While I’ve previously provided the Cliff Notes version of how I got here, I decided it was time to lay out a day-by-day outline of the two weeks my husband spent in the hospital before he ultimately passed away.
Having a large family and lots of concerned friends who lived in another part of the country and wanted (needed) to know his progress, I began posting daily updates on Facebook to let everyone know what was happening. The following are the actual daily updates from my page, edited only to protect everyone’s privacy, and they highlight the daily (sometimes hourly) emotional roller coaster ride we were on during this time.
They begin with the first post informing everyone of his heart attack and end with the announcement of his passing. Please bear with me, as this will be my longest blog post by far.
April 3, 2016
Phone is dying. Cannot respond to everyone. Next 24 hours is critical. Thank you for your prayers.
April 4, 2016
[Morning update] To everyone wondering what’s going on: It is the best case scenario in a worst case situation. My husband suffered a massive heart attack last night while we were down visiting our daughter in Palm Beach. A medical professional in the restaurant began administering CPR almost immediately and the paramedics arrived within 5 minutes. He was brought to the #1 cardiac facility in the state. He is currently in ICU. It’s going to be a long week, so please remember us in your prayers. Thank you.
[Late day update] I want to thank everyone for the thoughts, prayers and well wishes. He is on ice protocol and they have lowered his body temp to 91 degrees to preserve brain functioning. He has not been conscious since this all started, but he was trying to remove his ventilator at one point and they put him on paralyzers to prevent it. They begin a warming process tomorrow to return his body temp to normal. Today is just a waiting game. If you reach out to me and I don’t respond directly, please forgive me.
April 5, 2016
This morning around 6 a.m. the doctors will begin the process of warming his temperature to normal, a process that they expect to take about 6 hours. Then they will start decreasing his sedation and paralyzers to slowly bring him out of his coma. Within 48 to 72 hours of the start of this process, they should know more about his prognosis and next steps. Thank you all for your continued prayers.
Brief update – 4/5 evening He has pneumonia mostly in his right lung but some in his left as well and has been placed on antibiotics. It’s likely there will not be much change overall until that is addressed.
[Please know that I am operating on information overload and having difficulty processing it all clearly. My husband is usually the one I go to with this stuff… ]
April 6, 2016
[Early a.m.] My husband has been on antibiotics since last night and an x-ray was done this morning to see how his lungs look. His heart rate essentially spiked when his mom, his sister and I went to visit this morning and the nurse said he hadn’t done that all night. As it was too high (150+), she contacted the cardiologist to prescribe something to lower it. While she did that, I was alone with him in the room. So I talked to him about his “ideal” heart rate of around 100. Told him I know he wants to come back but he has to do it right and not push himself too hard. I’m going to be here. After a few minutes he settled in at 95. The nurse and EKG tech thought something might be wrong with the machine. There wasn’t. So they didn’t need to give him the meds to lower it after all. It is holding steady at 95. As you can imagine, this is a positive sign to me that he can hear me, he is trying to come back, and that “the neck still turns the head”. Please keep your prayers coming. They are yielding results.
[Late day] Been a long day with lots of ups and downs. Some of the highlights are that he is completely off drip sedatives. The CT scan and spine x-ray were finally performed and no spinal damage so his “horse collar” could come off (not sure what its proper name is…). Removing it and the subsequent gagging on the ventilator/ coughing / suctioning caused some irritability on his part which resulted in a sharp rise in BP. That was addressed and he is finally sleeping comfortably on his own. He had an EEG today but the neurologist has not yet read the test results. He still responds to us (some forehead frowning which my kids told me is because he doesn’t like my singing and wants to tell me to shut up) but sometimes with general agitation demonstrated by higher BP and heart rate which the nurse explained could be frustration because he is unable to communicate and wants to. I understand that in similar instances they often don’t expect a patient to wake sooner than 7 days after the event. I’m praying that my stubborn Greek is going to have to prove them wrong. Thank you for your continued prayers.
April 7, 2016
Gotten many inquiries about an update for my husband today. No significant changes. We definitely need continued prayers. We were in the process of creating a music playlist for his room, and at the very wise advice of a good friend who said nothing motivates him better than being “pissed off”, we are going to include some of the songs we know rile him up. Especially some of the stuff played before football practice. If you have any suggestions, let us know. Thank you for all the support.
April 8, 2016
Yesterday was a very difficult day for us. My husband still hasn’t regained consciousness and the neurologist gave us the results of his EEG. The official diagnosis is “severe anoxic encephalopathy” which is a fancy way of saying he had a period of time where his brain wasn’t getting oxygen and it is now quite damaged. Essentially the doctor believes if he ever regains consciousness he won’t be “my husband”. The kids and I aren’t convinced. Even among the nurses he has nicknames such as “feisty” and “Mr. Sassy Pants”. Bottom line is we need a really big miracle. Thank you for your support. We appreciate it.
April 9, 2016
No significant changes in his status today. It’s very difficult to be so close to the man we love and so far away at the same time. Fluctuating between strength, hope, despair, and everything in between on an hour-by-hour basis. I know everyone feels as helpless as we do. Just please keep praying…
April 10, 2016
[Early a.m.] How can I be expected to make the most important decision of my life when it’s difficult to even decide what to eat or wear? I wander around the hospital cafeteria aimlessly and end up just grabbing whatever is closest when the wandering stops. It’s like an extremely warped game of musical chairs. The cashier yesterday asked me why I grabbed a prepackaged salad when there was a fresh salad bar and my answer was a shrug and “I don’t know.” Truth was, it was too much effort to decide what to put in it, and it was easier to have had the decision made by someone else. My brain cells are on overload and close to a shut down; horribly ironic given the situation.
Whenever I leave the hospital to take a shower or get some “rest”, it is with much guilt because I know if the situation were reversed, my husband would not leave my bedside even for a moment. But I try to balance being strong for him with being strong for my family and sometimes a small recharge is necessary to keep me going. In the pre-flight instructions, you are instructed to put on your own oxygen mask before you help those around you. What good are you to every else if you run yourself to the ground? Every time I take a “break”, I am preparing myself to get punched around the next time the bell rings.
He is a very private person. We are so close because we share everything with each other, often to the exclusion of sharing it with anyone else. We know our thoughts and feelings are safe with one another. Since I don’t have him to lean on right now, I turn here to be propped up, toweled off, and sent back into the ring. My posts here serve a threefold purpose: 1. The information is provided to answer everyone’s questions and to make sure you all get the same information, not some warped and watered down version of the facts, and it is disseminated simultaneously to a large group of family and friends. 2. The more prayers that are said, the better. Every post seems to bring another prayer or two (or two thousand..) And 3. Your replies and words of encouragement keep me going to the next round. He would very likely be upset with me right now for putting all this stuff out there… But I’m willing to risk it. In fact, I’m hoping for it.
Everyone keeps asking what they can do, and I honestly don’t know. My cousin is here with me because she knew if she asked, I would have the same answer. So she said simply, “I am coming to you. What airport?” Her presence has been an immense blessing. Upon arriving, her first words to me were “you’re exhausted and you look terrible”. Without fanfare, she simply steps up and does what needs to be done. Yesterday, that included taking me by the hand, forcing me to get some “real” sleep and helping me clean the 1/1 apartment of our oldest daughter who graciously opened it to 6 extra people, as well as a cat and a dog at its max. I understand the feelings of helplessness and don’t wish to contribute to them. But the truth is… I just can’t think of anything except prayer. And to check in on my mom, and my husband’s family who are traveling back to Massachusetts this morning. Being so far away from here is going to be difficult, especially for his mom. She has lost one son already, and feels she is “cursed”.
We have not given up hope. Not by a long shot. We feel there are too many small miracles that brought us to this point for it to be the end – a locked bathroom door, a dentist dining with his wife, and finding ourselves in the ambulance zone of the best cardiac facility in the state because we decided we finally HAD to see our daughter for her birthday nearly a month ago. These words are simply those of a woman who, in the quiet early morning, was sitting in her corner getting a pep talk and a rubdown.
[Late Evening post by my cousin who was visiting] A very emotional day today … A lot of ups and downs. Cheri is an amazing woman . I am mentally and physically spent and I’ve only been here for 36 hours. Cheri has been doing this all week. She and her children are amazing and they will do this together. They have an amazing love that I am so glad to witness . Continue the prayers everyone it helps them to know you are all there with them.
[Update 4/10/16 – Very, very late (or 4/11/16 very, very early)] Today has been an emotional roller coaster with all the twists, turns, dips and climbs. And it ended the same way, leaving me on a high from the ride…
When my cousin and I first got to the hospital, we were told that my husband had opened his eyes “on command” overnight. P, my ever practical, highly cynical cousin/friend wasn’t buying it; I swear I could hear her eyes roll. She felt they were reaching (and had her suspicions that I have been slightly delusional in my assessment of the situation).
They turned off A’s sedation (one with “a fast acting half-life” – I’m becoming quite knowledgeable about this medical terminology, by the way) and asked me to ask him to open his eyes. Within several minutes, he did! He struggled… His eyebrows would raise and then his eyes would open. His gaze is still unfixed, but he opened his eyes that way several times. Then as P stood by his bed, I made some phone calls. As I did, he would turn his head to follow my voice around the room. After a short while, he became tired and stressed and they turned up the sedation to allow him to rest. But by the time it was over, P was a believer.
Fast forward several hours later. We left the room to eat lunch, and upon our return found the nurse visibly shaken. She said “immediately” after we left the room, everything spiked – his temperature, his BP, his heart rate – and it took all they had to fight to bring it down. At its highest point, his blood pressure had been 229/112. While they continued to hustle and rush around me to administer meds and make quick consultations, P spoke to the nurse and then said to me quietly but firmly “call the kids and get them here now!”
While she drove to Orlando to pick up the youngest two who had gone home for a bit of normalcy, I stayed by my husband’s bedside, wiping him down with wet cloths, singing, and talking to him. When the nurses returned in a little while to give him yet another dose of something, they said “Hmmm… Look at that! I think we should wait on this… He doesn’t need it now.”
Then late this evening, his nurse came in and said she wanted to take him off the sedation again since he had settled down. My two younger children joined me by his bedside while he repeatedly opened his eyes because we asked him to. We would tell him to close them, and then open really big again. We joked with him that we were having him perform parlor tricks. But the most exciting thing was when he squeezed our hands, separately and at different times. As you can imagine, it was like Christmas morning in his room tonight.
The nurse spoke with us a bit later and said, “God isn’t finished with him yet. Your husband still has work to do…”
Thank you again for all your prayers… They are obviously doing the trick! We have a long road ahead, but at least we’re still traveling. Much love…
April 11, 2016
[Quick (and somewhat comical) a.m. update] After last night’s exciting progress, they have taken my husband off his sedation this morning. He has made many “mini” strides that are actually huge leaps. He has been squeezing both hands, opening his eyes, moving his legs… All on command (as well as on his own).
The nurses told me to keep asking him if he remembered the heart attack and to slowly orient him to his surroundings. So I asked him if he remembered it and he shook his head no. I asked him if he remembered me and he shook his head no. I told him I was his wife and asked him if he thought he had done good. He gave me a thumbs up. Lol. I’ll take it.
[Evening update] Our family has been overwhelmed by the outpouring of support for A’s journey. It is absolutely incredible how many people have been praying for us and how times we’ve been told how appreciative everyone is of his updates.
As you may know, I come from a rather large extended family (an understatement) and my husband comes from an extensive network of Family and friends, as well (a la My Big Fat Greek Wedding – trust me… It’s not just a movie!). While there is great support in such networks, there is also the “danger” of information being diluted or altered (remember playing Operator as a child?), or some members not getting the message at all. I chose to start these updates to make sure everyone got the same information directly from the source at the same time.
Although I’m responding to messages and texts and phone calls, my communication has been mainly reactionary and highly sporadic. If I haven’t answered yet, know I hope to find a quiet moment at some point in the future to do so, and in the meantime that each word of encouragement brings me strength. For those of you who consider me courageous, know it is only through your help that I am able to maintain some semblance of strength, real or not.
Understand, as well, that these ramblings are cathartic. You are all stand-ins for my husband, my confidante, my best friend. Without him here to talk me off the ledge, I rely on you all to do so. (Forgive me if this is unfair; know it is my reality.) Each message seems to come at the perfect time.
These past two days have been incredibly uplifting. A was off his sedatives for about 4 hours today and “he” shined through in ways you can’t imagine. The parts that make him him are quite evident. Despite having some understandable memory issues (of which we do not yet know the extent) and being unable to speak, he is clearly communicating. From smiles to shrugs to a look that clearly said “Seriously ?!”, he is quite articulate. He is even “flirting” with me, winking and giving me a thumbs up.
He still has pneumonia which is causing some complications, and he exhausted himself this morning but refused to rest and had to be sedated again to alleviate the strain on his heart and lungs. We will not know the extent of his cognitive functioning or potential memory loss for awhile. But everything we’ve seen has been incredibly positive. And we cannot thank you all enough for the prayers and support.
April 12, 2016
[Brief Mid-day Update] My husband was off sedation for almost 4 hours yesterday, and his personality really shined through. But he seems to have exhausted himself with the effort and yesterday afternoon and today he has mostly been resting.
We have been told that they have no major concerns with his heart or neurological functioning at this point (yay!), but he is becoming “vent dependent” and is in the countdown to the necessity of a tracheotomy. They cannot keep the breathing tube in longer than 2 weeks. It’s comforting to learn that a trache is reversible, but as I discussed with the kids, if it IS permanent and he has to talk like a robot for the remainder of his life, they can tease him and he can deal with it…
So his lungs are the focus today. Keep the prayers coming. They have definitely worked so far and I’m confident they will continue to do so.
April 13, 2016
[Very early morning update] The Facts
So many people have contacted me individually and asked similar questions that I felt it was time to provide the timeline of events that led us here and where we now stand:
On Sunday, April 3rd, we drove to South Florida (from the Orlando area, 2 hours away) to visit with our oldest daughter to celebrate her birthday which was last month. We spent the day together putzing around Jupiter and Palm Beach Gardens, our old stomping grounds, and ended up at the restaurant where our daughter is the assistant manager. We were waiting for her to get off work so we could go to dinner with her and her boyfriend.
Around 7:30 or so, my husband got up to go to the men’s room and returned a few minutes later saying it had been locked. Within 30 seconds of his return to the table, he “froze”… That’s the best way I can describe it. He locked up sitting up in his chair and was unresponsive. I jumped up, yelled at our daughter across the room to call 911 and pulled him from the chair to the floor where I (vainly) attempted to remember my CPR training of years ago. Less than a minute after that, a diner (we later learned he was a dentist who, along with his wife, almost didn’t stay for dinner because the restaurant was closing shortly after their arrival) joined me and took over, instructing me to breathe for him while he did compressions. The ambulance arrived within 5 minutes of the 911 call, he was “shocked” and intubated in the field, and brought to the #1 cardiac facility in the state. He had lost oxygen for an unspecified amount of time and was later diagnosed with “severe anoxic encephalopathy”, causing the neurologist to give him a prognosis of “very poor chance of meaningful recovery”.
They rushed him through the ER to the “Cath Lab” where they found a main artery (left ventricle, as I recall, but that conversation seems a lifetime ago) 95% blocked. They put a balloon through it and put in a stent. There was another, smaller vessel that the doctor also tried to clear, but it was 100% blocked, and he said “after an hour of trying, I said ‘screw it’ and decided to forget the dead one to save the dying one”. We have since learned that the dead vessel supplied blood to the bottom of the heart, but it should not affect his heart functioning. (We have also learned that A does indeed have a “big heart”, roughly the size of a fist-and-a-half. Not enlarged, just big. “The heart of an NBA player”, which I’m sure he will brag about for years to come.)
They turned him into an “ice cube” (that’s literally what they call them) for 24 hours to preserve brain functioning while they let the heart rest. His temperature was lowered to 93 degrees and closely monitored. He was in a collar / brace like the ones that are put on accident victims, as there was a question of whether or not he hit his head too hard on the restaurant floor when I hefted him out of the chair – another time of great guilt for me wondering if I “broke” him. Apparently his skull really is quite thick. I’m fairly sure you know the “rest of the story” from there.
The only warning he had was a flutter for a few weeks, which he attributed to stress / anxiety. If he had any other symptoms, he certainly didn’t tell me about them. And he didn’t complain about anything at all that day. In fact, he had told me that he had a good feeling that day that “something good” was going to happen, and likened his mood to the feeling you get at the top of a roller coaster. (It has most definitely been a roller coaster, but I’ve been the one on the ride!)
My son, the statistician, has calculated the odds of him surviving that type of heart attack combined with the odds of him coming out of his coma without significant neurological impairment and determined that he had only a .72% chance of having the recovery he has. (Less than 1%… Just let that sink in.). He told his father that he “had a better chance of winning the Hunger Games twice than surviving this heart attack”. We are truly blessed.
Because we are so far from home, I have been staying with our oldest daughter, sleeping on a slowly leaking air mattress (or her couch depending upon how many others are also here), with a few nights spent in the hospital when I was afraid to leave, and a few nights in my cousin’s hotel room when she dragged me away. I got my first real significant sleep a few nights ago when I feel my husband finally turned a corner. It was the first time that I didn’t feel guilty leaving.
As for his cognitive functioning, “Dr. G” (our son) has been researching anoxia and performing assessments on his father whenever he can. From what we can tell, and what he has communicated to us, he seems to remember a great deal except the day of the actual event (the day I have mentally been referring to as The Day the World Stopped, Along with My Husband’s Heart). Anything outside the hospital almost ceased to exist for me, and it’s as if I’ve been in a cave. I’m starting to come out now, blinking into the light and slowly will reorient myself to my new existence. And as long as my big lug of a husband is by my side, it’s a reality I can handle. As I said to my husband at his bedside while I begged him to return to me, “We haven’t had an easy life, but it has been a good one.”
As of yesterday (4/12), it is still his lungs we’re waiting on, and he will likely have a great deal of rehab following the hospital stay, as well as some obvious lifestyle changes to make (mainly diet, as he is still very physically active). But he has defied the odds, and clearly affected the lives of the nursing staff who have been coming by his room in droves since hearing he has awakened. They have all been rooting for him, and seem thrilled (and awed) at where he is compared to where he had been. And they seem captivated by our personal story, amazed at how long we’ve been together.
So he still has work ahead of him, but thankfully, A has never been afraid of work.
[Brief a.m. Update] A did well overnight, but today brings the challenges of “wet lungs” which need to be treated with high dose diuretics, and the first signs of some infections which will now require “contact lockdown”, meaning all visitors must wear a mask and gown. He will continue to be on antibiotics along with everything else, as well.
Another day, another hurdle. I’m looking at this as a marathon, not a sprint. But it is very, very difficult. I just want to take my man home…
April 14, 2016
[Morning update] A had a rough overnight from what the nurses tell me. His infections have caused a slight fever and his heart rate and BP were elevated. He just “refused” to rest. We played a horrible game of charades yesterday with him becoming increasingly frustrated because I couldn’t figure out what he was trying to tell me. He kept pointing to himself and to me and then miming as if he were writing on paper. I finally blurted out “are you asking me for a divorce?” He rolled his eyes and threw his head back onto the pillow. (Clearly that wasn’t right…). It took awhile but I finally “won” when I realized he was trying to tell me to sign papers so he could get off the ventilator. I told him he was putting me in a difficult position because I wasn’t going to jeopardize his health for his comfort. The nurse finally made it clear that unless he was in an end of life situation, the tube had to stay in. She pointedly asked him “are you ready to die?” When he indicated that he wasn’t, she told him it stayed in then. But it really did a number on his psyche. He got so bummed out…
So they increased his meds again, just so he would relax, and we’ll try again today to see if he can breathe on his own for any extended period of time.
Meanwhile, I drove home last night to bring my two youngest back and am currently stuck about 2/3 back to the hospital. Stopped for a quick bite to eat on the road, got back to my car and it won’t stay started. AAA guy said it’s likely a computer issue (the security system won’t allow it to stay running so it can’t be stolen or some such thing) and will need to be fixed by the dealership. So I’m getting it towed to the hospital and will figure it out from there. Just another hurdle…
Thank you for your continued prayers.
[Afternoon update] Really rough day today. My husband has not been conscious at all save one brief moment where he struggled to open his eyes for me. He is on the max of one sedative but they’ve stopped the other for now. There are various issues at work and a plethora of options to play with but he may have gall bladder issues (and potentially liver and/or kidneys, as well) in addition to the heart and lungs. His heart rate is high and his rhythm is funky and they need to regulate it, which may include shocking it if the chemicals don’t work.
(Car was towed to the parking lot of the hospital until I can deal with that…)
April 15, 2016
Yesterday was rough and I couldn’t help but wonder why my husband needed to go through another setback. His white blood cell count was elevated, as was almost every vital statistic, and they couldn’t be controlled with meds. They were concerned about gall bladder functioning and gave him a CT scan of his stomach, so they did one of his head at the same time. Neither showed anything alarming (thank goodness). But he was lethargic and unresponsive even when off sedation. He did open his eyes a few times when I asked him to, but even that seemed a great struggle for him. Seeing him like that now after seeing the “real” him only the day before was disheartening and almost worse than the uncertainty last week.
I stayed at the hospital last night (and they found me a better recliner than the “dinosaur” they presented me with last week). Whether it was pure exhaustion or the comfort of knowing I would be right here if something happened, I actually got some sleep. It was snippets of an hour or two, but it was sleep nonetheless. Sleep and hydration have been my nemeses this week. Meanwhile my husband is bring pumped full of fluids, and is probably chomping at the bit because he hates sleeping too long.
We still await many test results, including some cultures that take several days to receive back. But I’m in a better place today than I was yesterday. You have no idea how much I appreciate the continued prayers. I do believe that are working, and when he finally leaves this place on his own two feet, it will truly be a miracle..
April 16, 2016
[Early Morning Update] (Can you believe this is the dawn of Day 14…?) There are probably many of you waiting impatiently for an update, and honestly I keep waiting for something “important” to say. It has been pretty much status quo here with my husband seeming to make some headway, then having some setback. He is fighting off some as yet undetermined infection which is causing a fever. The fever (and I’m assuming the toll it is taking on his body) is causing him to be lethargic, even without sedation. It is very disheartening when only a few days ago, we were communicating, if poorly. I’ll gladly take his frustration at me not being able to understand his mimes to this inactivity…
Something the nurse (one we’d never had before) said to me late yesterday afternoon really struck me wrong. When I complained to her that he wasn’t being taken off sedation enough (or long enough when he was), she said simply “we’re trying to keep him comfortable”. My daughter and I left the hospital so I could shower (she insisted I smelled like celery), and that phrase kept running through my mind. While I don’t want him to be uncomfortable, I also don’t them to baby him. He’ll never get better that way; it’s not good for his physical or mental state.
So when we got back here yesterday evening, I went all mama bear on the night nurse (also one we had not had previously). I told her that while I obviously didn’t want to jeopardize his health, I did NOT like his regression and wanted to know how he could have gone so far backwards. I asked that his sedation be turned down so that he wasn’t so comatose, and said I would like to find out the doctors’ treatment plan from here. I didn’t make accusations, but I made it clear that things weren’t progressing, had in fact regressed, and they needed to find out why. Now if you know me well, you know this is so not my style. Heck, you probably get that vibe even if you don’t know me well. After my talk with the nurse, My oldest child said “Mom, you don’t get that way often, but when you do… “. I have been trying to allow the medical staff to do what they are trained to do, and been quite comfortable allowing it knowing that they were being aggressive in his care. But I feel that somewhere in the past two days, they have become more complacent and that’s not what I want, or what my husband needs.
So while my protector lies in that bed trying to fight his way back, I have to be his champion. Pray that I can be a good one…
April 17, 2016
[Final Update] The decision has been taken from our hands. After a courageous battle these past two weeks, A lost his struggle around 1:45 a.m. this morning. He had maintained an extremely high fever which had reached 107.7 and continued to climb before his body simply gave out. It was a very quick passing at the end, and we feel that he wanted to give us this one final gift. He literally protected us to his dying breath.
Thank you for all the support you’ve shown for our family. Please continue to pray for us. We have lost an amazing man…
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