Wednesday, May 30, 2007

keith dunn gulyas

I’ve mentioned that my cousin Keith was a medical researcher. I never knew what he was working on—he just said “I work with DNA.” My sister Kelly, who is a nurse and understands more about what Keith studied, told me I should Google his name, that I’d be surprised. So I Googled “Keith Gulyas” and now it hits home even harder what a loss it is that he died. About all I understand about proteomics is that it’s the study of proteins produced by an organism during its lifetime. But that’s all I understand.

I’m having a hard time fully grasping that he’s gone. I held him when he was a baby. I babysat him and helped him with his homework. We watched “Stromboli” together—that’s all that was ever on late at night and I think we watched it several times when I was sitting and he just couldn’t sleep. Neither of us understood it.

posted by lee on 05/30/07 at 07:53 PM

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i can bring him home thursday

Tomorrow, Day Ten—he gets to come home. Some time in the morning, we were told. So I will put Twitch’s blood test off until later in the afternoon and just head to the hospital. Oh how I hope nothing goes awry like the coumadin level or anything else. Still looks like the cause of this was all left over from the mess after the first valve replacement. If for no other reason, I’m glad Stanley is coming home so his damn cat stops yowling at me.

I am happy, but not too happy yet. I won’t believe he’s home until he’s home.

posted by lee on 05/30/07 at 05:45 PM

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he came, he saw, he left

Finally, an answer—no surgery this week. No vascular surgery. Looks like the clot is dissolving and Dr. Moroni wants to see Stanley next week in his office. If they do have to go in after all, they can do it at Norwalk Hospital, which is much, much easier for us. Don’t know yet if they can arrange things so he can go home today or if he has to wait until tomorrow. I’m wild to get him home. We’re just waiting for the nurse to come in so we can see what’s going on—should be pretty soon. I know there’s a lot to arrange, like the visiting nurse and the coumadin schedule and ... would so love to take Stanley home tonight.

posted by lee on 05/30/07 at 12:14 PM

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day nine

There are two plumbers in Stanley’s room right now, snaking the sink drain. I told Stanley that’s the same thing they’re going to do with his calf artery. The noise ... well, it’s better than the old woman screaming down the hall.

Stanley said yesterday that his idea of hell is waiting down in radiology amidst all the geriatric patients who were all alone, demented in many cases, and screaming in pain while at the same time he’s desperately trying to get someone’s attention so he could take an urgent—due to Senekot—dump before he had a horrible accident. A kind transport orderly rescued him. I told Stanley: “If I lose my mind, just let me go.”

We’re waiting for Dr. Manoni to stop by for a consultation on the clot blocking the artery in Stanley’s left calf. He’s supposed to give a definitive answer on whether he’s going to operate on it to remove the clot while Stanley is here, or if it’s not necessary now and Stanley can go home and maybe come back later, or maybe we can get it done someplace else. At any rate, his docs stopped the coumadin in case Manoni wants to do the surgery tomorrow or Friday. Other than waiting for that answer, Stanley could be home recuperating (or recoverating, as I said today—spoke too fast but it made Stanley laugh. Of course he caught it) instead of wasting a hospital bed. I think he’ll heal much faster if he’s home. Damn I wish that doctor would get here and let us know what’s going on—I’m so frustrated.

Took Slink in for his Bartonella test this morning, and will take Twitch in tomorrow morning (unless something happens). It takes three to five business days to get the answer. Today’s infectious disease doc, whom I just missed, said it definitely NOT the cats and more likely something left over from the first operation. They still don’t have a definitive answer, and it won’t grow.

Stanley had physical therapy twice today and is dozing at the moment. Yesterday really wiped him out, but in a good way (lots of exercise and hub-bub). They infused his antibiotics and whatever through his PICC line, so that’s working okay. He’s looking better and better every day.

When I go to sleep, I set the alarm clock so I can call Stanley shortly after the switchboard opens in the morning. I wake up about 20 times during the night to check the clocks to make sure I don’t oversleep, which means I’m not getting enough sleep. But last night it paid off—the power had gone off so I had to reset the clock and alarms. Tonight I’ll set my wind-up as well as my radio alarm—maybe that will be enough to let me sleep a solid night’s sleep. I woke up once last night with Ginger stretched out next to me—it felt good to cuddle with her even though she’s very doggy smelling (she needed a bath about two weeks ago!)

I brought some irises and peonies and some roses in for Stanley’s room. The peonies, which Stanley planted a few years ago, are gorgeous and smell wonderful—definitely superseding the usual hospital smells.

I will have to remember to get photos of Stanley’s zipper—it’s pretty dramatic—and as he’s pointed out, crooked. I think the crooked annoys him more than the staples. I’ll count them when we get home.

I just told Stanley that Monday, when I got home, the cats were agitated and the dog was as far from the television as she could possibly get and still be downstairs. Turns out Ben left the tv set on MTV2 and there was headbangers’ music blaring at them—usually I leave it on Animal Planet when we’re going to be gone more than a couple of hours. It was pretty funny to see the creatures’ reaction to that genre. Fortunately, no earbleeds. Speaking of music ... Mike, Ben’s grandpop, said Ben is a pretty good guitar player so I’m hoping he’ll play for us next time we’re in Boston.

Ok, to work ... I’m working on two store interfaces right now. Interesting, but now overdue.

posted by lee on 05/30/07 at 10:33 AM

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Tuesday, May 29, 2007

tuesday afternoon

Stanley continues to do very well. If not for the issue of the blood clot in his calf, he could go home today. The are still trying to decide if they need to operate or not. Stanley’s foot is still numb, so he really wants whatever needs to be done to fix it done. The clot in the kidney seems to be breaking up nicely, if it’s not gone entirely. He walked twice today

So, he might be able to come home tomorrow if they don’t operate on his leg, or maybe Thursday if they do and everything goes well. He got a PICC line “installed” today because the doc wants him on IV antibiotics for six weeks. They are taking no chances this time. Which means we’ll have a visiting nurse again, though not as often as we did two years ago. I’ve got to make sure the coumadin is going to be checked as often as he needs it checked ...

Tomorrow and Thursday I take the kitties to the vet to be checked for Bartonella and, if they have it, they can be treated for it. Treatment takes three weeks—so if they have it, they will be clear of it before Stanley is off the antibiotics. It’s not going to be cheap, but worth it for peace of mind. The culture is still negative for the cats being the cause of the broccoli on the valve. It looks more and more like it was something introduced during the first operation that just lay dormant until recently.

This is Day Eight. I’m so looking forward to having Stanley home and nothing we HAVE to do so I can get a good solid sleep without waking up thinking there’s something I should be doing. Jeff mowed our lawn yesterday, and Maureen and Ben cleaned up the kitchen and vacuumed the dust monsters—I’m still so surprised at how much better that made me feel.

Tonight I will try to get home earlier than midnight so I can spend more time with Ginger and maybe get a little more rest. I am just so tired. I keep thinking about Keith and my clan back home in Michigan since today was the funeral. That leads to more thoughts that could wind up in existential ruminations—and I don’t have the time or the energy for that right now.

I just have to keep reminding myself how lucky I am that Stanley got a clot in his kidney instead of a clot in his brain.

Mike and Florence came by this afternoon to visit and it was very good to see them—they cheered Stanley up quite a bit. And they left him a Tom Tomorrow book he is looking forward to reading just as soon as he can keep his eyes open—so much stuff happened today that it knocked him out. And I saw his latest pile of cheergrams—thank you!

I think I’ll try to doze off for a bit—if I can find a comfortable position is these godawful chairs they provide for visitors. They say they encourage visitors, but do nothing to make them comfortable ... I’m getting crabby, so I’ll stop now.

posted by lee on 05/29/07 at 12:04 PM

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Sunday, May 27, 2007

out of the icu now

Stanley was moved to room 738 today (Sunday). His neck tube was removed, and the blood pressure tube—a lot less plastic hanging out of various holes. He can receive calls and visitors and Monday I will take his laptop in so he can get email (hope it works—it’s supposed to).

Thanks to Sharon’s comment, I was able to be assertive about getting Stanley’s pain managed better (knowledge really is power!) His nurses today were good about making sure they showed up on time—if it goes as well throughout the night and morning I’ll be relieved and won’t kick up a fuss unless I have to. And I told the nurse to note in his chart that he is NOT to be gotten up at 6am to sit in a chair like he was last time.

We don’t know yet if they’re going to operate on the calf artery to remove that clot. And I don’t know yet how long he’s going to be in—he hasn’t started walking yet though he did sit in a chair today. He would like to walk so he could use the bathroom instead of the piss bottle. I’m relieved he’s doing better this time—I was worried that he wouldn’t be able to handle a second surgery is just over two years but, other than the problems he’s been having, he’s damned healthy.

So far, the valve broccoli is negative for Bartonella (cat scratch fever bacteria). It’s not definite yet, but it’s looking that way. We will both be very relieved if the kitties are exonerated, but now that we know that Bartonella can cause valve problems and potentially death, we’re going to be very careful. I still have to find out if there is a test for Bartonella the vet can give our cats and if there is a way to eliminate it from them if it is present (update: the vet can test for it, but it’s expensive. Cats can be treated for it too, but it’s tricky.) I know it’s passed from cat to cat via fleas—but our cats are indoor kitties now so maybe they’re negative and it won’t be a problem ... I want to talk to Dr. Lobo about it as he has a prosthetic valve and a cat.

I still suspect the broccoli started when the staph was introduced during the initial operation and just lay dormant for a while. We know that it was throwing clots at a minimum of six weeks ago since that’s when Stanley got the unending charley horse in his left calf. It could’ve been the infection Stanley got last December/January that triggered it. We’ll probably never really know the root cause.

Okay, headed to sleep.

posted by lee on 05/27/07 at 09:36 PM

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Saturday, May 26, 2007

saturday report

While Maureen and I were getting ready to go to the hospital to see Stanley, we got the call that our cousin Keith died this morning. We knew it was coming but it was still like a knife twisting in my heart. Just 42 years old. I feel so bad for my aunt and uncle and his wife and their son and Keith’s brother and sister. I wish I could have known him better as an adult.

Stanley is still in the ICU. Mainly, I was told, so they can get his blood pressure and heart rate under control. His “normal” blood pressure is about 100/60 and it’s been ranging from 145-165/90-100+. Same deal as last time. He also got some beta blockers and many other things. He said the pain from his “incision” hurts worse than he remembers from the last time—we figure it’s because they had to dig the wires out of the bones or something.

He thinks he’s doing worse than the last time—I told him he’s doing better, because he is. His nurse today, Ben, started giving Stanley the “pain is good” spiel and I could see the look on Stanley’s face—I know he was thinking “look you asshole, you get your chest ripped open and fifteen tubes stuck in your body and THEN tell me pain is good ... ” I pretty much agreed. Ben later admitted that he’d never had surgery of any kind. He’s young. But he told Stanley he wanted to keep the pain level at around 5 (out of ten). Why, he didn’t specify. I told Stanley to just lie. I know you have to be at least somewhat aware of what’s going on in your body—but 5? Why?

Ben also told us Zane Saul is the infectious disease doc charged with figuring out the source of the broccoli. Oh great—the one doctor we both detest. He’s the guy in charge of preventing infections and it was under his watch that Stanley got the staph infection. Then he was exceptionally rude to us when we had to go to his office to get the infection checked—kept us waiting for two hours and nasty to us when we complained. Ah well. (Also encountered PA Ryan again, but I was polite.)

Maureen went home so she could make arrangements to go to Detroit for Keith’s funeral, which Dad said is on Tuesday. What a nightmare this month has been.

I’m hoping Stanley gets moved to a regular room on Sunday. Early.

posted by lee on 05/26/07 at 08:19 PM

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quick update - the tube is out!

Stanley is now breathing on his own—it took several attempts to get it out but it is now. He’s still in intensive care and we won’t know if he’s being moved to a “regular room” until his doctors make the rounds after they get out of surgery this afternoon, which should be around 2 or 3 this afternoon. The nurse said his vitals are fine but he’s still in a lot of pain so he is mostly sleeping as she gives him his pain meds. So Maureen and I are headed up to Bridgeport Hospital in about an hour. I need to hear his voice.

posted by lee on 05/26/07 at 08:53 AM

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Friday, May 25, 2007

a mystery

Stanley got a new moo valve Friday. He went in at about 9-9:30 and was out at 2:30ish pm. As I write this at about 2:30 am he is in the surgical ICU at Bridgeport Hospital. The cheer grams that he’s received so far were pinned to his bulletin board when he arrived on that unit. I read them to him and he smiled around the tube, but he was a lot nuts with morphine and pain so I’m sure he will want to read them for himself again. So he’ll get two smiles out of each of them—thank you!

When I left the ICU Friday evening, it was after an unsuccessful attempt to remove the breathing tube. Every time he dozed off, he stopped breathing. When I called at 10:15, they’d tried again, but no luck. Last time on the tube, it was very difficult for him as well so I’m not surprised. It was very hard to watch the struggle—I was glad to flee this evening and leave him to the nurses and respiratory therapist. But he was much, much more lucid when coming out of surgery than he was the last time—well, as lucid as you can be with a tube stuffed down your throat and pain at 12 on a scale of 1 to 10.

The operation went like clockwork and well, according to Dr. Robinson. I’m not sure when Stanley will be on the telemetry unit—hope on Saturday (likely) because that means no complications. He may not need the roto-rootering of his calf since his foot pulse is getting stronger each day.

The surgeons sent the broccoli off for culturing. The primary suspect is still Bartonella, though which strain, or even IF it’s Bartonella (cat scratch fever) is still a mystery. Whatever it is, it’s still one for the record books. Stanley keeps saying we’re in our own episode of House. At least I finally washed the dishes in the sink so that when Cameron and Chase show up to snoop, they won’t make snide remarks about it.

What really, really sucks about this is how unprepared I am for it. Last time, we knew in advance so we could clean the house up in advance, make arrangements about work stuff in advance, get all the bills dealt with. This time, none of that—as I was washing the dishes I was feeling very overwhelmed by it all, by the thought of having to manage most of our life on my own for the next few weeks, like taking out the trash and recycling and mowing ... though mowing sure beats shoveling out from yet another blizzard as I had to do in February 2005. I lost some weight then and the good news is that I’ve lost a couple of pounds already this time—just from walking all those corridors and trips to the parking garage. (Would rather just walk around the backyard a lot.)

I am glad my sister Maureen made the trip down to help me. I wouldn’t have been able to drive home Friday evening—at least not without some sleep, which would be hard to get in the incredibly uncomfortable waiting rooms at Bridgeport Hospital. So we atw dinner at Wild Oats (I had a wonderful pannini with pesto sauce, tomato, and mozzarella) and brought home decadent things for dessert (bear claws for me) and watched tv and talked. Which was good. Don’t get to talk with her as much as I like to.

I’m so tired everything looks blurry and my eyes are crossing. More when I can ... just very glad he’s on the “getting better” side of the ledger. Finally.

posted by lee on 05/25/07 at 10:27 PM

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Thursday, May 24, 2007

another valve job

Stanley was transported to Bridgeport Hospital because he needs to get his valve replaced. When they did the weird echo where they looked at his heart from behind via the esophagus (I just remembered: transesophageal echocardiogram) they found that there was a vegetative growth hanging from the bovine valve he received two years ago. This is what is throwing the clots. So Friday morning bright and early, open heart surgery again, new valve. And they’ll probably fix the calf artery as well (removing the clot).

The same surgeon, Dr. Robinson, as did the first valve job was on hand, along with a cardiologist and an infectious disease doctor (Dr. Lobo, whom I remember from last time and like very much). We are glad Dr. Robinson is handling the surgery—we both trust him a great deal. And they’re being super cautious about making sure Stanley doesn’t pick up any staph infection this time. He will go in for the surgery after they do an ultrasound on his carotids to make sure there are no blockages there—he went tonight, but the doctor who tried to do it because the techs go home at five just threw up her hands—she reads them, she doesn’t do them. Can’t say that I blame her.

I saw the growth this afternoon when they did an echocardiogram. It looks like a piece of string flapping in a strong stream. It’s about 4 centimeters (about two inches) in length. At Norwalk Hospital, they don’t think it’s bacterial, but maybe fungi. At Bridgeport, the leading theory is that the kitty did it—that Stanley got a bacterial infection when one of the cats scratched him. Another theory is that it was left behind after the staph infection two years ago and just recently got ugly. Or it could’ve been from a sinus infection. After they get it out they’ll do what they do to figure out what it is.

When they transported Stanley to Bridgeport, they did not send along the trans. echo CD with him. I don’t know why. So Dr. Robinson sent me off to go get it from Norwalk Hospital. Getting back to Bridgeport during evening rush hour took me a little over an hour for a less-than-20-miles trip.

Oh, I forgot to mention. Having broccoli growing out of a prosthetic heart valve, or even a real one, is rare. So yet again, Stanley makes himself into a publishable subject. Again, go look up “aortic valve vegetative growth” and see if you can find any articles in layperson English about it. I couldn’t (and if you do, please send me the link, I really want it).

Stanley, by the way, loved getting the cheergrams during his last surgery two years ago so much I’m asking folks to send one again: http://bridgeporthospital.org/CheerGram.asp—his full name is Stanley Thompson. I hope this is the last time he’ll need them.

More later, have to get up very early so ...

posted by lee on 05/24/07 at 09:19 PM

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