4-8-22 One problem creates another, and so on....

(Tricia)

As Linda was getting better back in December and January, we always knew that if she were to fall and break her hip, it would lead to so many setbacks. But even so, I did not realize just how many setbacks would arise, and just how one would lead to the next.

Since Linda was admitted to St. Mary's Hospital on Wednesday, they were having an incredibly hard time bringing her oxygen levels up and her heart rate down. On Wednesday evening, things looked particularly hopeless when her O2 levels dropped into the 70s.  But then a respiratory therapist discovered that Linda's oxygen mask wasn't tight enough. Once that was fixed, Linda's levels went back up into the 90s again. That was an incredibly upsetting moment, with a half-dozen medical staff in the room and some serious conversations with the doctor on call, all caused primarily by a leaky oxygen mask.

We then had some good news Thursday morning, when the nurse called to say that Linda was awake and would be able to eat breakfast. However, things were not quite as good as that--when we arrived at the hospital later, we were told that when she tried to take her pills earlier, she coughed and choked. So now, she has become a swallowing risk--she can have no food or water until she passes a swallowing test. She failed the test yesterday. She was supposed to get another test today, but apparently, her heart rate was too high so they did not perform it. (I'm not sure why a high heart rate would mean they could not administer a swallow test, but that is what the nurse told me.)

In the meantime, they have her on diuretics to try to help her shed the many pounds of fluid she has retained since her second hip surgery on March 5.  The diuretics, however, are causing her blood pressure to drop and her heart rate to go up. Then the medications she takes to make her heart rate go down make her blood pressure go down further. When they try to treat one thing, it causes another thing to go wrong. As the cardiologist put it to me this afternoon, "We're chasing our own tail here."  But he also said he was going to stop worrying so much about controlling her heart rate and shift his attention to actually trying to find its cause.  I'm not sure what will come of that, but he is the first cardiologist she has seen to take that approach, so maybe he can figure things out where so many others could not

Meanwhile, Linda is begging for a glass of water. Continuously. And she looks so betrayed when we tell her we cannot give her any water until she passes a swallow test. She is so thirsty and miserable. The fact that she cannot have any water is just making a bad situation worse. But that has been the story of the past ten months. If there was a comfort, benefit, or improvement, this illness would soon find a way to add a factor to the mix to take anything positive away--whether it was her brain injury taking away her ability to see the reasoning behind therapy, C.diff taking away her ability to do therapy, the anesthesia from her first surgery wiping out her cognitive gains and leading to infection, the second surgery causing her to retain an incredible amount of fluids, and now her breathing treatments taking away her ability to swallow so suddenly. (She had eaten three full meals the Tuesday before she went into the hospital without issues.)

To make matters worse, I went to BJEC this afternoon, the skilled nursing facility that sent her to St. Mary's Hospital, to pick up a few things to bring to Linda in the hospital. I got there only to find that her room had been emptied and cleaned. When I asked the nurses what was going on, they told me that Linda had been discharged from BJEC once she had been sent to St. Mary's. They didn't even call me to tell me that, or allow us to pack up her things in a reasonable fashion. They sent me downstairs, and the receptionist brought all of Linda's things stuffed into plastic bags on a trolley. I have no idea whether our hard-fought-for bed for Linda in a decent facility will be available once she is ready to be discharged from the hospital.

But I realized we have other priorities at the moment. First, Linda has to recover from this latest setback, from her breathing to her heart rate to her blood pressure. She has to regain her ability to swallow, so she can eat and drink again. And then we can figure out what to do next.

Of course, I can't help but return to the thought that if the insurance company had agreed to cover Linda's stay at a long-term acute care hospital, as the doctors at Missouri Baptist had recommended, the doctors there would have been monitoring her more steadily and caught any problems early, before they reached a point of urgency. Then again, if the insurance company had paid for a stay at an LTACH back in July, when the doctors at St. Luke's Hospital had recommended the same, it is likely she would have gotten the therapy she needed to improve faster and could have avoided breaking her hip in the first place.

It all comes down to the fact that our healthcare system is not set up to help someone with complex issues, like Linda. Much like the cardiologist said, for the last ten months, we really have been chasing our own tail, trying to work within a system that is more interested in what things cost than what's best for the patient. 

On the one hand, I understand that healthcare expenses can get out of control quickly. But on the other, a stay in an LTACH last year would have been far less expensive than all of the insurance-covered care Linda has required since. If the insurance company's interest is purely financial (and, of course, it is), its decision to deny those two particular claims have turned out to be poor ones.