12 March 2022
Joyce had a busy week, finishing her one-hour morning antibiotic drips, meeting a new physical therapist and a social worker, getting four hyperbaric oxygen treatments and three dressing changes. I had a busy week too, talking to Alexandra the Scheduler, Dr. Tong and Cat the Physician's Assistant as we keep trying to find some way forward for Joyce.
Here's a summary to keep you up to date:
TUESDAY
Rhonda the Physical Therapist from Georgia arrives at 9 and is very nice, sympathizing and encouraging Joyce. She thinks it would be best to involve Julie again, since she had been working with us (and they are very protective of their clients0. So she just confirms the therapy is necessary.
She happens lives in Glen Park and hikes the canyon to Twin Peaks, marveling at all the coyotes and the owls nesting near the top of the canyon. When I askedher about the KT tape Julie had showed us, Rhonda tells us she was able to hike Half Dome with KT tape on her weak back. But for some things it just doesn't help.
She left at 9 so I was able to get the drip going at 9:30, right on schedule. An hour later, we were done. The checklist is a big help.
The mail has a big box from Carol full of clothes. Big Sis realized Joyce hasn't had a chance to go clothes shopping in a while.
On to St. Francis at noon. It's a half-hour drive and it takes about half an hour to prep Joyce to enter the chamber. That gets her started by her 1 p.m. appointment time. They aren't at all religious about it, fortunately. If you come a bit early or late, it's fine.
I have to have a paper mask because it's disposable the guard explains. Oh.
I let them know Joyce had no ear problems (like itching) last night. They're delighted.
After they struck out yesterday showing her three Netflix movies she didn't like, we brought in a Montalbano DVD. They put the first episode on for her and she loves it, smiling for two hours. It's a big help in getting through the session.
Jessica the RN tells me that in light of my concerns about her memory loss, they can do a series of cognitive tests after sessions twice a week. The therapy enhances oxygen to the brain as well as the wound and can improve brain function. The tests will show if it does. I tell her that Brenman was talking about doing just such an evaluation but it wasn't convenient at the moment, so this is great.
But it turns out she can't start the series until Thursday because she has to leave early for a doctor's appointment.
Kathy the LVN has been working there for four years, as long as she's been married. Her husband is Italian, the family from Lucca. And she is from a Russian family, born in Ukraine herself, so her son is learning Italian and Russian.
WEDNESDAY
I start her drip at 9 a.m. so I can get to my mother's early and make it back by noon to get to St. Francis.
But Kathy calls to say the unit is closed today. Some kind of technical issue is involved, she says, but we can resume tomorrow.
This turns out to be a blessing. I fill the car up with gas at Costco (for %5.19 a gallon, about a buck cheaper than the surrounding stations and up 13 cents over night) and do the food shopping for the week at Trader Joe's after taking care of business for my mother.
I'd asked Vic the LVN to come at 4 p.m. to do the dressing change because she had the drip in the morning and the hyperbaric chamber in the afternoon.
So Vic calls to see if we're home (he was waiting in his car and didn't see anybody drive up) and comes in at 4 p.m. I tell him our session was canceled so we were here.
He gets the dressing off easily. I had to remind Joyce to take her pills at 3:30 when I suspected she hadn't taken them at 3 p.m. on schedule. She's not taking her pills but if you ask her she says she is. Maddening.
Her blood work from Monday was fine, though, she told me earlier.
Anyway, he labors over putting the drape on, strip by strip, as if he's making a paper mache volcano. And the Wound VAC has a hard time getting to pressure. But it does. So we're set until Friday.
He tells us Donna the RN is Russian. So we have a Russian RN and a Ukrainian LVN. Both with four-year-old boys. Donna has a strong accent but Kathy is American as baseball when there isn't a lockout.
I decide to email Dr. Tong that Donna the RN would remove the midline Friday if she has an order to do so. Or should she leave it in?
THURSDAY
I most of the morning trying to get into the shower. I get Joyce's drip going at 9:30 but we get a series of phone calls first from Alex the Scheduler trying to set up an appointment with Dr. Tong at the clinic next week instead of at the end of the month.
But Dr. Tong is only available on all the wrong days at all the wrong times. So Dr. Tong herself calls and I chat with her a while about where we are and where we can go from here.
She isn't convinced the hyperbaric therapy will be any use. The antibiotics are what's preserving the tissue, she says, and we can't keep relying on them. Antibiotics are a short-term strategy.
She said she thought the wound looked good from the photos but I tell her the yellow slough is back with a vengeance.
So we set up a Tuesday meeting with a probable Friday surgery at the hospital. Which necessitates a Covid-19 test on Tuesday, too. So on Tuesday we'll see Dr. Tong at the clinic first, get the drive-through Covid test at French Hospital after and then go to St. Francis with a wet-to-dry dressing.
No one can come to put the Wound VAC dressing on Thursday (in-home nursing is limited to three visits a week), so I may do it myself. The gruesome part is taking the dressing off and Dr. Tong will already have done that. The wet-to-dry dressings by the clinic staff are more temporary than they might be.
I decide to do a checklist for Wound VAC dressings. I'm always advising the nurses and checking their work step-by-step anyway. It's so easy to forget something like putting tegaderm drape under the bridge the black foam it doesn't macerate Joyce's skin there.
But I take a shower first.
We bring another Montalbano episode to St. Francis with us. Tburman, the director, has an awful time finding a remote to control the DVD player. He tells me about a former employee who would walk off with things.
But the ladies tell him they only have two brands of DVD players for the four chambers and only one of them (Joyce's) is a Sony, so he has to use the Sony remote.
I mention the possible Friday surgery to Kathy. She's in charge of scheduling and appreciates the heads up. They may be able to move her to the morning, at 8:30 a.m. We'll know more next week, I point out, but I wanted to know if there was an option to do this at a different time.
Kathy tells us she was born in Ukraine but has never been to Russia. And now would not a good time to go now, I sympathize.
Jessica mentions she heard I am Italian from Joyce and says she's 15 percent Italian herself, showing me her name badge 'Codispoti.' Calabrese.
She tells me about the 88 year old woman she cared for who could not remember what you just said but could go on for hours about the past. I tell her my 94 year old mother is like that. We laugh about it. But there are stories you tell yourself over and over so you never forget them.
She gives Joyce the cognitive test. Joyce does well, surprisingly so on some things like drawing two interlocking pentagrams. But missing some obvious ones like what the name of the hospital is and what city it's in. Which about sums it up.
As we're about to go, the Wound VAC races. Jessica thinks the leak is in the butt crease. She happens to have some drape and patches it. She hasn't done Wound VAC training yet but it's coming. She's clearly not used to using the stuff but I advise her and she patches the leak fine. I congratulate her. She had been worried enough to suggest getting the staff wound care nurse if she was available but she did the job herself. [Applause]
We drive home just a bit late for Mae Wong the Social Worker, who is parked in front in her white Mercedes. How does a social worker have enough money for a Mercedes? She's also a psychological therapist. "Medical Social Worker," it says on her card.
I text her at 4:10 to see if we're still on and she comes right in. She had an emergency she was dealing with on the phone.
She's very nice and complimentary (lovely home, peaceful, she says) but not much help. There are free resources for daily skilled nursing in short shots. A four-hour minimum is typical for adult care, which is not quite the same thing as skilled nursing (required to change a dressing). She suggests Kaiser might be able to supply a nurse during an emergency.
But we don't know what we will need. My concern is that if Joyce has to live with tow-a-day wet-to-dry dressing changes the rest of her life and something happens to me, how will she get them done?
There is no answer to this question.
FRIDAY
I had agreed to start Joyce's last I.V. drip a half hour early so Donna the RN could come at 9 a.m. instead of 4 p.m. to remove the midline (she did get the order from Dr. Tong) and change her dressing.
Just before nine, I remind Joyce to get dressed so we can start the IV drip. And she does. I sit with her a few minutes, flipping through the Costco magazine (which has an article about a new kind of car battery that uses fiberglass instead of liquid). She tells me she forgot to take her pain medication. So I get that for her and then I see she hasn't been taking her oral antibiotic at all. So I start her on that. I thought she had been following the instructions.
Just around 9:45 Donna arrives, quite a bit early. But the drip is almost done. I ask her if she wants me to flush it but she says not to bother. She asks me if we had any trouble with the tubing. Nope. She has a patient who couldn't get the fluid to flow through it. She replaced the tubing and it was fine, though.
She takes the midline out first. I'm surprised how short it is, less than six inches. Keep the dressing on for 48 hours, she says.
Then we go into the bedroom to change the Wound VAC dressing. She's delighted by how easily it comes off with the petroleum dressing.
We both take photos. I take two closeups for Tong.
She layers two medium-sized black foams (there's a shortage of the large ones) to fill the wound after framing it but forgets the tegaderm under the bridge until I remind her.
And that's it. She covers the lily pad with tegaderm and adds a patch on the main foam and we get suction.
We have an hour before we go, so I edit the wound photos and send them to Tong.
We get to St. Francis right on time. It's amazing that you can navigate so many city intersections and traffic lights and always take just the sam 30 minutes.
They are doing some construction next to the therapy room and it's noisy. Thurman tells me I can take a powder if it bothers me. It's been going on since 8 a.m., he says. It clearly bothers him. He's an upbeat guy having a downbeat week.
I check the news and then sit with Joyce as she watches The Kite Runner, which Kathy read. "Powerful," she says. I try to follow the movie and try harder to remember it.
I take off my coat for a while and hang it on the back of my wide chair. Kathy comes by to ask me if I mind if it's touching the floor. No, but thank you. They really are sweet.
Cat calls while I'm sitting there. Just checking to see if the midline was removed. Yep.
I ask about the Friday surgery schedule and she sees Tong still has two scheduled in the morning. So we might be able to do an 8:30 a.m. session at St. Francis before checking in at Kaiser.
I mention the photos and she retrieves them.
"I"m trying to keep a couple days ahead of Dr. Tong," I tell her. She laughs. "We all are."
Thurman offers me a cookie whose frosting has been printed with their logo. A client had a tin of them made. I don't dare, of course, but thank him.
He goes home early. Jessica validates my parking.
When Joyce comes out, she's shocked she has to do 60 treatments, refusing to do any more. She says she thought this was the last one, which can't be true. I've gone over and over it with her.
But they calm her down, both of them, reassuring her and telling her to take it one day at a time. They're very good and when Joyce goes to change, I compliment them.
Joyce rang the buzzer because she couldn't get the locker to open. Kathy says you have to jimmy it like a high school locker.
I do ask them about the pressurized chamber raising blood pressure. Everybody is different, they tell me, but yes, it tends to raise blood pressure temporarily. Joyce's numbers going in were normal but high coming out. Which is why I asked.
Jessica says the therapy can be beneficial for edema as well as cognitive ability. Another talking point if Joyce complains about it.
I tell them about my chat with Cat and reiterate we'll know more on Tuesday.
And off we go to get the car and drive home in what is light traffic.
SATURDAY
No more drip. Hurray. And she took the antibiotic pills without a reminder. Yippee.
Kathy had asked us if we had any exciting plans for the weekend. I guess this is it. A weekend without the drip, a dressing change or a hyperbaric session sounds pretty exciting.
Next week will be an entirely different adventure. If we're lucky, Dr. Tong will opt to skip surgery for the moment. If not, Joyce will be back in the hospital Friday for at least an overnight stay.