New Here - Need to get my story off my chest and hopefully out of my mind

New Here - Need to get my story off my chest and hopefully out of my mind

Hello, This is long but I have to get it out there.
Some background: When I started dating my husband i knew i would need to brush up on my cardiac knowledge. He was born with Tetralogy of Fallot and had 3 major surgeries between the ages of 3 days old to 14 yrs old and would need pulmonary valve replacements throughout his life when the old one wears out. By the time we got married and i got him on my insurance it had been at least a decade since he had seen a cardiologist. So we thought its time to start seeing someone and get an idea of how things are going in there. Three months later he's in surgery to repair an aortic arch aneurysm, aortic valve and pulmonary valve replacements. It's ok we made it through it's all good. Fast forward 4 years and we are back getting a catheter ablation for atrial arrhythmias he doesn't even feel. Well that sucks but we made it through better a scheduled procedure than the alternative.
5 months later May 25th 2017 around 1:00am
I wake-up and have this horrible ominous feeling; was it a bad dream, is someone breaking in, one of the babies. I lay there quietly listening...nothing...I drift back to sleep listening to hubby's breathing.
1:50am Nudge him he's now snoring. Brad you're snoring. poke poke Brad! BRAD! WAKE UP! try sitting him up BRAD!! turn on the lights he's not snoring call 911. Struggle to pull my 250lbs 6'6" dead weight husband to the ground. I've been trained in CPR for 10+ year but i have her walk me through it. Please hurry. I feel myself getting tired already and i'm desperately trying to keep going right spot right speed right pressure why am i so sweaty or is that him the bedsheet was drenched. Hurry. I hear the knock dispatch tells me to answer. They move him into the kitchen more room. They intubated, resumed CPR, gave meds and after 3 shocks got sinus rhythm...Thank God. I called my father i could barely talk loud enough for him to hear me. My parents live 5 minutes from me; he got there as they were getting Brad on the backboard and loaded. He stayed with our sleeping 11month old and 3yr old girls that had miraculously not woken up. I had to drive myself to the hospital 5-10mins away. breath. i'll be right behind them. breath.
Get there. talk with reception. doctor will come get me. breath. They come get me. He's stayed in sinus but he's on a vent and his lungs are junkie he hasn't regained consciousness. They've called Life Flight, Sacred Heart and UW Medical looking for a bed. UW we want them that's where his doctors are. He's posturing, they paralyze and sedate him, take him to CT. oh crap his brain i didn't even think about that. once his rhythm came back. it's always been his heart not other areas. CT is clean but who knows until he wakes up. Finally we get the call UW is taking us. Thank God. Life Flight medical crew gets there. load up and drive to the airport. Load onto the plane. He's stable but paralyzed and sedated. Touch down. Now to get through morning rush hour in Seattle. Please move people. Thank God we get to the hospital quicker than i thought. Up to CCU. Time for me to wait while they transfer him. Finally i get to go back to him. They have him hooked up to a cooling machine that will lower his body temp and hopefully preserve brain function. They cool him over the next 24 hours then rewarm him over another 24hrs. 48hr until we know what his brain function will be.
So many hours to play the what-if game. He wont see his baby girl baptized or turn 1 or say her first words or her 1st steps...he's a stay at home dad our girls will be crushed. He'll be missing so much of their lives how can this happen he's only 31 or i guess 32 in three days. Why! why is this happening we just saw his doctors!
Different doctors showed up over the next hours all wanting to hear my story of what happened over and over i had to relive it. Finally a familiar face his cardiologist please have something for us...an answer to why. Nope they don't understand what went wrong there were no red flags that this would happen. Its probably just a progression of his CHD. Frustrating.
First 24hrs down now to rewarm. Please God let him be there he has to be there. tick tick tick Hope creeps in i try to keep in the check but I'm a very light sleeper maybe it had just happened and i got cpr started quick enough. Help was there quick. We got to UW quick. He's ok everything will be fine. tick tick tick they lower the paralytic and sedation. his eyes flutter. Brad Brad can you hear me. his eyes try to follow my voice. Can you squeeze my hand...nothing. tick tick Eyes flutter again Brad can you hear me squeeze my hand. 22hrs into the rewarming and he's conscious enough to look at me, squeeze his hands and wiggle his toes. They get the orders to do a breathing test and get him off the vent. @ the 24th hour he's of the vent, talking and eating ice chips.
Do you know where you are? no Do you know what kind of building you're in? ?hospital? Do you know what year it is? 2016 His memorys not all there. I ask do you know how many kids you have?.....2 Thank God Can you remember their names? Kaitlyn (older) and ....nope. He named them how could he not remember. I smile "It's ok Brad it'll come back." I hope. His short term memory is what really took at hit. The next couple hours over and over he'd turn to me "what happened?" and i would tell him. Laying out the worst days of my life in short factual bullet points trying to get him to remember.
We spent his 32 birthday in the hospital. He got cake and watched racing all day. Still his short term memory was on a loop. I don't know how many times i heard the same racing facts. The next days were spent waiting for surgery and his memory slowing coming back.
One week after his SCA he got his ICD which can pace him out of an arrhythmia or shock him. The next day he was released and we drove home.
With weight lifting and movement restrictions the next weeks were spent scheduling a babysitter for well to be honest all 3 of my babies. Brad couldn't remember his restrictions, Kaitlyn wanted to wrestle and jump on daddy and Mira just wanted to be held by her daddy. It was a miserable 4 weeks where no one was happy. The good part was Brad's short term memories were sticking...yes! In 2 days we go back to the doctors and get the whole gambit of test and visits.
Mentally and physically he says he's good so I try not to talk about it.
For me there's not much else I can. Every minute while i'm at work I worry. When we go to sleep I worry. If i go to sleep before him and wake up and he's not there i rush out to the living room what if something happened and someone isn't there because what if he had fallen asleep out there that night he'd be gone. I worry about him driving with our girls in the car. I am constantly worried. I can't talk to him about it how do i burden him with my fears. I don't want my fears to become his. I feel like I'm the one with the problem. Laying my head on my pillow in the house, room and bed where the worst moment of my life happened.

Bob Trenkamp's picture
Bob Trenkamp wrote 10 weeks 5 days ago

Your post...

Wow. That will help a lot of folks!

Thanks

Bob

Bob Trenkamp, President
Saving Lives In Chatham County
www.slicc.org

SCAFoundation's picture
SCAFoundation wrote 10 weeks 4 days ago

Thank you for sharing your experience

Hi Cynthia! Thank you for sharing your incredible experience. We are happy to know your husband survived. Clearly, you have been through a very challenging time. Your experience as a spouse of a survivor is so important to share and may help so many others. Please know you are not alone. We welcome others who have had similar experiences to share their stories and guidance with you.

Best wishes,
Mary Newman

Sudden Cardiac Arrest Foundation

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