Jay is a retired Army veteran and just recently had to retire from the Bexar County District Attorney’s office.
Jay is my world. He is a wonderful loving husband, father, son, brother, stepdad, grandpa, uncle, cousin and a good friend to many, and never without a cheesy joke!!
But Jay is way more than all of that, he is a very smart, hardworking man, never selfish, always doing the right thing, and always ready to help anyone. Sadly, retirement came too soon and his simple goals for retirement now seem so far away, they included spending time and cooking the most amazing meals for our family and friends, gardening, playing cards, and enjoying his favorite past time fishing.
If you live in San Antonio you have probably seen and met Jay. Heck, he has probably helped you out or guided you through traffic. He was that big friendly 6’4 guy you have seen at the courthouse, or seen while he was working one of his many side jobs as a police officer. He faithfully protected our friends and families at school sports, high school graduations, Fiesta (his favorite is Oyster Fest), and too many other events to name. The last event he worked was the Rock and Roll Marathon on Sunday, December 4th, he worked 12 hours in the cold pouring rain!! He never complained, one moment about work, he loved what he did so much.
On December 9th, 2016, just about a year after our first wedding anniversary and a week after his 54th birthday, Jay suffered a sudden cardiac arrest. This day forever changed our lives.
His co-workers found him unresponsive and started CPR as soon as they could. He was shocked with the AED device 6 times. The most wonderful paramedic team (that included Angel and Ray (both officially deemed our personal angels in my book!!!) helped save him and got him to the hospital and into the hands of an amazing cardiologist who ultimately saved Jay. It is a miracle he is still here.
Sadly, that was just the beginning of our journey. As the days went on we prayed for a full recovery, but Jay suffered a secondary anoxic brain injury. He initially knew us, we were encouraged. But his initial hospital stay was plagued with complication after complication (too many to share), heartache and then some. One incident early on caused respiratory failure that resulted in heart and kidney failure, all this contributing to further brain damage. The picture of us holding hands is from that long, long, night where I held his hand tight, prayed over him, and begged him not to leave me. Something that has happened too many times during this journey.
I wish I could tell you the rest of that stay went smoothly, but no. It was awful. On top of all this, he suffered a terrible stage 4 pressure wound that has called the shots until very recently in his recovery. The wound prevented him from getting the cognitive and physical therapies he needed. He was in so much pain and has been through so much. How could his brain even begin to heal?
Jay was in a bad place, he was having seizures, running fevers, and fighting infection after infection, has had multiple surgeries, multiple blood transfusions (Thank you anyone who has ever given blood, you are a true lifesaver!!!) and a variety of Dr.’s prescribing drug after drug to manage both his physical and psychological care. Each medication was wrought with different side effects, mostly bad. Some days he knew me, most days he did not. My heart was so heavy.
I stayed with him day and night for the first few months, then finally reality hit. I was not getting paid and bills were piling up. I had no choice, but to go back to work. I had to trust they would take care of him. It is more than tough time. I struggled through work and visiting Jay daily in the hospital, never home. Never knowing what state I will find him in. I am his wife and advocate, my job is to ensure he is safe and protected. I cannot bear to be away from him or home without him. Not only is he my husband and true love, he is my best friend.
Recently, I got the call from the hospital. There was nothing more they could do for Jay. If he could not meet certain requirements, Jay would need to be put in a nursing home. I was asked to be at the hospital 24 X 7 to help. OMG, the shock to hear those words - Nursing home? I fell apart, I could not even breathe. That was not going to happen, that would be the end for my Jay. When he is not drugged up, I have had some beautiful moments with him, he is in there. I had to fight for him. Almost out of FMLA time, and no more sick or vacation days - this would be more time without pay. But there was no choice, my Jay comes first. I would do anything for him. He deserves a chance.
It was a tough week and a half. I fought to get him off the unneeded drugs. Jay started to come back to me. He got more alert, started communicating better, could sit up more, walk a bit with assistance and was starting to remember things!!! He even began to tell us how much pain he was in (something amazingly he never complained about before). Hard to hear those words from him (especially after knowing what he had already been through), but knew it was a turning point for my Jay. He could finally tell us he was in pain!!
July 7th, 2017, was a great day. We finally made it to rehab, not just any rehab, the same one we left in January when the wound trumped all other care and sent us to another hospital. It was like coming home. Familiar faces were good to see, we were remembered and welcomed back with open arms. And frankly, got lots of needed hugs!!
And it got better, the ambulance drivers transporting Jay, told us he told them he worked (before he was retired), rattled off our address with zip code, and gave his birthday with the year. OMG, all firsts since the injury!! I am so full of hope and joy!!!
After a minor transition Jay is settling in and seems to be doing well most days. It is challenging for him, he is still in pain and fighting an infection; however, he is adjusting and is joking again. His sweet character is emerging again. He keeps the staff laughing and all of us on our toes.
The wound is a lot better, but still not out of the woods. He might require another surgery that will keep him down again (kills me), but hopefully he has time before then to take advantage of different therapies to help with his physical and more importantly cognitive healing before we have to cross that bridge.
He will soon have surgery to remove the IVC filter and another to remove the feeding tube eventually, if he would please just start eating again.
Sadly I have also had to finally resign my position at work, it has been too difficult to manage work and everything else. It was a difficult decision, but I had no choice. I need to concentrate on the most important thing, saving my dear Jay.
It is overwhelming knowing the long road of healing and struggles ahead for us. But I am looking forward to this part of the journey, finally having the opportunity to give Jay this part of his life back.
This is where we need your help. Our time with insurance for rehab is running out and soon I will be forced to make decisions for long-term care. It will NOT be a nursing home!!! My goal is to get Jay well enough to eventually come home, where he can continue getting better, and live a life with love and dignity, the life he deserves and worked so hard for.
That is where you come in. I am asking for any amount you can spare to help us. Any funds raised would be gratefully appreciated. My wish list is to get a special vehicle for transport (if he is not walking on his own), make adaptations to our home, get help home health care assistance, help pay our bills, get him into a neuro rehabilitation program, anything not covered by insurance that could help my Jay. A dream would be hyperbaric oxygen therapy (HBOT). Dr. Paul Harch in Louisiana has had amazing success with this therapy!!! Jay would be a great candidate, not only for the hope to help heal his brain injury, but this therapy is also proven to help heal wounds.
Finally, I would like to share that have learned so much going through journey this with Jay and also being a lung cancer survivor (non-smoker):
Never take anything for granted, to take every day, every moment one at a time. We never know what to expect, so we have to be ready to be strong and adapt no matter what.
Make sure to take the time to appreciate your loved ones, celebrate little victories, cherish the good moments, learn from the bad, and never look back, only forward. I am only looking forward!!
And most importantly – never, never give up, always have hope!!!
I believe in hope and the miracle that is my Jay, he has been through so much and has fought bravely to survive and stay with us. He is still fighting through the pain and against the odds. He was my hero before and is my hero even more so now!!!
I just know he will continue to fight and get better every day. We just need to make sure he has the resources to help him.
In the words of Vincent van Gogh, “Great things are done by a series of small things brought together”. The words are so true, together (we are those small things) and together we can make a difference and do great things to help this wonderful deserving man.
Please also know, this journey will not end with saving Jay. I have been journaling and documenting everything we have gone through. Not only for his medical recovery, which in itself is overwhelming, but for the obstacles and challenges I have faced as his sole caregiver managing his/our affairs outside of the hospital (work, finances, our home, becoming his Guardian, name it!).
When things settle down, I plan to be an advocate and use our story to help other families and caregivers living with brain injured loved ones.
If anyone has any other information on resources, possible treatments, research and clinical trials, benefits, scholarships, grants, anything that could help Jay and others, please be sure to share them. I would be so grateful.
There needs to be more awareness, education, funding, and research for this devastating prognosis. This is not a short-term injury; entire family’s lives are forever changed and need to be supported.
Currently there are:
· No consistent medical protocols to care for brain injured persons
· Very limited resources to help brain injured persons, their families and caregivers.
· Too many caveats that prevent families and caregivers from getting the therapies, financial support, and medical care they and their loved ones need.
So sorry for rambling on, there is so much to say. But, please know, Jay and I really appreciate your prayers, and anything you can do to help. I thank you from the bottom of my heart for reading our story. Together we can and will make a difference, not only for Jay's recovery, but to also promote awareness and to help others.
Please help me save my dear Jay, please share our story and campaign with others, anywhere you can.
I sincerely thank you,
Pamela Miller-Neumann, devoted and loving wife, caregiver, and Guardian for Jay Neumann.