Posted by socurbaby7 on 07/28/2020
Dad sitting by the beach
Advice, Help, Support...

Hey All,

So my dad seemingly suffered a SCA on July 17th after running the mile with the soccer team I coach. He finished the mile, was walking around, and then he was down. Within a minute or so we realized he wasn't getting oxygen and we started CPR while another bystander called 911. We did CPR for 8 minutes until EMTs arrived. They continued CPR and defibrillated him and then gave him 3 doses of epinephrine, after which he finally had a pulse. They intubated him in the field and took him to the hospital. He never came to during this time.

Due to COVID we were left waiting in the parking lot of the ER for hours while they stabilized him. He ended up intubated, on a ventilator and in an induced coma with his temperature lowered. After a day or so they warmed him up and tried removing sedation to see if he would wake up. He didn't, at least not at first. It took a few days and he finally was moving his eyes they were able to remove the intubation and he could breathe on his own, but didn't seem to follow anything and was failing the responsiveness tests. After another day we were told his muscles were flacid which didn't look good and he may be in a permanent vegatative state. (He is a DNR, DNI so we knew hospice/end of life would come next). However, the same night we met to discuss this, his doctor told us on the call he was saying, ok, yes and no and moving his body.

So, after that I had to facetime (again because of COVID, we can't see him) and during the call he said "I love you, things will be better." Amazing! It felt like a miracle--felt like he was recovering and he was there. The next day came and we called him and he is in a confused state. Doesn't know who he is, who we are etc. but he is able to talk and fairly well but gets lost in his thoughts. He finally is able to go to bathroom, able to walk assisted.

So now I just don't know what to expect, what kind of recovery are we looking at. What kind of hope should I have. They haven't even dealt with the heart yet, and they can't see what's going on with his brain because his MRI and CAT scan were fine initially. But he won't stay still for another MRI. Any advice, comments?? Anything we should be asking doctors???

Comments

Submitted by SCAFoundation on 07/30/2020

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Thank you for reaching out. We are sorry to hear you are going through such a difficult time, especially with COVID. We are hopeful that your father will be okay. Many people who survive cardiac arrest are confused and forgetful in the beginning. This article may be helpful. You will see you are not alone.

 

Hi, Socurbaby7... I read your post and want to reach out in hopes I can help.

First, I am so happy that your dad survived, thanks to the courage and strength of you and your colleagues to take action and not panic. You, your dad and your family are now on a connected yet different journey with so much to process in this first year especially. And, it takes time.

My husband, Rick, (age 56 at the time) suffered SCA. I, too, gave him CPR. It’s now been 8 years! Your dad and my husband are both survivors… and you are a survivor, too. What you experienced on-scene and are experiencing post-resuscitation is so hard. And, COVID-19 makes it even more so…

I cannot know exactly what you are feeling, but I want to let you know that you are not alone—though I’m guessing it sure feels like it. I have shared my personal thoughts with other family members of SCA survivors who are grappling with life after SCA. I hope that somehow my insights will help. I am not trained in counseling, but I know how much it helped me to connect with others who had walked in my shoes.

Your dad is in the very early stages of recovery. His mind and body have been through so much. I remember how challenging it was in the hospital. Rick was not Rick… and I was terrified he would be this way forever. I was so grateful that he was alive, and yet I felt so alone and afraid for him… for me. His heart had been fixed, but his psyche was different. And, no one could tell me what his recovery would look like. I just had to have hope.

We'd all like to think SCA is like the movies. A victim is resuscitated, they wake up and are back to normal instantly. Unfortunately, it is anything but. I learned much later, after Rick processed what had happened to him, that he really felt disconnected and in a bubble for about 6 months. He would hear me tell our story, and he felt like I was talking about someone else. He lost two weeks of his memory that never returned, so he questioned so many things. He first needed to heal his body. His emotional healing came later.

I’m here to say that with lots of hard work, Rick is doing great. In fact, we both teach CPR and share our story at conferences, where we have met so many amazing survivors and families impacted by SCA. Life is different. But life is good.

Your questions:
- As far as the MRI, maybe they can do it in a standup MRI? May be worth asking about… patients actually sit and they are not in a tube.
- We were lucky in that the hospital selected a special neurologist that also had a psychology background. He was so helpful in the cognitive and emotional recovery.
- Rick got a stent about a week after his event. He went into SCA due to the unusual blockage that he had. So, the stent fixed his issue, fortunately.
- I remember that Rick was on pain meds for his broken ribs, and they did not send him home on those meds. So, when he awoke with chest pain his first morning home, we went back to the ER… Broken ribs are very painful. We laugh about it now, but it was so scary. So, ask about this before you take him home.
- Ask about whether your dad may need an ICD (implantable cardioverter defibrillator). Many who suffer SCA may need one. It acts like both a pacemaker and can shock him if needed. Rick does not have one. If your dad doesn’t get an ICD, you may want to get an AED for your home. We have one.
- Encourage getting your dad into Cardiac Rehab. It was Cardiac Rehab (about 4 weeks after Rick left the hospital) that really helped him regain his footing and incredible zest for life. For us both, rehab solidified a heart healthy program to speed healing of mind, body and spirit. It was a safe place for him to exercise, which made us both feel better. And, it was something that he had within his control. It really was as much a mental boost as anything. His life had forever changed in a heartbeat, so cardiac rehab and all the people he met there were so inspiring. And, Rick inspired others there, too. So, it gave him purpose. Help your dad find the strength within him over time.
- Depression and anxiety are normal. Hospitals and cardiologists are fabulous at healing the body from the neck down. Don't be afraid to ask about additional services to help him adjust emotionally, if you think that may help and he is open to that.

Over the years post SCA, I think what helped us the most, was getting involved in this cause a little at a time. We started first about 4 months into Rick's recovery by going to thank the EMS team for saving his life. And, after that we did the same with his doctors, nurses, caregivers at the hospital. We acted on our desire to give back to our community to advance CPR training and accessible AEDs. For us, that is not only therapeutic but also has helped to save more lives. I like to say that it doesn't stop with the "chain of survival" but rather it is a "circle of recovery" and giving back is part of it for us. We are now CPR instructors and volunteer with our Fire Department. Your role as a soccer coach is a perfect place to share your new knowledge as well.

When I was about 8 months into this new reality, other family members told me that it was about a year before they felt more at ease and the new normal had settled in. And, that came true for us as well. Looking back, while I hate that this happened to Rick, this experience has brought many, many blessings to our lives that I never realized could be in our path. We can never look at life quite the same way again. And, I live in gratitude every day.

Socurbaby7, you have come to the right place. SCAF has been a lifesaver for us… it helped me get my own heart in rhythm with this new normal and became a safe place for me to learn and heal. It was SCAF that introduced Rick and me to our new family of SCA Survivors and their families. So, consider all of us as extended family. None of us can know exactly what you or your dad are feeling, but what we do know is that we are all survivors and we all can lean on each other. We are all a part of a special club that I like to call “Heart Buddies.”

Day by day, things will get better. It takes time. There may be setbacks along the way, too... But I am here to share with you 8 years out, life is so very good.

One final but important thought, take care of yourself. You, too, have suffered a great trauma. I know right now your focus is on your dad. I waited too long to get some help for my own trauma. You are not alone on that front, either. I’m here for you if I can help as you make your way through your own journey.

With all my best to you, your dad and your family,

Your new heart buddy, Jennifer Chap (Jen)

PS... Please reach out any time... And, you can also friend me on FB if you like.