Matt. I couldn’t have any peace of mind without your generous gift of space and breath. Because you gave me some time to wrap my head around all of this I can function and fully participate in Nicks miraculous healing.
Thank you Thank you Thank you.