This was the last post I made to CaringBridge. I started writing another but it never made it out of Draft form.
Teresa has been partially discharged. The kidney doctors have discharged her because her creatinine is normal, as are sodium and potassium, but they won’t print out the labs, and they won’t release them into MyChart until she’s fully discharged, so I have no idea if it’s borderline normal or in the middle normal or what. That is super frustrating. (Sometimes the nurses will show me on the computer, but I can’t write ALL of the labs down easily, so I can’t track her progress myself either, which I’d really prefer.)
Also, no one has mentioned what her eGFR is (kidney function). It should be above 90. Hers was 24 on admittance last week. I don’t know how long it takes to recover that.
She will have to see Dr. Beard (the surgeon who placed the ureteral stents) in 6 weeks for follow-up, and to have the stents replaced to minimize risk of infection or them getting blocked.
Her blood pressure was 120/80 this morning, and her color was a lot better. She’s completely weaned off of the pressors and of the dilaudid. Her pain is being controlled by oxycodone (without Tylenol).
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They’re going to see if someone can drain her PleurX catheter since it hasn’t been drained since last Wednesday when Dr. Fernandez did it for her (750ml, stopped on its own). And we’re trying to find out if someone can see about doing a paracentesis in case there’s any fluid in her abdomen. The last CT said there might be a little. Any less pressure would be a plus.
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Since the kidney doctors have discharged her, there’s no longer a fluid intake restriction. And we got a numbing spray for her throat yesterday to make swallowing more comfortable (it is sore from the airway they did for surgery). But she’s still not eating a substantial amount. I realize that the kidney failure, combined with the anemia, and the pain medicines, led to depressed appetite, but I also know that she’s still dealing with the cachexia (involuntary anorexia) which can become even a bigger problem than the cancer itself, and she MUST get her weight back up or it will be very hard to get further treatment for her.
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Sorry this is a little out of order. Without the usual lab paperwork to go by, and our sleep schedules being way off, all of the days have run together.
Yesterday we got her a blood transfusion. (1 unit) I still think she needs another one as she’s still under 9 (11.7 is the bottom of normal), but it did help. Her color is better and she’s somewhat more alert — for everyone else; not so much for me.
She’s still having some cognitive issues (sporadic hallucinations, for example). A great charge nurse, Betty, got her a better bed the other night (it moves to help prevent bed sores). T was already getting a bed sore, but hopefully it was caught early enough and they are treating it. The new bed should help with that going forward.
Legs: They are a much more normal shape and size; the medicated compression wraps are doing a good job at getting the fluid up above her knees, and with her kidneys working, flushed out like should have happened all along. But her skin still looks terrible. They changed the bandages today. With the amount of fluid her legs are still weeping, she will probably need that done every other day at least, if not every day. The wound care doctors plan to move her up to higher compression soon (within the week, I think).
As far as her legs go, she is not discharged, which is good, because we wouldn’t be able to take care of them properly at home, and then she’d be back where she was. I’m not sure how they plan to resolve this long-term though, because as long as the tumor is still blocking her lymph system, this is going to keep happening.
But the only surgeon I know of who probably has a chance of really getting it out is in NYC, and before she sees him, we think she should have the Proton Beam therapy in Georgetown (NoVA) to get the tumor margins away from her organs as much as possible. This, in theory, will make surgery safer.
But she has to be stable enough to travel, and stable enough to survive both procedures — which means she has to get her body weight back up, as the tumors have decimated her body fat and muscle. This is an unfortunate, but common, complication of many cancers, especially when it is advanced cancer.
She is still very much interested in having visitors, even if she isn’t 100% responsive when visitors are here. But she tries!
Please be aware that she does NOT look like herself. But please don’t let this scare you out of visiting. She’s going to continue to have bad and better days. The photo on this post is from a better day. We’re not quite at “good” yet. Come anyway. This last week should show you that waiting until things are great could mean not getting to come at all.
She has a super aggressive cancer that has not responded well to past treatment, and then all of this happened. She is still very tired. But don’t say you’ll wait until she’s not tired, because that might never happen — or it could take many, many, many months.
Phone calls are difficult for her because she can’t hold up the phone — if nothing else, because of all the wires she’s hooked up to, but she loves having people come see her in person.
The only restriction we have is as before: If YOU are sick, if someone IN YOUR FAMILY (at your house or that you see regularly) is sick, or if you have COWORKERS who are sick (or who have sick kids), you cannot visit at this time. Catching something could set Teresa’s recovery back weeks or more. Or be fatal. TY for understanding.
Please contact me first before showing up, just in case. (Especially if you’ve never been before because you’ll need someone to lead you back into the right ICU area.) There’s also a 2-visitor maximum at any given time.
We don’t know yet if, with the kidney discharge, she will be moved up to a regular room or not, which will be less restrictive on number of visitors (but not on health of visitors).
I’ll post again as soon as I can.
Please ask if you have any questions.
Edit: Just learned (6:50pm) that she had 1 dose of dilaudid tonight for something. I don’t know what or why.
