One Journey After Diabetic Coma

(Tricia) Since Linda came home from the hospital in November, it has been much quieter than it was before she went in.  No more physical therapy, very few nursing visits. Hospice started up again two weeks ago, but Linda has turned down most services (such as the bath aide and chaplain). She has been telling us that she wants to rest, so we are giving her that. She does get up in her wheelchair almost every day, which at least gives her a change of scenery. Last Tuesday, we did take Linda to a previously scheduled doctor's appointment with a neurologist specializing in cognitive issues such as brain injury and dementia, at a practice is called the St. Louis Center for Cognitive Health. I almost canceled the appointment, because I didn't think much would come of it. But this was an appointment I had rescheduled after canceling one in July the last time she was in hospice (and I had made that appointment in March-- the joys of American healthcare). When I canceled the July appoin...

(Tricia) After Linda's being in the hospital for two weeks and the house being empty of caregivers, it is now strange to have slipped back into the old routine. But we are back into an odd kind of rhythm, with Linda's movies and classical music (now classic Christmas music--love Bing Crosby) playing into the late evenings, and her occasionally yelling out for me or Marilyn to come save her when she doesn't like what one of the caregivers is doing! Over the weekend, we put up the big Christmas tree in the family room, and a small Christmas tree in Linda's room, decorated with crocheted angels that she used to make us as gifts every year. So, that makes the house a little more festive.   Linda's "angel tree" (It looks a little wonky because it toppled over last night when one of base supports broke! It needs a little TLC to straighten everything out again) Although Linda had the hospice evaluation last week, we have not had the formal intake, so we are no...

(Tricia) I wasn't sure whether to have Linda discharged yesterday or to wait until Monday to have the drain (which they tell me is nonfunctional) removed from her right side. At the advice of her primary care physician, I finally decided to discharge her yesterday and worry about the drain later. Unfortunately, we couldn't schedule an ambulance to bring her home until 8:30 last night, but we did get her home and settled by around 9:00. Her hospice intake will be late afternoon tomorrow. Linda had been fairly alert and interactive in the hospital, and we had hoped for the same once she got home. But all day today, she has been quiet and moody (for good reason, of course). She has not wanted to be bothered by anyone--she just wants to sleep. She did wake up enough to eat lunch (she asked for two peanut butter and jelly sandwiches, of all things!), but she's asleep once again now. Perhaps she needs the rest from being in the hospital for so long, but it's very hard to tell...

(Tricia) Once Linda's CO2 levels had been lowered and she had become responsive again, I thought that they then would discharge her.  But the hope we had last week that Linda would pull through from this episode and come home as she was before the CO2 built up has been fully dashed, unfortunately. It started on Thursday, when the pulmonologist on call said that they wanted 1) to try to clear Linda's drain so it would be functional again and 2) break up some scar tissue that was holding in some "loculated fluid" in her right lung--in other words, fluid that is walled off with tissue so that the drain cannot reach it. He said he wanted to inject what is called "TPA," a blood thinner, into her lung cavity through the drain. The TPA would both clear the drain and remove the scar tissue, which would release any remaining fluid to be drained. I asked him what the complications of that procedure would be, and he told me that there could be some bleeding and tempor...

(Tricia) Linda's still in the hospital, but everything is stable. When she was first admitted, they first moved her from the ER to a regular room,  where she stayed for all of about three hours before the doctor on call decided to move her directly from that room to the ICU. All of that confusion was a bit frustrating. But they took good care of her in the ICU, and with all of her vitals in good shape, they moved her to a regular room this afternoon.  The CO2 levels in her blood, which had reached critical levels at the time we had her taken to the ER, have normalized. Now, she's on an oral antibiotic and a nebulizer treatment for a slight case of pneumonia, and they're trying to figure out how to make the drain, which the doctors at St. Mary's installed back in April, work. If they can clear any obstruction from the drain's tubing, they can remove any fluid from around her right lung. But she's awake, eating, and talkative, and she says she's not having a...

(Tricia) When Linda became unresponsive last Friday, we weren't sure what to do. On the one hand, when she wasn't waking up, we knew something was obviously very wrong. But on the other, we knew that if she had still been on hospice, we would not be taking her to the hospital to be treated. We would just let whatever it was run its course. It is one of the most difficult aspects of this very difficult situation: How much is too much? When is enough enough? I know there is a reasonable argument for not putting Linda through more treatments. But where I struggle is when the "treatment" is something relatively simple--an antibiotic for infection, for example. I often don't know what the right thing is to do. When we're talking about caring for someone in a fragile state (and, to be honest, someone reaching end-of-life care), each decision is especially harrowing. I guess that reality, though, means that there are really few "right" or "wrong" ...

(Tricia) On Thursday, we had Linda sitting up in a chair in our front room, when she said, as she often does, "Please take me home. Let's get in the car and go home." Sometimes, I will ask her to clarify (because, sadly, "home" can have multiple connotations in this situation), but she always says she wants to go back to Mountain View. And it breaks my heart, because even if we did arrange for an ambulance to take her back to her home in Mountain View, I'm not sure how I would set up the same network of care that she has here. Plus, I think when she says, "Take me home," she really means, "Take me back to the independent life I had before." Which, of course, is not possible. It all makes me impossibly sad. Then, yesterday, Linda gave us all a scare, and none of us knows exactly why. I think I mentioned in the last post that her oxygen rates now plummet if she is off supplemental oxygen for even a short period of time, and she seems...