You know that moment in movies tv shows and movies when the doctor comes out to the terrified family members and says “they’re not going to make it” or “it’s worse than we thought.” You know the family member/s are sitting the waiting room and a doctor in his surgery get up comes out and breaks the bad news and everyone is in horror and sobs, falls to the ground, wails. Kinda like this…
Also the surgeons totally don’t touch you like this…
Well that moment, the few minutes that are only supposed to happen to us once or twice in life, that moment was my life for nearly three months straight.
It’s been a year one year exactly 365 pain-filled days since my moment truly started. People have asked me numerous times why I haven’t written about it or shared my story, well I guess our story (my husband and I) and outside of the obvious, I don’t have time for it, it’s more because it was too horrifying. It’s hard to think about because then I have to deal with the fact that this is my reality, this truly happened, and even though my moment of utter dismay has subsided I still very much live in the terror that began one year ago. However, it has been a year, time has passed and I suppose its time to really tell people, including my husband what happened to him.
It was around the beginning of June of 2015, my husband Jake and I had just got back from an awesome week vacation in LA. We had been dreaming and planning about our new life there and bubbling with the excitement of our first baby, who we just found out to be a little girl. I was about five months along in my pregnancy and 25 years old, same as my husband of three years at the time. We were happy, healthy, sure burdened with student loan debt and below par wages, but overall happy.
Announcing to the Interwebs we were going to have a baby: March 2015
Jake had been complaining about being tired, having a hard time breathing, not being able to catch his breathe and feeling a large mucus build up in his lungs: it seemed like his run of the mill yearly allergies and bronchitis. He whined for about a week, I ignored him: he was a very dramatic sick person, as most young husbands are. I ignored him until I got a text from him at work: “I feel awful, I’m ready to go to the doctor tonight.” While this may seem like a normal text from someone under the weather, it was different coming from Jake, he was willing to cancel plans, long standing plans to go to his least favorite place on earth: the doctor’s.
So we went. We, being cheap and frugal went to the new Mizzou Quick Care in our local grocery store: it’s basically the world’s cheapest and smallest urgent care. I mean it’s in a grocery store for goodness sake (showing our overall lack of concern). We walked in and a twenty-something college student came in right away to takes Jake’s vitals temp, normal, heart rate 125… well that’s weird, blood pressure 80/40….. She runs and goes and nurse practitioner. Mindy Cherrington (holler to this woman who saved Jake’s life), former cardiac ICU nurse, brand new to the quick care comes in. Mindy examines and takes Jakes vitals again… things are quiet and getting super uncomfortable. She looks really concerned, everyone is silent, she pours over his old medical records, nothing, nothing completely health normal 25 year old male. She tries to manually get a pulse, its irregular to say the least. Mindy tells us we have to go to the ER, the NP basically begs us to go right now, she said she feels really uncomfortable about his symptoms and that she is going to call the ER to let them know that we are coming immediately. We unenthusiastically agree, we will go. Jake and I walk out to our car, he refuses to let me drive, and we both agree I GUESS we will go to the ER if we have to, but first we decide its necessary to get some Arby’s because God knows how long we will have to wait at this ER.
We walked into the University of Missouri Emergency Department and walk up to the little check in window, they ask for Jake’s name, they hear it and immediately a few women whisper to one another behind the counter. Within seconds a nurse came running out and doesn’t even make us move, takes his vitals, grabs another nurse, they both come out and start talking to one another about a plan. The nurses then tell us immediately to follow them, we walk back a couple feet beyond the admitting door and another woman is running up with an EKG machine, they start placing leads all over Jake’s chest. The EKG reads heart attack, everyone is dumfounded that Jake is conscious. He walks back to triage and makes jokes about how all the nurses just want to see him with his shirt off and thats why they are making a big deal. Jake within five minutes of us arriving at the ER Jake is in triage, has two IVs placed, hooked up to an EKG, two nurses assigned to him, one EMT, a pharmacist, a cardiologist and an ER doctor: all just for him. To say we were confused was an understatement. Jake’s admitted, all the hospital staff is horrified and we get a diagnosis, myocarditis. It was Wednesday, June 17th, 2015, the date our lives changed forever and we had no clue what the hell was about to happen.
I started a little note in my iPhone that night, it became a diary of my terror that transpired for months and rather than a dramatic retelling of all that occurred I’d rather just post my account from this little iPhone note of the major events that occurred.
So: here it goes:
Wednesday June 17: Mizzou Quick Care for possible bronchitis. Heart rate of 125. Blood pressure of 80/40 and irregular heart beat. Recommended to ER. Stopped by Arby’s. Jake drive to ER while eating Reuben. ER immediately sent into trauma. Ekg reading extremely bizarre. Non stop arrimthymias. Admitted to progressive.
Thursday June 18: Myocarditis official diagnosis: both families arrive
Friday June 19: fluid in lungs is building up and Jake is throwing up nonstop. Beginning to feel weaker. But overall bounces back at night.
Sat June 20: Morning is good so Kimmels (my parents) head back to Kentucky. Breathing begins to be sporadic. Nurse forces us to go for walk. Walk results in 102 fever and feeling very ill. Gets moved down to the floor unit but gets so ill that they need to move back to progressive within minutes. Vtac (heart arrithymias) starts again, continues all night: heart rate shoots up into the high 200’s. Fever continues.
Sun June 21: Recommended to go to icu. Very unstable. Put central line in neck without pain meds. Jake feels very weak. Rough night and in terrible pain. Begins to be impossible to sleep. Kimmels come back. Rachel and Cindy leave. Jake asks Jim to stay with him at night and asks me to leave.
Mon June 22nd: Oxygen is needed constant, still feels terrible. Not sleeping still. Requests Jim at night again, can barely move.
Tues June 23rd: fluid is continuing to build lungs. Rhythms get really bad ended up setting off code alarms in the morning while I was there. Very scary. Prayers for Jake Gonzales is created. Bad night in ICU. Can’t move at all.
Wed June 24: Jake feels awful in the morning, had bloody noses all night from oxygen, covered in blood when I show up. So sad and weak. Tells me he feels like a bum. I go to pick up my mom and Jake asks for help breathing, doctors say that they need to intubate. When I come back he is vented. Got to kiss him on cheek and say bye. Crashes after tube. No one can place art line. Crashes again, codes repeatedly. Surgeon grabs me and tells me Jake needs impella surgically implanted through right groin artery. Surgery doesn’t go as well as planned.Blocks blood flow to leg and heart is still failing.. Recommended to be airlifted to Barnes in STL by Dr. Faye. Pumped with eight liters of fluid to make flight, doesn’t look anything like Jake. 5% survival chance of making flight. Dallas, Cindy, and Ray return.
Th June 25: Airlifted around midnight to STL. Makes flight through hundreds of ppl praying through the night. Emergency surgery to remove impella: almost loses right leg completely. Ecmo installed in left groin only. Stable for the night. Swan installed in neck.
ECMO at the edge of Jake’s bed: June 2015
Friday June 26: Through swan biopsy of heart taken. One giant cell found: Giant cell myocarditis. Transplant team consults me. Want to give ECMO some time. Had to get second canulet moved to right groin to improve flow and left groin is oozing blood everywhere. It goes okay, not super well.
Saturday June 27: Echo of heart is bad. Masood says he will need lvad rvad for years or will most likely die.
Sunday June 28: Stable day but still trying to figure out medicines. Two tornadoes rip through St. Louis. I’m horrified: they are evacuating and going to leave Jake to die.
Monday June 29: Slow day: just lays there nothing changes. I move fully into transplant housing.
Tuesday June 30: Semi awake for the first time today. Motioning to everyone and having a good time. Jake is being a sweetie and communicating everyone he loves them. Echo of heart is slightly better. Balsara wants to remove ECMO on Thursday if possible. Night time is terrible. Called in at midnight after he had to be shocked 11 times. I walk in to watch a small nurse, Rachel shock his heart at least a dozen more times. Central line is taken out as it is site of infection.
Wednesday July 1st: Left leg starts to swell and gets huge, knee is the size of a dodgeball. They think it’s infected. Turns out femoral artery burst and he is bleeding out. ECMO is moved to chest directly into heart with open heart surgery. Chest tubes installed, leg drains installed. New central line installed. Jake looks so sad. But the surgery is okay: bad rhythms throughout. Needs 11 liters of blood through the night.
Th July 2nd: Chest is closed in OR. Legs are swollen but getting pulses finally. Asleep all day. Bad rhythms in surgery, repeatedly shocked again.
Friday July 3rd: Needs to be shocked at least twice in the morning. Neuro consult because right side is weak and seizing begins. Neuro is rough with Jake after they leave he has to be shocked about four times in a row. Night goes well though.
Saturday July 4th: Balsara thinks he will need an LVAD as only hope for survival. Talking to me about transplant because of rhythm issues on Friday heart is badly damaged.. Stable day. Jake is ignoring me but responding to everyone else with eyes.
Sunday July 5th: Karis fasts for Jake. No rhythm issues. Sleeps through night: still ignoring me and will not acknowledge me.
Monday July 6th: Jake is delirious through most of the day. Starts fighting with everyone to pull on tubes. Boxing gloves put on over night. Breathing trials start, doing well.
Tuesday July 7th: Balsara wants to remove ECMO tomorrow. Jake is physically fighting with everyone through the day. Breathing trials are awesome. Jake has a ton more energy and can fully move all parts of the body including legs. Balsara wants to try balloon pump: if it doesn’t work LVAD will be put in.
Wednesday July 8th: surgery around 9am. No updates for hours. ECMO removed. Jake sustains heart. Doesn’t even need balloon pump. Leaves or without anything except meds and vent. Only needs 2 liters of blood. Stable through night. Best possible outcome.
Thursday July 9th: Goes to get chest closed around 10am. Quick procedure and tolerates it well. Heart is still working on its own. Stable throughout day and actually sleeping. First day I didn’t cry at the hospital cried at home starting at 11:38pm.
Friday July 10th: No issues overnight. Sleeping great today. New fancy feeding tube installed through nose hasn’t had nourishment in three weeks. Down graded to a nurse with two patients. Must mean you are doing better. Started getting fever overnight.
Saturday July 11th: Jake looks bad today, eyes rolling to the back of his head, bright yellow. Extremely high fever 108. Docs are trying to install a dialysis line to cool blood in order to break the fever. Breathing on own is possible but very labored, jumping out of bed to breathe. Not responding to commands. Doctors tell me he is dying and will die. ECMO has to be put back in because your blood pressure is too low. 20 percent survival chance to even get off the table. You make it through.
Jake in Barnes 56 ICU: July 2015
Sunday July 12th: Still on lots of blood pressure meds. Jake sleeps well. Start doing better overnight off blood pressure meds and heart rate normalizes out of 200s.
Monday July 13th: ECMO is working well regulating high fever. Jake goes to or to get chest closed and get bone marrow biopsy. Full neuro check, you respond to commands know your name and can lift all limbs. We hope the temp didn’t destroy his memory or cause serious stroke.
Tuesday July 14th: Stable all day. Off most meds now. Restless at night. Trying to pull on his tubes.
Wednesday: I saw you look at me today and you tried to talk it was very cute. They turned down the sedation a little and you got too rowdy so we had to put you back to sleep.
Thursday July 15: You were trying to talk all morning started sobbing. Then went to the OR today to turn down ECMO. Jake was bleeding too much, bled out twice and they had to slash blood pockets on your heart. They told me Jake needs an LVAD for sure. I cried all day. Miss my best friend.
Friday July 17: Resting today. You were actually asleep when I came in so I left you. Nothing planned for the day but letting you sleep. I got nervous again and had to come back and give you a kiss before surgery tomorrow. I found out Schomaker has cancer and we talked and cried today. God is doing things through our suffering. Slept tight buggy boy.
Saturday July 18: LVAD implant surgery today. Surgery went well and you didn’t need an RVAD after all. Jake got a high fever shortly after surgery.
Sunday July 19: Keri the nurse broke the fever over five hours. Jake woke up and got mad that he had ice packs all over his body. Jake slept most of the day and had a CT scan as well as an EEG to test for seizures: both were negative at this time but not conclusive. Jake managed to pull feeding tube out his nose even with arm restraints on over night. Crazy boy. Temp stayed down through the night.
Monday July 20: Your temp is still down, actually a little cold right now. Feet look less blue today more purpley and your heart rate has slowed quite a bit mid 100s. You grabbed hand when I wasn’t looking and held it. You looked me in the eyes and started squeezing my hands in response to questions. When I started crying you squeezed harder. You could understand me. I know your brain is working right now. What a relief. Their plan is to wean some meds today. That’s it. You were in a lot of pain but we’re able to communicate with me.
Tuesday July 21: We listened to music and held hands most of the morning. You had some VTACH episodes when you got overwhelmed. I gave you a neck rub and you immediately fell asleep. Guess it hurt pretty bad.
Wednesday July 22: I stayed in your room for seven hours straight with you awake. You were so scared and anxious. You kept gagging on the breathing tube and were so out of it you couldn’t relax. I was wiped by the end of the day. You had me doing something for you every minute. You did great on your breathing trial but got way to nervous and wanted it to stop from the beginning. I had to leave because I was exhausted, drained and felt sick so they upped your sedation and you slept through the night.
Thursday July 23: Good stable day you were in a lot of pain but slept most of the day. You did a breathing trial for four hours in your sleep. Better when we don’t tell you.
Friday July 24: You got shaved, lines changed and removed and then a trach surgery. It made me so sad to see you with it. I asked you if you were mad at me and you said no. I asked you if you still loved me and you said yes. You look so sad and like you’re in so much pain.
Saturday July 25: The fever came back today. You hate the trach and are very delirious. We tried to rest you most of the day but you tried to be a little crazy.
Sunday July 26: Officially off all meds for heart support! Only one med through the IV at this time the rest through feeding tube. Switched off sedation and over to OxyContin this is making any mobility very difficult. Finally becoming aware of what’s going on.
Monday July 27: I walked in at 630am and you were face down in blood with your trach bleeding all over you and you were choking on clots. They had to have thorastic come pack the wound and then bronch you to make sure there weren’t more clots in your throat. I had to physically pull and shake one out of the back of your throat as you were choking an gasping for air. The low grade fever is still lingering at this time. You got your swan out and your dialysis line. We got an echo and your heart on the left side is pumping fluid and continuing to heal for now.
Tuesday July 28: As of 2am you were not on any pain meds or sedations at all. You were twitching like crazy, could not stop shaking. Tried to tpiece today but only lasted an hour: you tried to get out of the bed twice and so he sat the bed up in chair position which was exhausting because you can’t hold your head up. We got moved out of the severe ICU into the heart failure ICU. As soon as we got down there you became very aware of what was going on and when “Come thou fount” came on you started sobbing. The Pugsleys walked in shortly after and we all cried and prayed together. Your mom came and you did great with her and then Kevin and family came and you loved seeing everyone. You still cannot move.
Wednesday July 29: You didn’t sleep at all last night and were making weird turkey noises and sticking your tongue out at me constantly throughout the morning. Very scary. We found out your cuff was deflated and you were in pain. I had to beg to start you on pain meds. You finally calmed down after that. Pt came and you did great on the tilt board. You only lasted 45 mins on your breathing trial tho and were sweating through the whole thing flipping out. You started slowing your mind towards the end of the night and your fever started climbing. You didn’t sleep all night but for a couple mins.
Thursday July 30: You were semi asleep when I came in so your mom and I went to go get breakfast in the caf. She ate oatmeal I cried. Your fever is still constant and climbing, no one knows what is going on. I came back up and you did the tilt board for forty mins and sat in a chair for an hour after being lifted there. Your trach started oozing blood again and you were suctioning blood all day. We had to do another bronch and clean you up. You were sweating from your fever all day and couldn’t stop. I washed your hair and you got mad about it. Your physical and mental state have declined with lack of sleep and the fever.
Friday July 31: Cortis line was taken out and you were taken down to get a Double hohn placed. The pain meds didn’t kick in until you were out of the or you were so mad and then you fell asleep. We took non stop cultures from you to see what was causing the fevers and weakness. After a full body CT we found out that you have pneumonia. The doctors aren’t convinced by this but will allow treatment. This explains the weird fevers and lack of movement if its true. You were much more agile and with it today. Uncle Jim and Aunt Ellie came and so did the Gutweins and my dad. You were starting to get some of your movement back. They figured out that most of your twitching and lack of sleep was caused by your sedations or medication issues. They found a medicine that counteracts it. You slept off and on through the night and slowed your twitching as a result. You started getting very delirious at night and were starting to get frustrated and mean.
Saturday August 1st: Trach started creating blood in your windpipe so we had to stop the heperin. You were choking a lot of the day on that blood. Needing constant suctioning of trach filled with blood. You got some goofy meds during the day when Scott and Laura were there and started to smirk and I asked you if you farted and you started giggling. It was cool to see you happy even if it was drug induced. You forgot absolutely everything about what happened when those drugs wore off. I had to explain what was going on. It was pretty difficult. Then a mess of ppl showed up to visit you and you weren’t a fan because you didn’t remember that you were sick.
Sunday August 2nd: After tilt table and everything you were in so much pain from groin wounds where ECMO was. You were writhing in pain. Aunt Terry and Danny came to visit. Danny was having hard time seeing you because he didn’t see you in the ICU. You slept a little that night with help from meds. You learned to put your hands together. Jessica the nurse tech plays you music and you showed her how you can Nae Nae. You and like three nurses along with Dr Ito were Nae Naeing together. It was probably the best thing I’ve ever seen since this started. You slept for about two hours again that night due to drugs.
Monday August 3rd: Cindy has to head back to Chicago for a bit. This is the start of my 36- 48 hour shift with you. You had a really hard time from the start. You haven’t slept more than a couple hours combined in a few days. You start crying and getting mad because you started to realize how weak you are now and how hard communicating is now that you are unable to speak. When I would ask for breaks you were delirious and think that I hated you. You and I had to cry and hug a lot. You tried to hurt yourself a lot. You are now using the bed pan like a pro unless you are super asleep. I didn’t sleep at all. The left groin ecmo spot has started bleeding and you had to get it repacked a bunch of times. I introduced ice chips to calm you down. I unleashed a demon you are obsessed now.
Tuesday August 4th: You had a lot of panic attacks, tantrums and break downs today. You are having a hard time adjusting to reality. It’s understandable, it’s hard being strong while you’re so heart broken. You tried so hard to hurt yourself without caring. I think you have a lot of disbelief that you are going to get better and you don’t want to live like this. You’ve started to breathe better than the vent so that’s good progress. You still are so sweet sometimes still and making progress but it’s hard. I stayed awake until 10pm today so I’ve been awake for forty hours. You are still pretty upset. I love you so much though. I’m gonna keep fighting to protect you.
That’s all the further the notes went after that day Jake started remembering more and we began a system of numbers for communicating with one another. Towards the end of August Jake was strong enough to get his trach out and that’s when he discovered he wasn’t shaking just from the medications: he had sustained a pretty severe brain injury from the nearly 50 times (that we know of) Jake had to be resuscitated or brought back into normal heart rhythm. He lost all motor control, speech, muscle tone but was still cognitively my husband. We stayed at Barnes Jewish Hospital until September and then he was moved into in patient rehab before he could even pick his arms or his head up and stayed there until days before our daughter was born.
Our daughter Eden Cielo (7 months): June 2016
Jake was given a 50% chance of survival for one year even after he had remained stable on the LVAD implant. I’ve had numerous doctors tell me he is the sickest person they have ever heard of, not seen, even heard of… I’ve had some of Washington University’s finest heart surgeons tell me that they have no clue what happened to him and what our future holds. A cardiologist told me “Maybe this is just what happens when you come back from death, we’ve never had anyone make it, we’ve never had anyone live through this.” The Mayo Clinic still hasn’t figured out what happened to him. So now we live here with the lingering daunting death above us and behind us, no statistics that apply because Jake is the first to live. We have the hope of a heart transplant and several brain treatments after transplant.
Jake showing off his LVAD controller: May 2016
Jake now is on an Left Ventricular Assistive Device, an electronic pump aiding his heart, in a wheelchair: learning to walk and learning to talk all over again. But all in all a year later Jake is here, he’s my husband and a father. For now we wait, we wait and we hope that the moment of terror that lasted far too long never returns.
Jake at home one year later: June 2016