If I hadn't taken him into the ER and he had gone to bed that night, he wouldn't have woken up the next morning. But it wasn't the first time we had tried to get help, this was actually the SIXTH.
Let's start at the beginning - but first a few things:
•Writing this is part healing for me and part reminder
for you to advocate for yourself and the ones you love!
•I am so grateful that Mark IS alive and for the nurses
and doctors who took action to make that possible.
•Our crew - friends and family - SHOWED UP!
We were taken aback and so humbled by the response and support. Thank you.
Now to the story -
Once upon a mild April day in 2017...
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| Mark's last healthy day before the illness |
The day before Mark got sick was such a beautiful day. Mark, Eliana (then not quite 2 years old), and I played in the playground after church and then met some of my family at our house for lunch and a nature walk down the path to the pond near our house. The wind was soft, the sun was gentle, and we all smiled as Eliana giggled at the ducks. We had no concept of the trauma ahead.
Mark woke up at 4am shaking with a headache, fever, and chills, teeth literally chattering.
I got out some medicine for him and we all went back to sleep.
The next day was worse. Mark stayed in bed for 18+ hours, alternating between shivering under all the blankets he could find and drenching his sheets with sweat. The headache never ceased.
Mark agreed to go to Urgent Care, a sure sign he felt very poorly because he is one that avoids even taking Dayquil. The Physicians Assistant gave him a quick exam (looked in his eyes, nose, ears, etc.), told him he probably just had a cold and that it would pass, and that she couldn't do anything for him. He came home and went back to sleep, continuing to feel awful.
Two more days of this, worsening each day, and Mark went back to Urgent Care. The same P.A. walked in saying, "I don't know why you are here". Mark knew something was not right, and this person would not even take the time to look into it or treat him with an ounce of empathy. A quickly-administered neurological test (touch your nose, push your leg against my arm, etc.) and Mark came home feeling very discouraged. By this time, the fever and headaches had worsened and he was beginning to lose vision (occipital migraines) and see things.
The next day was even worse and it was hard for Mark to keep hydrated with the fever and sweats. He was resting on the couch and I checked if he needed anything before I took a shower. I got out of the shower a little later and could hear him calling for me with a raspy voice. He was so thirsty but exhausted and had been calling for a while for me to get him some water. He was miserable and I knew it was time to consider the ER. After calling our insurance's nurse hotline and going through his symptoms, they said it would be a good idea to get him checked.
We arrived and once a room was available, we went in and Mark was checked out. They gave him some over the counter medicine for his headache and then put him on a drip to replenish his fluids. The ER doctor that night ordered a flu swab (yep, that one that feels like they are going all the way up your nose into your brain), convinced that Mark had influenza even though he had had no nasal symptoms. While that was checked, Mark received THREE total bags of IV fluids. That's how dehydrated he was. Being re-hydrated made him feel a little better but he was still experiencing fever whenever the fever-reducing medication wore off. They also ran a few ultrasound tests on internal organs (liver, kindeys, etc.), which looked normal. The swab came back negative for flu but the doctor still thought that's what it was and sent us home with a prescription for a generic antibiotic (Z-Pack).
Mark continued to repeat the fever/chills cycle and the pain in his head remained debilitating. He was still exhausted. He slept a lot and when he was up, he sat in his chair under a blanket. He didn't want to get our daughter sick so Eliana and I played together and tried to give him rest and space.
Mark was told to follow up with his primary physician after the ER visit if the symptoms continued, but he didn't have one because he was rarely sick. We checked around to see who had space for a new patient and could see Mark quickly. The doctor was kind and good-natured. He listened to Mark, examined him, and ordered some bloodwork. Mark went back two days later because he was still sick and his head was hurting even more. The doctor was starting to follow the idea that something was wrong with Mark's liver because it was puffy and his iron counts were off. The tests had also shown a higher level of white blood cells which can be caused by infection.
Friday night came again and it had been a week since our last ER trip. I took our daughter to Mark's parents and then came back home. I could tell he felt horrible and I was really worried about him. His head hurt so badly and he was so miserable that one time he yelled that he would rather die than continue to feel like this. I called the nurse's line again after taking his temperature of 105F and I decided to take him into the ER again.
The police officer at the ER convinced Mark to sit down in a wheelchair because he looked like he was about to fall over. Once we got into a room, they got him hooked up to fluids again and examined him. His fever had gone down a little with medication and he was still able to stand and talk and joke a little. They decided to do a lumbar puncture as the next step to take because they didn't know what was wrong. Mark got up, went to the bathroom, and then they did the test. The spinal fluid came out pretty clear so it didn't look like anything was terribly wrong at first glance, but they sent it back for tests while we waited. They did warn us that a side effect of the LP was a headache and to have him lay down if that happened.
The headache came on strong and painful and Mark began to get nauseous. I found a puke bag and he threw up twice. He said this was the worse the pain has been yet. I called for a nurse one came in with a mask on. The tests had come back positive for meningitis (and were still being processed for viral or bacterial). They gave him antibiotics immediately and a shot of morphine for the pain and that seemed to quiet his groans of pain for a bit. But then he stopped answering questions. We thought maybe because it was because of sensitivity to the painkiller at first. They started to transfer us to a room in the ICU and he was still not answering questions but he had started to moan.
Once we were in the ICU, the lead doctor there was surprised to hear that Mark had been walking around just an hour before. She also said that the painkiller should have worn off by now, he should have been able to talk, and that this might be the "worse before better" phase. That's when I felt the floor drop out from under me.
By then it was almost midnight. I was keeping Mark's parents in the loop and tried my best to explain, without panicking, that it was pretty serious and mentioned the worse before the better stage. I told them I would stay with him overnight and they planned to come up early the next morning so I could go home for a bit.
An ICU nurse chose to care for him (apparently ICU nurses have a certain amount of flexibility and can choose their next case) and asked how I was doing after checking on Mark. Honestly, I didn't know. I hadn't thought about my needs because I was so worried about him. She got me some Sprite and crackers from the nurse's station and offered to find a bed I could sleep in. I was grateful for her kindness but just wanted to stay by my husband.
He was in and out of consciousness and when awake, he still couldn't speak a coherent word, only groans and sounds. He pulled at his IV lines and his catheter, and then became hot and started pulling off his hospital gown. The rule is that patients must keep their gown on but Mark resisted so much that the nurse allowed for him to take it off as long as he kept the sheet on his lower half. Mark tried to get out of bed a few times after that and I had to try to talk to him, explaining he was naked and needed to stay, and I had to physically restrain him a few times while calling for help. He kept making faces as if thirsty so they allowed me to give in water in a small sponge from a cup of ice water. He grabbed it from me once because he was so thirsty and got most of it in his mouth while spilling the rest. It was so strange to see him this way as he was unable to process or communicate but his brain and body were continuing to kind of function. Each time the nurse came in she would ask him the same questions and it seemed as if he tried to answer her but the words were just gibberish. One answer was pretty clear to me though when the nurse asked how he was doing and he answered, "shibbly".
Mark's parents came in the morning and I went home for a shower and a few hours of sleep. Mark was still not speaking clearly when I left so I really didn't know what was going to happen. I fell asleep wondering how he was really feeling/thinking, if this was going to be his permanent cognitive state, and what the coming days would bring. When I woke up, I checked in. Mark's sister had joined their parents at the hospital and they reported that Mark had recognized his dad's voice and answered, "that's my dad" when the nurse asked if he knew who it was. Over the course of the late afternoon and evening, much to our relief, he became more responsive between drifting in and out of sleep. By that night, I was able to have a pretty normal conversation with him, responses only slightly delayed.
The official diagnosis came back as bacterial meningitis which had spread to infect his lungs, heart, brain, and blood, causing sepsis. They switched to an antibiotic more specific to this bacterial strain and it worked quickly. He still felt pretty horrible but the pain in his head had started to dissipate and the fever and chills were under control. The next morning, Mark was moved to a regular hospital floor and the plan was to spend another night and then continue the antibiotics at home. But then a nurse noticed something strange about his heartbeat.
The nurse heard an irregularity and ordered an EKG. This showed that his heart skipped a beat here and there. They looked into it further and found that there were spots of infection on the mitral valve of his heart and part had been 'eaten' away by the bacteria. Blood was not flowing properly because the one-way valve was allowing blood to flow in both directions. This was the reason for his latest symptom - extreme exhaustion. This is not something that could be left alone for risk of a heart attack or stroke. The problem was that he was on blood thinners to reduce the risk of blood clots but to have surgery for his heart, he would have to come off the blood thinners. It was a catch 22 between waiting long enough for the antibiotics to do their work on his body and the cysts in his brain and not waiting too long for the surgery in case his heart failed. New plan: try to let the antibiotics work for a few more days and schedule the surgery and hope that nothing extremely bad happened in between.
During this time, Mark's family, my mom, and I created a rotating schedule. I would have breakfast with Eliana and then would go to the hospital to be with Mark. In the late afternoon, I would pick up Eliana from my mom's or come home and switch with Mark's parents so they could visit him while I put Eliana to bed. It was good for someone to be there with Mark - to advocate for his care, keep track of the medical plan, and to keep him company. While I was there, I also organized friends visiting or bringing meals while keeping friends and family updated. I brought in a series of little watercolor paintings I was doing to keep my hands busy and to ease my anxiety.
In those days of waiting, Mark started having pain in his left calf. It kept getting a little more painful each day but the doctors were concentrating on the upcoming surgery and thought it might just be muscle wasting from being in bed at home and at the hospital for so long. We come back around to this later.
The morning of the surgery came along with a strange vertigo/elevator-moving feeling. I was doing my best to be calm and collected, but my body was showing signs of worry - sores on my hands, dizziness, and water retention. Early in the morning, we gathered in Mark's room to collect his things (the recovery room would be in a different area of the hospital) and then met him in the pre-op room and prayed for him. Then it was time to wait. Everyone deals with worry differently - some need to pace back and forth, some need to talk it out, some need quiet and space. To keep calm, the best I could do for me was to sit quietly and paint.
We got word halfway through that the damage was worse than expected and the whole valve needed to be replaced after they cut away some of the damaged tissue around it. A couple of hours later, we were asked to step into a small room to wait for the surgeon to come to talk to us. The private room made me a bit nervous as sometimes that can mean news you don't want to hear but it was just Mark's surgeon personally explaining to us what they found, how they repaired it, and how Mark was doing. They said his heart had started back up but was very slow so he had been put on a temporary pacemaker.
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| Surgeon explaining how the bacteria had created 'vegetations' on Mark's mitral valve |
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| Mitral Valve Illustration
We had to wait a little longer for Mark to be transferred to his new room in the ICU. I was happy to see that the nurse we had the very first night in the hospital had asked to be on Mark's care team again! The team warned us that he might look very puffy and pale because of all the liquids and the fact that he had been on bypass during the surgery. We were allowed to see him one by one as he was slowly waking up.
I walked in and he did look different. He was on a ventilator and had a tangle of IVs coming out of the artery in his neck. He had multiple large drainage tubes that came from his abdomen. His skin was pasty and puffy as they had warned. My first feelings, though, were gratefulness that he was alive and then a huge wash of empathy coupled with the kind of tingling I feel in my body when I see someone in pain.
  
When I spoke to him, he opened his eyes and he knew me and acknowledged me. Whew. But I could tell that as his mind was waking up, that he was very aware of and very uncomfortable with the intubation tube. He asked for a piece of paper to communicate and slantily scribbled that he needed the tube out now. He was gagging on it. He also scribbled that his body was crooked and then corrected the grammar of the nurse. Oh yes, his humor was still there.
Eventually, the tube was taken out and Mark shared that it was probably one of the worst things for him, even after all he had been through. He was very thirsty but fluids were limited. I was able to feed him only a few ice-chips an hour. It got later and his family went home to rest; I decided to stay there overnight with him. This time I accepted the offer of a bed and would sleep for a little, then spend a few hours with him, then rest again. I had such strange and scary dreams while trying to sleep that I gave up in the early morning and sat next to him.
A little while later, the nurses came in to get Mark moving a little. The first move was to sit up and get to a chair. He got pretty nauseous when moving, mind you that his chest had recently split open and there were still drainage tubes sticking out of his upper abdomen, and he threw up a little. His leg had continued to worsen so he limped to the chair and had a stool top prob up the sore leg. He would wince in pain when anyone touched it.
His parents and sister came in the morning and I went home to get some rest and spend some time with kiddo. By the time I returned in the afternoon, I heard Mark was going on walks! I rushed to catch up and take a picture of this. Proud wife moment! He was putting on a brave face though because he was limping and said that his leg had not gotten any better.
Mark got moved to a cardiac step-down floor and there was talk about timing for discharging him. A PIC line was installed so that we could continue to administer the twice-daily antibiotics at home. We knew that something wasn't right with his leg, though, as it had continued to worsen post open heart surgery. A physical therapist, who had been working with Mark on different strengthening/stretching exercises, went back to his care team and insisted they take another look at his leg At this point, he could no longer put weight on it. Another scan was done, this time to check the arteries. A previous scan had been done of his veins (they had been thinking deep vein thrombosis). Scanning the arteries revealed Mark had a complete blockage in his left popliteal artery! In a surprising break from the bad luck we'd had so far, Mark had three extra arteries that branched off above the blockage that provided enough collateral bloodflow that his leg remained alive during those eight days of blockage. Normally, he would have already lost his foot but because of his years of weight lifting, running, etc., he had grown extra paths of blood flow to his lower leg. It wasn't quite as much oxygen as the muscles/tissues needed and some of the muscle tissue had been without oxygen.
Usually, another surgery right after open heart surgery is not recommended but, unfortunately, that is what Mark needed. They scheduled the surgery and poor Mark had to wait in the hospital longer. He wanted to go home so badly. He still hadn't seen Eliana in person (he didn't want her to see him like this in the hospital or get exposed to hospital illnesses) and it had been over two weeks, plus the previous two weeks he'd spent at home where he was so sick he hadn't really gotten to see her. We tried FaceTiming with her and I know it was both good and hard for him to see her on the screen and hear her little voice.
The day of the second surgery was here and the whole family came again. Mark was ready and was hoping to have a lot of relief after they removed the blockage. The surgery turned out to be more difficult than expected because it wasn't a clot, but another vegetation caused by the meningitis. This caused the escalation to a different surgical team who would need to remove the vegetation in a more invasive surgical manner.
They didn't alert him to the fact that sometimes, the pain after removing that kind of blockage is even worse as blood is finally able to reach the oxygen-starved tissue again. Mark came out of surgery writhing in pain, loopy from anesthesia and the pain medications, and clinging onto the guard rail of his bed. After open heart surgery, you are supposed to keep your chest stable and flat, but he was folded in half and refused to lay on his back.
I was eventually able to get him to sip some chocolate milk (he hadn't eaten since the night before) and he came to a little and repositioned himself better. He talked to me about the pain and how it was so intense. The nurses gave more pain medication and we all let him rest.
As Mark recovered, he was itching to go home but his heart was doing some acrobatics and put itself into an atrial flutter. They kept him for another night to monitor him. The next day, when a friend visited, brought him lunch, and asked him how he was doing, Mark broke down and wept, saying he just wanted to go home. He had been in survival mode the whole time in the hospital and hadn't given himself time to process emotion. It had been three weeks, and he was just done.
Eventually, Mark got to go home. Many complications were to follow (like needing a cardioversion to put his heart back into normal sinus rhythm, two permanent sutures in the mechanical mitral valve not holding, and various challenges with the antibiotics and the blood thinners) but he got to go home and see Eliana for the first time in three weeks!
There could be a whole other post about all Mark and our family went through in these two years since, and how complications and challenges are still very present but I am just grateful for this outlet to share our experiences. Telling the story (and painting it out) has helped me process.
Thank you for reading!
Take care,
Christy
If you're curious about what I painted during this experience, please check out my 100 Days of Scribble Sketch book.
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