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 temporary pain.  So, I let him inject the TPA, which did cause Linda discomfort for a few hours.  But afterward, all of a sudden, not only was her right lung was completely overrun with fluid but the so-called "loculated fluid" was still untouched (I found out later, from another doctor, that the TPA was unlikely to work anyway). The first and only option they presented to fix the problem was a "major surgery to go in and clean out all the loculated areas and pull out the fluid."

Of course, such a surgery is out of the question. Linda wouldn't survive it.  A cardiothoracic surgeon came in later to tell me as much. 

I asked the pulmonologist if they could do what they did at St. Mary's Hospital, and pull out as much fluid as possible with a needle, via thoracentesis. He agreed, but I could tell he wouldn't have offered if I hadn't asked--likely because he believes the fluid will just return. But I wanted to try to get as much fluid off as we could before we took her home. They did that procedure fairly quickly, but they were able to drain only about 150 ccs of fluid from her right lung cavity. The rest of the fluid present was still behind scar tissue.

Meanwhile, they also suspect Linda has pneumonia, based on areas that show up on X-rays and CT scans, so they are giving her intravenous antibiotics.  Plus, they're giving her fluids.  And we're right back to where we were back in April, when the extra fluids made Linda's lung cavities filled up the first time.

And I also haven't mentioned that they did a scan of her right knee, to find the source of her pain there, and there was a "nondisplaced fracture" in the area near the kneecap. The ortho doctor came in to say that he wanted her to wear a straight-leg brace and not bear any weight on it for four weeks.

In other words, as often happens in hospitals, things have just completely fallen apart, going from bad to far, far worse.

So, today, the chaplain came in to speak with Linda and me. The chaplain was told us she had come to offer us support and discuss end-of-life care.  I knew we would get here once again, but I just had hoped we still had more time. During this conversation, Linda asked, "What can I do to get better?" And the chaplain and I had to tell her that we really didn't have any good options left. So, she looked at me, and said, "Well, I guess I'll just have to go back to my original plan." And when I asked her what that was, she said, "You know--die."  She also said, "It looks like I'll be the first of us to go." She meant the first of "The Sisters," as our friend Jeff likes to call us: Her, Marilyn, and me.

I burst into tears--that was so incredibly hard to hear or even think about. She wants to get better so badly, but there are no longer any options. And when she did have options, her brain injury kept her from participating in those therapies. As much as I tried to maintain hope throughout this process, deep down I knew we were fighting a losing battle.

So, we have decided to have Linda stay in the hospital long enough to complete the remaining 3 of 7 days of intravenous antibiotics for pneumonia, which means she will not be home for Thanksgiving.  Then, we will bring her back home under hospice care once again. And my hope that we would have one more Christmas together is also quickly fading (although we can still obviously decorate and try to have it early, if Linda's condition holds steady just long enough).

The pulmonologist called me this evening to say that her latest CT scan showed that her right lung looked pretty much back to where it was when she was first admitted (good news), but that there now was a small amount of fluid around the left lung (bad news). He is going to continue to give her Lasix to try to get as much of the fluid off as possible.  Regardless, he made it clear that there wasn't much more to do but to try the Lasix, finish out the antibiotics, and then have her return to hospice care. 

This has been a sad and terrible day, and I am devastated at the idea of losing Linda. We certainly never have enough time with our loved ones, and I know I didn't spend nearly enough time with her. The pandemic lockdown in 2020 just made that much worse, cancelling what would have been our last real holidays together (Linda was concerned about COVID so she didn't want us to come down to Mountain View from St. Louis to see her, and she refused to come up). I so wish I had spent more time with Linda when I had the opportunity. 

Once the brain injury happened, I knew that we were headed to this point. But even this late into it, I still thought (as we so often mistakenly do) that we would have more time. And we have a little, but not the kind of time that we had hoped for. 

Tonight, Ed, who has been so wonderful through all of this, has gone to be with Linda for the evening, so I can be at home and try to regroup somehow.

Updating the blog will become more difficult as we get deeper into this, but I will try.