Kate’s Story

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In June of 2020, Craig twisted his knee while playing in the pool with our son. Being a “typical” man, he shrugged it off, took some Tylenol and ignored it. A week went by and he was still in pain, so we decided he’d better have it looked at. He headed to the local walk-in clinic and after x-rays discovered nothing, it was suggested he follow up with an orthopedic doctor. We couldn’t get in to see our regular orthopedic right away, so It was about 2 weeks until we were able to see the physician’s assistant.

The initial appointment went as expected, he ordered a second x-ray and an MRI of the knee, both were completed on the spot. The images showed no sign of any tears or damage, so it was determined that it was most likely strained and he ordered physical therapy for a course of 6 weeks. We were able to schedule right away, but couldn’t begin for another week or so.

By the time Craig attended 2 sessions of PT, we’re now in the beginning of August. At this point, his knee no longer hurt, which was great news. He did however, begin to develop numbness, and tingling in his opposite side hip, with shooting pain down the leg. He thought it was a side effect of the PT. Craig was a sturdy man, of solid stature who worked a fairly sedentary job, so we chocked it up to him being “out of shape” and not used to the level of physicality. These new symptoms went on for another a week, until the numbness started to affect his gait. We called the orthopedic and scheduled a follow up. At this follow up, we told the physician’s assistant what was happening. He conducted a physical exam (if you’d even call it that), by poking the hip with his index finger once and asking Craig to straighten and bend his knee once. No additional images or examination was done. He asked no questions. He simply confirmed our thoughts on Craig’s level of physical fitness, amended the physical therapy order to help strengthen the now weak side and sent us on our way with no follow up to schedule.

By the third week of September, the numbness had gotten worse, Craig would stumble & lose his balance several times a day. Craig continued PT, reporting to his therapist the numbness and tingling and was assured it was his body adjusting.

Craig and I took an impromptu trip to Las Vegas for our wedding anniversary the end of September. He struggled to walk more than 20 feet or so at a time and would have to sit frequently to rest. His leg damn near gave out on him on our way to our anniversary dinner. He was never a complainer, so to hear him tell me he felt weak was strange. I remember the look on his face while sitting at breakfast one morning. He just looked so damn uncomfortable.

We called the orthopedic office after we got home, and he just extended the PT order again without seeing him. So, diligently, Craig continued to go to PT, hoping this would get better. October came and Craig began to develop severe stabbing pain in his lower back, right about the kidney area. It was so bad, it would wake him at night. He would get up in the middle of the night and go take a hot shower, saying the heat beating on it was the only time he felt relief. We tried everything from Icy hot patches, to arthritis relief medications to help the pain. We had an adjustable bed and he tried sleeping in every position imaginable as I researched ways to alleviate back pain, but nothing seemed to help. His leg had become incredibly weak and was he was experiencing numbness through most of the extremity. It was at this point that he had fallen down the stairs a few times because his leg would just simply be numb and give out. Halloween came and his leg was so numb and weak that he followed the kids and I in the car as we walked the neighborhood to trick or treat.

November 11th Craig called me while I was at work, He was supposed to have had therapy that day. “I can’t get off the couch” he said. I asked him to explain and he told me that he had no feeling from the waist down. I left work and hurried home to assess the situation. I arrived shortly after 5:30pm and sure enough, Craig was sitting on the couch, and unable to stand. He had attempted to get up tp get ready for PT when he discovered the change to his condition. I called the on-call doctor and I began to explain our situation. Without hearing Craig’s full history on this issue, he stopped me and told me to call an ambulance immediately. This created a panic in me. He explained that it could be neurological and time was of the essence. Paramedics came and took Craig, who was in surprisingly good spirits. He was fully cognitive and functional, with the exception of mobility and continence. My children watched out the living room window as the EMS loaded him into the ambulance. That was the last night he was ever home.

I followed the ambulance to the hospital but because of COVID restrictions, I couldn’t be with him until after he was triaged. It took three and a half hours for him to get registered, where he sat on a gurney in the E.R. hallway He also started to violently vomit. Craig was a fairly private person, and certainly would have my head for sharing the explicit details of this with the world, but that poor man sat in that hallway as a spectacle for what must have felt like an eternity, alone. Finally when I was able to join him, they subjected him to a battery of invasive tests. Which was fine, we just wanted answers. He had a COVID test, a contrast MRI, a spinal tap, a neurological evaluation, a full blood panel, and a second MRI, among a myriad of other examinations by several doctors of varying disciplines. By 6am, they still didn’t know what was wrong, so they admitted him and sent me home because visiting hours didn’t start till 10. I drove home, showered, shoved food in my face, packed him a bag and back to the hospital I went.

When I arrived, Craig was meeting with a team of doctors who were taking over his case. One of which was an IR doctor (interventional radiology). The said after reviewing the tests, they think they knew what was happening, but were going to do exploratory surgery to confirm the diagnosis. On the 13th, Craig had spinal surgery, which confirmed that he was suffering from something known as an aetriovescular fistula. That is a fancy way of saying a group of blood vessels had become knotted and was compressing his spinal cord. This is usually a birth defect not detected until someone is in their senior years as it is usually discovered along with a diagnosis of arthritis. The IR doctor did say that the PA should have ordered imagining to rule out siatica which would have most likely found this and could have prevented the severity.

The fix was simple, another surgery, where they inject a surgical grade adhesive into the “malfunctioning” vessels to dam them up. This would force blood flow to reroute and would alleviate the pressure on the spinal column. So on November 16th, Craig underwent a second spinal procedure. The surgery was deemed a success, he even had minor regained sensation in his toes in post op. We were all highly optimistic with the prognosis. We met with the IR doctor again the next morning who explained that due to the prolonged loss of sensation and muscle tone, rehab would be necessary to regain incontinence control and strength for walking. It was determined that an 8 week stay would be sufficient and we were expecting a 95% recovery. That would have put Craig home the week before Christmas.  Craig was to stay in the hospital for 3 more days, then would be transferred. We were relieved that this while scary, had been relatively easy to fix. In the time following the surgery, there was an order in place for compression leg cuffs that ran on an automated schedule. They are often used to help prevent blood clots as they squeeze the legs to keep blood flowing. They were removed the morning after the surgery for a sponge bath, but never replaced. When I questioned the aide about it, she told me that she’d send the nurse in. Visiting hours ended that day and I left without them being replaced. 

The day of transfer came, with discharge papers being submitted at 11am. Craig was due for his next round of medication which included blood thinners at 1pm and because discharge was complete, that dose was never administered. He was picked up by transport at 2pm but by time he was registered and situated at the rehab hospital, shift change happened, so he did not receive dinner or a second dose of medication. It was after 9:30pm when they finally got him medicine and something to eat. That was Saturday.

Monday he attended his first PT & OT. They got him in a chair lift and had him standing supported. This was wildly exciting as he hadn’t stood up in over 2 weeks. Unfortunately because of COVID restrictions, I couldn’t be with him while at rehab. Their policies were far more strict than the hospital, where they only had scheduled visits. I called to schedule time, but the soonest I could see him would have been Wednesday, his birthday. I also scheduled a second visit for that Thursday, as it was Thanksgiving. We spoke on the phone that night, celebrating the milestone. I missed him extra that night, making mention of it to him and how lonely the bed had felt as it had been awhile since he’d been home. After we hung up, I needed an outlet so I turned on the one movie guarantee to make me cry, “P.S. I Love you”, and cried myself to sleep. (in hindsight, if this isn’t foreshadowing, I don’t know what is. If you’re not familiar with the plot of the movie, go look it up).

Tuesday the 24th. Craig and I text back and forth a bit in the morning while I’m settling in at work, I apologize for being so emotional and he calms me, like always, telling me he loves me and we agree to talk later after his physical therapy. About an hour goes by and I get a phone call from the rehab hospital, it’s the attending doctor who calmly tells me that I need to go to the hospital because Craig is being taken there. He was so calm that it took a minute for the severity to register. Craig’s heart had stopped. EMS was working to get it started so they could transport him.

The next 40 minutes are blurry, I remember racing out of work, and trying to navigate to an unfamiliar hospital while trying to call my brother-in-law. I get to the E.R. and the desk doesn’t know what I’m talking about. I call the doctor, apparently his heart stopped again on the way. I had beat him there. After several frantic phone calls and about 20 minutes, they usher me to a family waiting room. I sat in that room for what felt like an eternity, all of the possibilities racing through my mind but I was still holding out hope. A young 20 something social worker came in to try and comfort me. I’m sure she tried her best but every word out of her mouth in that moment was wrong in every way. It felt detached and scripted and “green” for lack of better term.

They finally tell me I can see him, but no one prepared me for what I was going to see. This social worker kept asking for someone to get me a chair, I didn’t want a chair. All I remember is yelling at her to stop offering the goddamn chair. The doctor comes out from behind the curtain in the trauma bay, they push it open behind her. I can see her mouth moving but don’t immediately hear her words, it sounds like I’m underwater. All I see and hear is Craig. Naked, intubated, on a back board, with a neck collar and a chest compression machine violently forcing his body to perform in a way it doesn’t want to. If you’ve never seen a chest compression machine in action, I do not recommend. It is a mechanical CPR and is horrid to watch being used on a loved one. There are probably 15 or so nurses all around, yelling various things, passing supplies to one another, working diligently to save my husband’s life. It was like a scene from Grey’s Anatomy. I scream and fall to the floor. The doctor repeats herself, telling me that they’ve exhausted all options and even if they get his heart beating again, there will be no brain activity. His brain has been without oxygen for over 30 minutes. I can’t breathe… I can’t think but In a panic I hear myself tell her to try again as I crawl to the foot of his bed, clinging onto his foot. I hugged his leg tightly, begging him to come back to me, but it was no use. “10:43, time of death”. Those word ring out in the air like a church bell.

Ultimately, we ended up having an autopsy done and discovered that he had died from a pulmonary embolism. It states in the report that the clot was “a direct result of post operative care”. What I didn’t learn until after his death was that there were several instances of negligence. While in the hospital, he went over 48 hours without the compression cuffs and they never came to turn him or low impact stretch him as he was completely bed bound. In addition to that, they refused to catheterize him. He was numb and incontinent and instead decided to “bladder train” him after surgery, so they would straight Cath him, which is like tapping a keg, and they were doing that every 2 hours. this caused a wound on him and it took 2 days for the wound doctor to look at it. She never prescribed any type of remedy for the pain or potential infection. All in all he missed at least 2 doses of blood thinning medication and the dosage based on his height and weight is questionable.

For those of you wondering, I did pursue a wrongful death/medical negligence claim. I spent over a year and lots of money to have several lawyers look at our standings. Ultimately it was determined that enough points of intervention occurred that our case against hospital lawyers wasn’t strong enough to consider taking to trial. So ultimately, we did not win.

The aftermath immediately following was it’s own series of experiences and learning moments. So many things happened that first year. Craig didn’t have a will, so navigating probate was a rollercoaster all its own. My head was spinning. Of course, when it rains… it pours. The beautiful home we shared was solely in Craig’s name. I did not qualify for mortgage assumption and could not afford it on my own, so less than 6 months after Craig’s death, I moved my children and myself out of the family home, letting the bank take ownership of the property. That was one of the hardest decisions I’ve ever had to make. In addition to that, work conditions at my job had become hostile, as I was dealing with a retaliatory manager. Her actions caused me to have a severe mental breakdown which put me on short term disability and ultimately made me resign from my job. to be clear, I’m not looking for pity, but trying to create transparency.

So there I was, 32 and suddenly widowed. “Widow”…. I’ve come to hate the way that word tastes in my mouth. But it’s a fact, I am a widow. All I could do was ask “what the fuck am I supposed to do now?”… Well the short answer is slowly I am figuring it out.  I know Craig would be so very proud of me for telling this story and for using this trauma to help others. There is still a lot I don’t know, each day is different. What I do know is that in his death, I have found purpose. He wouldn’t want his death to be the reason that the kids & I stopped living.

Your story may sound very similar to mine, or it may be wildly different, but what is the same is that we’re both on this journey.

Thank you for taking the time to read my story and for allowing me to help you on this journey.