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Nick had a sudden cardiac arrest at the age of 23 on halloween 2015 due to contracting the West Nile Virus.
That day Nick was preparing to head to work when he told me he was very tired and wasn’t feeling well.
A short time later, Nick experienced cardiac arrest. His Dad and I immediately started CPR and called for help. By the time Nick got to the hospital he already suffered an Anoxic Brain injury from the lack of oxygen in his blood.
We were told that Nick would remain in a persistent vegetative state, but thankfully that did not happen. Nick is a warrior — a fighter and one determined young man. He is now in a conscious state re-learning how to do everything. While we are still in the early stages, Nick is re-learning how to eat food and how to communicate with a computer program that reads his eye movements. He currently does not have full use of his arms or legs and is wheelchair-bound and requires round-the-clock caretaking. Three times a week he has physical, occupational and speech therapies, in addition to the massage therapy he receives twice a week.
The medical bills for that one day in November 2015 were $349,000 and the bills never stop. For someone with this type of brain injury, the road is very very long and the insurance companies begin to pay less and less as time moves forward. Nick will have many uninsured illness-related expenses for the rest of his life.
To help with the financial burden of Nick’s uninsured expenses, a fundraising campaign in his honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible to the full extent allowed by law, are held by Help Hope Live in the North-Central Catastrophic Illness Fund, and are administered by Help Hope Live for illness-related expenses only. Please consider making a contribution today and click the GIVE button.
Keep an eye on Nick’s campaign page at www.helphopelive.org because we will be planning some fundraising events soon and posting updates regularly. If you would like to volunteer your time or talent, please call or email me at the number or email below.
Thank you for helping and giving Nick a chance for a better life,
Lisa Nigro (mom)
Gabby61@gmail.com 773.425.8391
3 Tips for family caregivers
Nick and I have a TikTok page. You can find us there at lisa.nigro. We are using it to educate people about the Anoxic Brain injury journey. Here is one of our recent videos that isn't about brain injury per se, but it was a nice day.
Nick has started water therapy and he is using the pilates reformer. He is trying to gain muscle that he recently lost after losing over 30 lbs recently.
There is a fundraiser planned for Nick on May 19, 2019, created by the son of one of my long time friends. David Kaplan Perkins (KP) decided about 6 months ago that he wanted to make a difference in someones life and we are the very lucky recipients of this heart felt movement.
The event will be at Uncommon Ground in Edgewater from 1-3pm
There will be entertainment and we will be showcasing art by Nick that can be bid on as a silent auction.
Uncommon Ground - Edgewater Listening Room
1401 West Devon Ave
Chicago, IL 60660
Today on October 31
I have a blog about our journey on my website www.lisanigro.net. This was the last post I made on Nicks 2 year anniversary.
I have been avoiding this post for a while now. The past few months have been rough for me on this caregiving journey. We are rounding the infamous 2 year mark for Nick's heart attack and brain injury. This is the time when insurance companies write you off and doctors are less enthusiastic about recovery or any forward movement in healing.
This also marks the time when the outside world does less cheerleading because it is hard to see things move so slow. This world wants everything to "righted" right away. We have things to do, people to see, planes to catch we can't be held back with humans in need right now! We need to be cheerful and our lives need to fit into the boxes we have created in our minds for so long. If we stray off that path we have failed. We have put our lives on hold for way to long and now it's our time, my time and I can't listen to one more sob story.
That is how it feels out here in the caregiving abyss. One needs to be healed so the others can feel better about their own lives. I know you want me to say "I am fine, and things are great" because in doing so you won't have to engage deeply. When I don't answer in a super positive way I know you are thinking "Hey Man , don't harsh my mellow."
Can you feel my sarcasm ? Yeah, I have been an angry beast for a pretty long time now. Recently though I have rediscovered the work of Byron Katie, and the Course in Miracles and I completed a meditation teacher training program which culminated in a straight up kick in the ass. All of these teachings as of late are taking every obstacle and turning it into a question for deep spiritual leaning.
I call it the Holy Turnaround. It has rattled my cage and made me really do some deep dives into my anger and my relationships. How have I contributed to my own angst? How have I maintained sub par friendships and what have I really got out of doing that? When are all these obstacles in Nick's care really a call of opportunity? Can I just stay in my lane and trust that in doing so others can step up to their own lives, grow their own selfs, and it is all okay to do so?
All relationships have seasons. I am getting clear on which are alive and which are dormant and which are dead. This is a natural process and I appreciate that even dead wood can fertilize. As I navigate the waters of the secret brain injury club I hear and witness some very complicated life stories and I see the tenacity and strength of families going through the same things we are going through and I am in awe.
Here are some Nick victories:
Nick's wrist bones are not fused and they have movement and can have surgery which will release the tendon so Nick's hands can unfold. We are just trying a few things to make sure that upcoming surgeries will have less complications. We are waiting on guided Botox treatments again and some splinting to stretch things out. How wonderful to think that Nick may have the chance to play an instrument again.
Nick has been eating blended food via his gastric tube instead of canned formula. This has been life changing and a very big Holy Cow moment. The processed foods in the canned formula was slowing Nick's brain down and screwing with his digestion. He has improved in his health so much that the doctors and I are reducing some of his medications. Preparing the blended meals has been very time consuming for me, but it's all just a learning curve and eventually I will have it all down so it won't be such a big deal.
Nick has been painting with Corri who is Nick's caregiver and who is an artist and special ed teacher. Doing art with Corri has allowed Nick to rediscover his arms and how they move. He still has severe spasticity, but he is actually moving his arms more and allowing them to be stretched further which is a victory. Corri also works on communication with Nick which is still unfolding, Perry and I feel we are understanding Nick more.
Nick has been humming more which encourages me and his speech therapist Marja that some sort of words are around the corner. This is in direct relation to his music therapy he gets with Lindsey Baer each week. Lindsey explores all types of music with Nick and he listens deeply and concentrates and then out of the blue I will hear a small hum coming from him. Many times there is a rhythm to his humming so I know he is breaking down some sort of song he has internalized.
Music has been important to Nick so knowing he is making connections in this way is deeply moving to me. I am always trying to imagine what his first words will be and how I will hold the sweetness of his voice so close to my heart.
We are reducing some of Nick's medications as I said before, and this is very encouraging. The neurologist has agreed to explore possibly reducing his seizure meds and he is also allowing me to look into CBD oil for Nick which I have heard from other people with brain injuries that this oil has helped with sleep and with reducing muscle spasms.
Those are some of the highlights with Nick. There are a large load of obstacles on our path simultaneously , but I am trusting in a higher power that some how and some way I will figure out how to tread through those with grace and compassion.
Pray that I keep trusting my inner guidance system. My inner teacher.
Pray for Nick that he does the same. His inner teacher has a big agenda and I am learning from him every single day.
Nick has been working on his Quadriciser and doing well. It helps him coordinate his muscles and creates a neurological pathway of crawling which is what he needs to do to begin to walk again.
We are trying to rally and purchase a piece of rehab equipment called The Quadriciser which will help Nick's spasticity and with his patterning pathways of his brain.
Check it out below
Finally figuring out a way to keep all informed. Never thought of linking my caregiving blog here and then I realized this morning it may make things so much easier! I blog about Nick and I at www.lisanigro.net
Here is a video update.
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The Liao Family will always Support the Bigro family. Much Love is being sent your way.
Kelley Hughes
More love to Nick!!!
Jim & Tina Krag
We love you, Nick!
Jim & Tina Krag
---
Cindy Greenier
Thinking of you on Giving Tuesday and everyday.
Kathleen Meyer
Keep on trucking Nigro’s. Much love!
Ivy Guarise
Lisa, wishing your family much success in the year ahead❤️
Nancy Jaffe-Faloona
I so admire Lisa and Nick.
Their courage and dedication are super human ❣️
Faith Stone
Lisa Nigro is an incredible individual. It is my priviledge to make a donation in honor of her son Nick.
Michael Weiner
Go Team Nigro. ❤
Tamara Tarasiuk Scott
We love you team Nigro. The Liao Family.
Kelley and David Liao
Love you Nick!
Tonee Puetz
Continued blessings to Nick and family from us
Ivy Guarise
Wishing you love and strength
Anonymous
Thank you for your life, your music and your smile, Nick!!
Ruth Payne
Love you!
Clara Restrepo
Go Team Nick!
Laura Robinson
Thinking of you today, on giving Thursday, and everyday. Sending love and support to your family.
Kathleen Meyer
Thinking of you and Nick today and everyday. Sending our love.
Kathy Meyer
Sending Love and support to our Team Nigro ❤️
Cindy Greenier
Blessings to Nick, Lisa and the Nigro family.
Diane Miller
Lisa you are my inspiration!
vicki and Larry kaminsky
Thinking of you today on "Giving Tuesday" as well as throughout the year. I am hopeful that your journey to Miami, FL to get Nick the physical therapy he needs will be successful. There's nothing stopping you, Team Nigro!
Kathleen Meyer
Fight on, Nick.
Anonymous
Thinking of Nick today on Giving Tuesday. I know you will use this where it is most needed for Nick's comfort or enjoyment. Is Nick still painting occasionally? I know he gets pleasure from art and music!
Kathy Meyer
Love you Nick!
Jack Rozint
Thinking about your family and praying for your continued strength and love on your journey.
Robin Callahan
Lisa, wishing you and your family love, peace and joy during this holiday season.
Karen Silverman
Keep up the good fight, Nick!
Laura Robinson
Thinking of you on Giving Tuesday -- and every day.
Kathleen Meyer
Much love for you and your family Lisa! Youre the strongest and wisest person I know. What you do for Nick on a daily basis is truly inspiring. A mothers love can move mountains
Shayla Miller
I love the mindfulness of this event!!
APRIL Greer
Inspired by KP’s energy and enthusiasm,
Thank you for a great Beacon show, Mrs Gomez-Escobar
Eugenia Gomez
We are so impressed by what you've accomplished and look forward to hearing of future triumphs.
Rick Mosher and Alison True
Rick Mosher
Dear KP,
What an amazing thing to do for your friend! I can't attend the fundraiser, but I know that it will be a huge success and so much fun! This is such a meaningful way for you to end your time at Beacon Academy! Congratulations on doing such a personal, meaningful event.
Fondly.
Ms. Lazarus
Lea Basile-Lazarus
We are so inspired by Nick and the Nigro family. Thank you, David KP, for making this happen. We are so sorry to be out of town on Sunday but are pulling for all of you with all our hearts.
Terri and Dave Abruzzo Callahan
Guts!
Brian Riley
With you, Team Nick!
Chris Kowalke
I fondly remember Lisa Nigro, Nick's mom, from an interview I did with her more than 20 years ago about the Inspiration Cafe. I was inspired by Lisa and her story then and I'm inspired by Nick's story now.
Wishing you both every good thing!
Rodrigo Sierra
Happy Birthday, Lisa! We want to celebrate you with a donation to Nick's fund.
Love, Kathy
Kathy Meyer
Sending love, courage, peace, and strength to you and your family Lisa!
Deb Ridgway
Today is Giving Tuesday and we want to honor Nick with our donation. You're on our minds and in our hearts every day. Our love to you!
Kathy and Steve
Kathy Meyer
you are an amazing family. Miss you Lisa,
MB
mary beth lutjen
A friend of Jackie Kaplan's is a friend of mine. Wishing Nick, his family and his dear friends continued progress as everyone moves forward.
Eric Loeffler
Go team Nick!
jodi Engelberg
Always in my prayers.
Am in awe of your strength.
Wish I could do more.
Nancy Cole
Nigro Family, always in my heart. I wish it could be more, and hoping a little bit helps. Love you all oxo
valerie mccune valerie mccune
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Nick Nigro
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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