I guess I never mentioned it, but my mom was released from the hospital the very beginning of December. There was this big kerfluffle about the hospital not allowing her to stay there anymore (despite the rampant infections) and whether she could get home health care or be forced to a nursing home. The latter two options were basically decided by Medicare and both would result in a huge out of pocket cost. In the end, she was able to come home. We had a nurse come by a couple times a week and we had IV antibiotics delivered to administer twice a day. She also took a couple oral antibiotics.
The IV antibiotics were actually really cool. Rather than needing an IVAC (that thing IVs are hooked to in hospitals with the buttons and numbers and stuff to determine how fast it runs in) the medicine part was in the shape of a ball with a smaller ball inside. Through a vacuum force (I’m assuming) the medicine would automagically start to infuse once hooked to her open line. It was a controlled infusion; there was a part to it that stabilized the rate at which the liquid went through the line into her IV. Just like it would be set on an IVAC except in one convenient little bouncy ball. As the antibiotics left, the ball collapsed. That’s when you could see the second ball inside – which I can only guess was the part that made the sucky-out motion possible. All very cool.
So, she spent the whole of December home. It cost $2000 out of pocket for the nurses, meds and supplies. Then, two days before New Years Eve, she fell while getting back into bed from her bedside toilet. We realized she had a fever then, as well. Wasn’t super high – but in retrospect it was high enough that she should have gone to the ER (anything over 100 during the home health state means ER, her temp was nearly 102.) This all happened in the middle of the night so her doctor was notified in the morning. He ordered blood tests and some blood cultures (which are drawn from places other than your IV to ensure any result is valid/not from human error or interference, not due to a bacteria on the outside of the heparin lock and is indeed in your bloodstream since it’s coming from multiple sources.) Oddly enough, right after this, the drains from the cyst in her liver began producing a huge output – normally we can go days without emptying a drain, now we have to do it a couple times a day – and it had changed color drastically. So Saturday afternoon her doctor called with the results; the infection she had in the hospital is back (or never left) and she has to go back to the hospital. This particular infection is incredibly hard to treat as it’s resistant to a lot of common antibiotics. She was taking a brand new antibiotic in the hospital and at home which we all had hoped would get it under control. I think her immune system is so weak right now, though, that even though it seemed like it was gone – or very nearly gone – once she had a physical setback it came back again. She had been feeling pretty crappy around Christmas and the week after. I can only guess that she had some secondary illness that compromised her enough to allow the original infection to come back.
This really is a huge setback for a few reasons. First, she has to go back to the hospital. She hates it there because she gets afraid. So somebody has to stay with her at all times. The last few times it’s been my dad after she and I fought and I refused to do it anymore. She will not let any of the nursing staff help with things like going to the bathroom or bathing – we have to do it. This is not fun work. I quit being a nursing assistant long ago. Since my dad will likely be there about 18 hours a day (or more) that means I will be stuck here without a car unless I take him to and fro. Which I may do this time. Finally, her doctor made it clear that she would be transferred to University of Maryland soon to have this cyst surgically drained and possibly removed.
Now, this last part is the big one. Obviously it means a lot of time in Baltimore. Which may mean a second car needs rented – who knows. But the surgical draining is a big surgery. She had this problem after her open heart surgery, though the infection only stuck around for four months off and on before going to Johns Hopkins. At the time, though, the doctor there really thought it was cancer so it was treated much differently. The real point is that at this point, I’m not so sure she can handle surgery. Depending on what needs to be done, it could be a very big surgery. If this is the same cyst from before, it’s one that is wrapped around her liver (it was never removed fully – the “top” was cut off and a mesh covering was placed over it to try to prevent it from re-growing.) We do know that it is a cyst on her liver, we know that it has many segments to it and that it’s growing some wicked stuff. When she was initially admitted for it post-stroke they were unable to determine the type of infection that she had. So she stayed in the hospital for 3 or 4 weeks taking a slew of different antibiotics in hopes that one would help. She came home on two broad-spectrum oral antibiotics. When she got sick in November, they quickly identified the infection and were able to treat it a bit more aggressively.
I don’t want to be a downer (and often get angry at my brother’s claims that Mom is dying) but there are very real chances she will not survive this. For one, her immune system is complete crap and the continued infections puts great strain on her organs. Before all of this, she already had a very damaged liver from years of living with Hepatitis. She literally has (or has had) ever strain of Hepatitis discovered at this point. Most were contracted while she was a nurse from a needle stick, which can happen to anybody. She had Hep A as a child. Her kidneys are crap, especially her left one. While pregnant with me she went into renal failure. It was one of those things where we both nearly died. I was born premature but nobody remembers how premature because of all that was happening. My dad was even asked towards the end who to save, as it was coming to that point. She should have been airlifted to a hospital in Baltimore the night before I was born, but there was a blizzard (thus setting the standard for my birthdays to come – something *always* happens.) In the end, we obviously both survived, but her left kidney has about 50% function now. And then there’s her heart. Oh, her heart. She had triple bypass in 2003, after a couple years of other treatments (including a radiation seed in an artery!) but there were two other blocked arteries that were too difficult and risky to approach. As of a few years ago, there were at least two more blocked. Her heart is not well.
So, with a handful of very important organs not functioning fully under great duress after six months of crazy infections, she is at high risk for…well, a lot of stuff. Although it’s clear that simply draining the cyst and administering lots of antibiotics isn’t going to take care of the problem (since it’s been attempted for six months) she is going to need surgery. And she very well may not get strong enough to handle this type of surgery.
Anyway, back to the preparations. Mom can’t just “go to the hospital.” She has to have an insane amount of things done first. Clothes washed and packed, every imaginable item she could possibly need gathered and all kinds of other random stuff. Like now? She wants her hair dyed. Seriously. It’s 4pm and she kind of needs to leave. She was actually told to go to the hospital to be admitted yesterday but requested to wait a day so she could get some good rest (one never actually rests in a hospital.) But, uh, I don’t think the doctor planned on her coming in the following night. And there’s a really good chance that admitting will be ill-equipped to handle her if it’s late. Doctor’s orders may have expired, short staffing, confusion, etc. After 30 years of nursing she still doesn’t get this. Or care.
