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Showing posts from November, 2022

11-27-2022 Linda's home, with hospice intake tomorrow afternoon

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(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

11-22-2022 Still in the hospital--things have gotten worse

(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

11-16-2022 Linda's awake and wanting to get out of here :-)

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(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

11-14-2022 It was a hard call to make, but Linda is back in the hospital

(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"

11-12-2022 Something is wrong, but we're not quite sure what

(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

11-5-2022 Long time, no Linda :-)

(Tricia) I know it has been a long time since the last post--things have gotten especially tiring as Linda received all of her therapy appointments. Plus, she has had a couple of very up-and-down weeks. For the past three weeks, Linda has been receiving two sessions of physical, occupational, and speech each week. However, she has been discharged from both OT and speech, so she now will only have PT.  Insurance has approved only three more sessions of that, pending her doctor submitting new orders (and the insurance company, of course, agreeing to them). In the meantime, in the "good news/bad news" category, about a week and a half ago, Linda was able to take a few assisted steps with her walker, which took her caregiver and me by surprise.  We thought we were just assisting her to stand, and she just started lifting one leg, then the other! However, Linda was still quite unsteady on her feet. She thought that she could make it the five steps or so from the chair to the bed--