By Ali Gonzales

In my last blog post I described the crazy events of the summer of 2015 and my husbands sudden and unexpected illness. If you haven’t read it or heard our story: go back and read my first post “One Year Later: What Happened”. This post will be helpful to understanding our current situation, plus you can see cute pictures of my husband and my daughter.

I’m currently writing this post to fill people in on what we’ve been up to since Jake was discharged from the hospital on October 17th, 2015 but primarily to inform people on what our lives are like now. I often get a multitude of questions on a daily basis about what exactly do we do all day and where we are at in the process of Jake’s treatment. So hopefully you can get all of those questions answered today and if not it doesn’t bother me if you have more questions to ask. So for now, here we go:


Then: When we left rehab Jake was able to walk about 15 to 25 feet with a walker with a two person contact assist. He was still needing to be fed almost all his meals because he didn’t have control of his hands. He hadn’t used a restroom more than once in the time at rehab and when he did it took about three people to help him. He was speaking but rarely in full sentences and I had to translate most of what he said.

Now: Jake is able to walk around 350+ feet with the walker or using just my help to keep his balance. He feeds himself every single meal and in the mornings he has started to even get his breakfast ready himself. He decided about a week into being home that he was going to use the real bathroom and has not gone back since, even when he was really sick, he is able to transfer himself and is getting to the point where he requires no help at all which is a great feat in independence. Now he is able to talk on the phone even when strangers call, he manages to make it through conversations without ever having to repeat himself.

The Future: In May of 2016 therapy visits ran out and Medicaid in Missouri will not pay for any therapy visits of any kind for Jake. We have been doing speech, occupational, and physical therapy at home and have been trying to find alternative ways to pay for more therapy. We hope that after a transplant we will be able to get Jake the in patient rehab he needs and find a way of paying out of pocket for the therapy Jake will need in years to come.


Then: At Jake’s worst his heart was pumping at an ejection fraction of about 10% (normal is about 60%). Both sides of his heart failed and this is the primary reason he was so close to death. Upon leaving the hospital his right ventricle was working hard enough to sustain itself for a few years with the help of medications. His left side with the help of his heart pump had recovered to about 25% ejection fraction.

Now: We had an echo done in March of 2016 and Jake’s ejection fraction had risen to about 47%. That means the left ventricle is doing a great job of recovering and aiding the pump in distributing blood throughout his body. His right ventricle however looked about the same, hanging on but still taking on a brunt of the workload while weakened by the myocarditis. Due to the damage that still exists to his heart, we were told that he would need a heart transplant in December of 2015; however due to the severity of his illness he was not able to be listed until April 2016.

The Future: We hope that Jake will be able to be transplanted soon and be able to get at least 15 to 20 years out of his new heart or maybe he’ll be one of those crazy cases that survives 30 + years on a transplanted heart!


Then: When Jake first woke up from his 6 week coma we had no idea that he had a brain injury but as time progressed and he had no control over his body: more and more was revealed to us. CT Scans were unable to detect the damage that occurred and we are unable to get more information until after Jake is transplanted because while he has the LVAD he cannot have an MRI. The brain damage presents of the symptoms of a hypoxic brain injury: he lost all motor control, gross & fine motor skills were gone, he lost he ability to speak, control any extremities, had tremors and ataxic shaking throughout his body, and lastly he lost control of his balance completely. A hypoxic brain injury occurs when there is a partial interruption of oxygen to a specific part of the brain. This most likely occurred during the 50+ times Jake had to be shocked and his heart restarted and most likely effected his cerebral region of the brain. However, he was still cognitively intact.

Now: Most of Jake’s ataxic shaking is gone, he still has some slight residual shaking that he takes medication to control. He is able to have longer conversations and has regained some control of his tongue, so pronouncing words is getting easier. He still has a slur and different quality to his voice but therapists have said it would take years to regain his speech.  His balance is increasing he could barely sit on all fours when he left rehab and now he can crawl, stand on his knees and has just begun to do push ups. Walking is still very difficult, he says he feels like he is walking on a boat in rough waters. He has regained the ability to write and read it just takes much longer than prior to the illness. But overall his recovery is more than what we could have envisioned.

The Future: Post transplant we will be able to get an MRI of Jake’s brain to see exactly what occurred and what was affected. Jake will be able to receive much more intensive physical therapy treatments, such as swimming, hydro therapy, light gait, electric stimulation to his muscles and hopefully some new technologies. We are hopeful that post transplant Jake will be able to receive some non invasive brain treatments as well, one primarily being CN-NIMN to regain control of his balance. We hope that Jake one day will be able to be able to get around on his own and hopefully recover from his brain injury and walk independently.


Then: When Jake got sick he worked for a fantastic grant program at the University of Missouri, he was actually one week away from being classified a a full time-benefits holding employee of the university system. I was working full time at an online mortgage company, Veterans United. We both loved our jobs. When Jake was transferred to St Louis I was put on a leave of absence from work and when Jake was in the hospital his paperwork for full time employment was stalled. Our employers were FANTASTIC during this all: they visited, checked in, brought food, donated money, sent cards, etc. However, when we realized that Jake would not be able to work he was unable to written into the grant at his work so, he lost his position. I was hopeful for awhile that I would be able to return to work but after having Eden and realizing Jake’s needs, I knew it would not be possible so my employer had to terminate my position.

Now: My mom was gracious to continue to live with us and help me care for Eden. Jake and I at this time cannot work, most of our days are filled with doctors appointments, working out, therapy, caring for Eden and calling insurance companies and transplant hospitals. I can honestly say I have never worked more in my life, I am lucky if I can get a shower in every week and more than four hours of sleep in a night. And Jake, Jake works out harder and longer than anyone I know, getting better and getting stronger is his full time job. Unfortunately, insurance has repeatedly refused to pay for in home care for Jake as we would need it. They have told us that we instead could opt for a nursing home option, which would mean Jake would have to live alone at a facility in St Louis which we did not want at all.

The Future: The ultimate goal is for me to be able to stay at home with Jake and Eden as long as possible. Right now I can’t afford to work, what I would pay for a full time in home nurse and a day care would be about three times more than what I could make any how. I want to stay home and be able to give Jake the proper rehab he needs to get stronger so that within a year or two he is able to return to work. If he doesn’t continue to to have the ability to be pushed physically then, he will only physically decline and never be able to return. I do realize that I will most likely have to work from home very soon in order to support my family.


Then: When we got home from the hospital I was nine months pregnant. Eden was due on October 27th, so we had about a week to settle in and then I was induced the evening of the 28th. Eden was born around 8am on the 29th of October. 6lbs 8oz, 20.5 inches long.

Now: Eden is now eight months old. She is hyper to say the least. She is standing, crawling, trying to talk and getting into everything. She is a hot head but oh so sweet at the same time. She loves dancing and laughing and thinks that her family is hilarious. Eden is a ray of sunlight in what can be very mundane repetitive days.

The Future: Eden has been healthy, on track and happy for the most part since the day she was born. We hope that Eden will remain to be all these things and more as she grows older. I hope that both Jake and I both see her grow up and that all this sickness and being in and out of hospital doesn’t interrupt her being a child and seeing wonder in this world.


Then: When we left the hospital Jake’s heart showed promise of recovery and we hoped that he would be able to just get the pump (LVAD) removed from his body and continue with his own heart. In December we found out this would not be the case, that Jake would only be getting the pump out if a new donated heart was going in. He was far to weak and sick at that time in December to be listed for a heart transplant.

Now: Jake was officially listed for transplant at the end of April 2016. He is currently listed at Barnes Jewish Hospital in St Louis, Missouri as status 1B, second priority for a heart. He is about 25th down on the list in his blood type (A) and this current center transplants about 30-35 people total per year in all blood types. So at this current rate it will be closer to 2018 when Jake is transplanted if we stay here in Missouri. We have been speaking to other transplant centers around the country in attempts to see if they would be willing to do his heart transplant: since they have much shorter wait times. We will be taking trips to the University of Maryland transplant center in Baltimore in the upcoming weeks as well as the Baylor Medical Center in Dallas in hopes to convince them to take on Jake as a patient. However, they have been hesitient because of Jake’s current neurological issues.

The Future: We are hoping that one of the two centers we will visit this summer will take Jake as a patient and complete his heart transplant within the calendar year. Jake will then adjust to living life as a transplant patient. He will start on anti-rejection medications and hopefully his new heart will take to his body and beat as his own. Post transplant we will be able to start intensive therapy for his brain injury, unfortunately none of those therapies can be performed prior to a heart transplant. We hope that the transplant will not only be a start to Jake’s mobility and independence but also the start to a second chance at life.


Then: Jake and I worked 40-55 hours a week each leading up to his sickness. We had great jobs, we saved and were paying down our student loans, allocating $1,000 bucks a month to principal on our loans and about the same towards our savings account. We had been very poor during college and saving is easy when you make more money than you ever thought you would. I was able to be paid until early January due to maternity leave, paid leave, vacation time and the overwhelming generosity of my employer. After he got sick we exhausted our savings and gofundme, paying thousands and thousands of dollars for adaptations to our home and equipment for Jake and not to mention unending hospital bills.

Now: Ugh now this is rough if I am going to be honest. Jake is fully disabled and through social security we receive $763 per month: that is our total income. We are able to receive WIC and food stamps in addition to that. Our rent runs $750 per month, utilities are about $250. I have to pay out of pocket for my COBRA insurance which runs about $500 per month. Both Jake and Eden are on government insurance that I do not qualify for at this time. I put Jake and my student loans into forbearance for medical hardship but they are about due and payments will start again (we have around $110,000 in student loan debt now that interested has been compounding). It will take a couple years for his loans to be forgiven (for disability) and we have to make payments in the meantime. The hospital Jake was transferred to when he was dying does not have a contract with Jake’s primary insurance plan and for that reason most of Jake’s hospital bills were not covered. We have been able to get the surgeries covered but things like physicians, labs, tests, x-rays, CTs, medications, etc were not covered and even with appeals to the insurance company will not be covered and I have been attempting to settle then, right now we owe close to $12,000 to Washington University Physicians and BJC Healthcare. Jake insurance company would also not pay for his life flight because it was not a part of the care plan :the bill was for $55,000. The insurance company after a year of fighting has decided to pay half of what is due to the life flight company and they are collecting the rest from us about $22,000. Neither one of Jakes insurances will cover the dressing supplies that he needs for his LVAD so I pay out of pocket for those every month which is about $100 and I pay around the same amount for medications per month as well.  We have also had to front the cost for all of Jake’s medical equipment like his hospital bed, mattress, lift chair etc. As you can tell we are running out of money quick and are flying blind when it comes to money at this point. We aren’t worried, money is really the least of our worries but, unfortunately it is necessary. We have been blessed with the generosity of others through garage sales and donations over the past year.

The Future: We are attempting to get transferred to a different transplant center so that we can move in with family and not have to worry about as many bills and focus on either getting out of debt or possibly look into bankruptcy which is usually the outcome for people who experience medical tragedies like us. We aren’t worried, God is in control and we fortunately have family that will try to help us as much as they can. We will be flying to Maryland as well as Texas in the next month and paying out of pocket for evaluations for transplant (as Jake’s insurance will not cover it) which will run close to a few thousand for each trip. We find that it will be worth it if it can get him a transplant sooner and allow us to move in with our family. After transplant we will assume the financial burden of anti-rejection medication that insurance will only cover for three years and then we will take on the five to ten thousand a month that they cost. We have a gofundme -> if you feel compelled at all to give. We have been provided for thus far and hope this can be the case in the future, we are not afraid.

While this all might sound overwhelming and hard there are good moments. We joke, we laugh, we see progress and we serve one another. Most days we don’t worry about what we are missing out on or what we can’t do, most days we enjoy, enjoy that we were given another day: a day more than we should have ever had. The future is scary, the prognosis of a heart transplant isn’t always fun to think about, but for now in the present we are here. We are all here, and that we can be thankful for.



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