I've had a lot of questions as of recently regarding Jay's dad's health, and if he passed away unexpectedly, or had it been a lingering illness. I apologize for not saying much along the way, but I think I took a cue from Jay on that... he's not one to elaborate on the details of things, just to face them as they come along. Here's the run-down of what happened:
Back in the middle of August, Jay's dad went in for some seemingly routine exploratory surgery. He suffered from a nerve conditions where he would develop small, benign tumors or bumps all over, and one of these non-cancerous bumps had formed internally, and doctors feared that it may obstruct his digestion and bowels if left unchecked. The plan was to simply remove it, and send him home.
Surgery occurred, and a few days later, Frank was sent home on a clear liquid diet. He seemed to be on the mend without complications. However, a few days later, he woke up at home, unable to get out of bed, and he was running a blisteringly high fever. Jay's mom called for an ambulance, and he was transported to a large local hospital. There, they located infection at the surgical site, and learned that the wound edges had not healed together properly.
At this hospital (the first, of many), he was placed on a battery of IV antibiotics for a few days, the infections subsided, and a second surgery was performed to close the initial wound correctly. So far, so good. Yet, in the days following the second surgery, Frank began to run abnormally high fevers ranging from low grade up to 103 or 104 F.
Fevers indicate further infection, so more antibiotics were pushed. This pattern persisted for a few more weeks until mid-September. It should be noted also, that rehab was never easy for Jay's dad. In the late 1970's, while working on the assembly line at the GM plant in Pontiac, he suffered a major fall, and required some X-rays on his knee. During these exams, doctors located cancer in Frank's left leg, and it was subsequently amputated. Jay had never known his dad with both legs, and he always walked with either a prosthetic leg and cane, or crutches. This always hindered any sort of physical therapy following a hospital stay--this time was no different.
Healing after the secondary surgery, Frank was transported to a long-term care facility for PT and general rehab. Things seemed to be progressing a bit, when he resumed getting infections again. This time, he had some pulmonary infections, and required breathing assistance with a ventilator.
Fevers also continued, and it was unsure where his infections were coming from, and why.
Doctors informed Jay and his mom that Frank may have MRSA, or staph infections, but regardless, they were near-impossible to treat. Many, many antibiotics were thrown at him over the course of October and November, while he went from somewhat healthy, to starting a "new" infection cycle every week or two. Each time, becoming weaker...
From August to December, he was moved between two major hospitals, one small hospital, and two long-term rehab facilities. Shortly after Christmas, when he seemed to be making a bit of progress at the large local long-term rehab facility, he was transferred again. This time, the reason was due to insurance "timing out"-- he hadn't made significant enough progress or received a specific enough diagnosis to stay where he was, so he had to go elsewhere. It should be noted that at this point, he was still on a ventilator. There was the issue. There are only three long-term care facilities in the state of Michigan that offer ventilator assistance services for their patients.
Four.
Frank was transferred to the nearest one to us--still an hour and a half away--just north of Detroit. It was insane. Jay and his mom were angry at the inconvenience and rationale that the insurance company was using as their excuse. Each weekend, they continued their visits--Jay driving, because his mom doesn't drive on her own in big cities--and hoped for the best. Also, at this point, Frank "timed out" on regular ventilator use, and was given a tracheotomy to go along with the ventilator.
Mid-January, a couple of extended family members went to visit Frank at the long-term rehab place north of Detroit. Frank wasn't there. They called us, and we called the hospital--he had resumed a high fever and multiple infections, and was transferred that morning to a major hospital near Detroit.
Here, Frank remained. Infections, Fevers. All the same things that had happened before. Over the course of time, though, he was getting noticeably weaker. Weekend visits continued, without many answers or solutions to his health issues. He hadn't eaten solid food since August. He hadn't spoken since Christmas, and even then, only a few low whispered, or "mouthed" words.
Last weekend, I went north with a bunch of women in my family for our annual weekend away that we refer to as "SnowKamp." It's a good time to relax and hang out for the adult women-- we snowshoe, laugh, and spent lots of time together. It's something we look forward to each year. During this weekend, Jay and his mom had their regular standing plan to go see his dad on either Saturday or Sunday. Friday night, though, they received a phone call from a pulmonologist requesting that they come down on Saturday to discuss some things regarding Frank's health.
The meeting wasn't good.
I called Jay from up north on Saturday night to see how he was doing--unaware of them going down for this meeting on Saturday. He said that the pulmonologist explained to them that they were down to TWO antibiotics left to try on his dad to fight off the infections. All of the others had no effect on him. They were going to try those two antibiotics, but it didn't look good. The doctors gave Frank a 50/50 chance to fight off these infections on his own, a 25% chance of ever getting off of a ventilator, and a less than 1% chance of him being the "normal" Frank that they once knew. Then they mentioned hospice.
Hospice.
That's a word that few of us can throw around casually. Hospice is the end-all, be-all option. There is no coming back from hospice. That is when life goes from trying to cure whatever is ailing, to making the patient comfortable and transition them peacefully toward death. They told Jay and his mom to do some thinking, and let the last two antibiotics try to do their thing over the next 48-72 hours.
Monday, we got word that during a blood draw, Frank's white blood cell count had not spiked. While usually, this is a good thing for most people fighting general illnesses, this wasn't good for Frank. It meant that his bone marrow was no longer producing white blood cells anymore. It was shot, exhausted, unable to do anything to help heal itself.
Initially, we wanted to see if Frank could be moved to a hospice location closer to our homes, further north, but they said no. To transport him, he would probably not survive the trip, and furthermore, he would have to be transported on a ventilator, however, no hospice centers would intake a patient on a ventilator. The moment they removed him from the ventilator, he was expected to expire.
Tuesday, the family made the decision that if Frank was terminal, there was no need to prolong his suffering. The feed tube was stopped, and every effort was made to make him comfortable. He was placed on a morphine drip and Ativan to keep him calm and comfortable. Each hour, a respiratory therapist came by to scale back, or "wean" him off of the ventilator.
Tuesday evening, in the ICU, we had a beautiful sunset outside of Frank's window:
Waiting for someone to pass away is an exhausting experience. Family members who are present have to be reminded to take a walk, keep hydrated, eat. They are so focused on who is in the bed, that they forget to care for themselves. As the daughter-in-law, and the only non-blood relative in the room, I wanted to be there for my family, but I didn't want to be a burden. I didn't really know what to do during that stretch of time, so I was just there, if they needed anything.
I think I drank about thirty cups of crappy hospital coffee, and watched about fifteen episodes of Family Feud on mute with closed captioning. I also think that I read all of the Psalms and half of the New Testament.
At 3:30 in the morning, the ventilator was removed. It seemed as if we were all expecting Frank to pass at that point. It seemed like such a final thing. The respiratory therapist even said that some people expire immediately at this point, or they don't. There would be no way of knowing.
He held on.
He held on for nearly nine more hours.
Around 7, we went down to the hospital cafeteria for breakfast. Dried out scrambled eggs and hash browns, but we were all starving-- and exhausted. No one had slept more than a minute or two sitting upright since 4:30 or so Tuesday morning. After breakfast we went back upstairs to the ICU to be with Frank again.
Days.
We had just endured the worst 24 hours that most of us had ever endured. We steeled ourselves against this news. The past 24 hours had seemed impossible. Now, to have to do it all over again? Possibly for days on end? We were numb.
Grace arrived within 15 minutes of this news. Changes began to occur. Frank's heart rate started to drop about ten beats per minute every few minutes. Blood pressure fell. He was slowing down.
At 12;12 Tuesday afternoon, his heart monitor flatlined and dropped to 0. It flickered once for a moment, and then was gone. He was gone.
It's an interesting experience to be in the room with someone who has immediately passed away. They become almost unrecognizable in an instant. I've witnessed this three times now in the past ten years, and I can only say that it furthers my belief that the soul really does leave the body. They no longer seem like their former self. The shell is there, but their spirit is not. If you've been in a similar experience, perhaps you understand what I mean.
Fast forward to Thursday...
Thursday, funeral arrangements were made, phone calls to extended family were made, flowers were chosen, and service plans made with the church. Some family travelling to the funeral asked if they could stay with us, and Jay said that he would rather them stay with us, than with his mom. She certainly didn't need that sort of stress.
The visitation is now on Sunday, and the funeral will be on Monday.
Out of the blue, Jay asked that I make homemade biscuits and gravy for breakfast on Monday since we will have houseguests, and they would all love that for breakfast. I told him I would make him whatever he wanted. We left my mom's house from putting together picture boards for the funeral home, and went to the store to buy breakfast sausage, as we were out of bulk.
A bit of our grocery "allowance" has been spent, but I would have spent every cent of it and then some, if he wanted something else. He usually is happy with whatever I make, and requests nothing, so when he does ask for something specific, it's a big deal.
If my husband wants biscuits and gravy on the morning that he will bury his father, so be it.
--SH