Is pouchitis even a real word?

After days of steady progress, Caren has developed pouchitis. When I first heard it, I thought it was like one of those words Scrabble players insist are legitimate words in the English language to hit the triple word score on me. It sounds just plausible enough to make me think about it, but every ounce of logic is screaming, "She's trying to cheat again!"

Well, it turns out, pouchitis is a word, although it's entirely meaningless unless you are one of the select few that have a pouch. The pouchless millions of us out there simply get gastritis or gastroenteritis or some other delightful, lower GI tract infection. Caren ended up with an infected J-pouch. Apparently it's a fairly well documented complication of the surgery. Somewhere close to 75% of J-pouchers (that may actually be a completely made-up word, but it sounds just about plausible in context...right?) end up with pouchitis at some point. It's more common after recent surgery. Some patients develop what they call, chronic pouchitis that requires almost continuous antibiotic therapy to keep it in check. Sounds like fun huh?

In rare cases, the chronic pouchitis fails to respond to the antibiotics and the pouch must be by-passed in favor of a permanent ileostomy bag. Wouldn't that be fabulous? There is nothing about Caren's current infection to suggest that it's anything but a run-of-the-mill pouch infection that will resolve after 10 days of Cipro. We'll see. She's been on the antibiotics for a few days now. The discomfort is gone, but the fever still pops up every afternoon/early evening.

I remember a doctor, I'm not sure which one now, telling me that it's not uncommon for certain symptoms to present at predictable times of day. It has something to do with cyclical fluctuations of natural Cortisol levels in the body. Everyone has a personal rhythm and when the levels hit their low point, around late afternoon/early evening for most of us, your body is less able to keep infections and other chronic ailments at bay. So every day between 5pm and 7pm, Caren develops a low-grade fever. She can feel everything start to ache and within minutes, she has the chills. I know my own sinuses flare up either late in the afternoon or very early in the morning. My own Cortisol cycle must dip again between 5am and 7am.

The best news we've gotten in the past two weeks is that her surgeon has returned from his well-deserved vacation. Dealing with a primary care physician, at least our PCP, has been a nightmare. No offense to any of the docs that may still be reading the blog, but we had more trouble getting Caren's coumadin doses monitored in the last 2 weeks than Obama had getting "health care reform" past Congress!

Fighting with the lab, fighting with the nurse, nothing went smoothly. Caren actually gave up and never followed up with him after her last two blood draws. She just maintained the same dosing regimen and hoped for the best. I made my quiet protests, but what can I do? The guy wouldn't call us back, his nurse has her PhD in running interference and not being helpful (I think I mentioned her in previous posts), and when we get through to the doctor, the lab has suddenly decided that the order that has been run STAT for 6 weeks is now routine and the results won't be available until tomorrow...at the earliest! It boggles me that, the country that supposedly leads the free world, can't develop an idiot-proof means of communicating critical medical information. How about a package to stimulate some doctors to give a damn again?

I teach my Paramedic students , training to enter what is arguably one of the lowest rungs on the health care ladder, that if you want to earn the respect of your patients, you need to find and address what is most important to them. It may be their ailment, their injury, their child, their pocketbook or maybe even their pomeranian. But if you fail to figure out what is most important to them, they will never trust you fully, and without that trust, you will not get their respect.

The power of the doctor-patient relationship has always rested in the absolute respect that doctors have historically commanded. Respect for the knowledge and the training required to achieve it, and respect for the responsibility assumed when caring for the sick and injured. However, at the end of the day, respect must still be earned, and if physicians continue to take it for granted that their patient's respect them, that respect will disintegrate.

Medicine is a human-service industry, and like a restaurant with crappy waitstaff, patrons will go elsewhere. I don't know if my doctor just has too many patients, or maybe he's lost his zeal for the job, or maybe he's more interested in which ER nurse will be his next conquest. Regardless of the reasons he can't seem to figure out what's important to his patient(s), he certainly has a limited number of opportunities to prove to me that he and his staff really care about me and my family.

Another week, big improvements!

We've come quite a way in the last week. Last Thursday, we spent the entire day at the doctor's office looking for mysterious infections to explain the pain and discomfort Caren couldn't seem to shake; this Thursday, Caren had dinner cooking when I got home from work! Considering that last week walking to the bathroom was still a death-defying event, cooking a meal is our equivalent of walking on the moon!

After all the running around last week to get the CD-Rom with Caren's CT Scan in the hands of her surgeon, he still didn't get it until Monday afternoon. I'm so glad I paid the extra for overnight shipping! We had our suspicions that we were not dealing with an abcess, mainly because by Sunday she had been on the Levaquin for 5 days and was feeling considerably better, but it was still good to have the surgeon offer his assessment of the scan.

Most of his concern regarding the presence of an abcess disappeared when he read the Radiologist's report which stated that: "...the small and large bowel appear normal." It was apparent fro mthe get-go that this guy had no clue what he was looking at! I'm really not sure which part was worse, the fact that he thought the small intestine attached to the rectum was "normal" or the fact that he "saw" a 4.5 foot long organ that didn't exist. If a highly trained, experienced medical professional can see a phantom colon, I'll stop wondering immediately how sightings of Big Foot and the Loch Ness Monster continue to occur! Further proof that reality is based primarily on perception (not fact) and people see what they want to see.

Caren still can't lift the kids, but in many ways, life is returning to normal. We'll probably have at least one more week of help during the day; maybe next week she'll give it go on her own.

The only outstanding medical issue we can't seem to resolve is her clotting factor. It's been a month now and we still can't get her coumadin dose therapeutic. Her surgeon has been altering her dose every Tuesday and Friday since she left the hospital with limited success. I honestly don't think we've had two consecutive sets of lab values even close to each other. Now, with her surgeon on vacation out of the country for 2 weeks (oh, I know, great timing right?), her primary care physician has agreed to follow her INR. Not that he isn't capable of reading the lab values and making up a dose for her coumadin, which, by-the-way, is anything but scientific. As far as I can tell, it's completely made up on the fly. However, a PCP is just not used to contacting patients at home in a timely manner, or maybe it's just our particular primary doc. Which brings me to my last thought for the day.

Our primary care physician has a nurse that works for him as his primary assistant. On one hand, I've never gotten any "warm fuzzies" from her, on the other hand, she's never been outright rude to me either. My best guess is that she's one of the brilliant clinicians that got into medicine without the benefit of actually liking people. It may sound preposterous, but there are plenty of medical providers that manage patient's without the slightest degree of empathy. Who knows what motivates them, but I can assure you it's not the ceaseless plight to make people feel better! So this nurse clearly falls into this category, maybe she's the President of CWC, Care without Caring! (Note: I do not have any knowledge of this group actually existing, although if it did, there would be no shortage of charter members)

Caren had her blood drawn yesterday morning and was waiting all day for the doctor to call with the result and subsequent dose for her evening coumadin. All of her lab work is entered "STAT", meaning the results are available later the same day rather than a month later. She waited until after 4pm, knowing that the office would close at 5pm and the entire staff, docs and all would disappear until Monday. When she called, she had the pleasure of playing 20-questions with the CWC President, before having to say, "There's no need to be RUDE!" After that, Caren got her dose and the conversation ended rather quickly. It just confuses the hell out of me that someone would go through all the training, pass all the exams and choose to work in a people-oriented, service industry without even the slightest inclination to be polite on the phone with a patient. Maybe she should move to the OR where the patients are unconscious!

Are you kidding me?

In an eternal effort to eradicate every possible dull moment from life, Caren spiked a fever on Tuesday evening. In all honesty, her health has slowly declined since seeing the surgeon last Friday. At first we thought is was just the harrowing trip to Mt. Sinai that had wiped her out.

After nearly 8 hours of traveling for the follow-up appointment, she spent almost 48 hours recovering. Saturday and most of Sunday last weekend was a complete wash. In retrospect, we now know that it was an infection getting a handhold and carefully deciding where to set up shop. She continued to feel run down through Tuesday when it really hit the fan.

There I am proctoring my summer class' final exam and up pops an innocent IM from Caren: "I have a 101.5 fever." Here's where my initial dismay over the fact that we have signs of an infection turned to near rage as I find out that the symptoms of her urinary tract infection never actually went away! Oh yeah, I can see you sitting out there, rocking back in your chair saying, "what does he mean, the symptoms never went away?" Well, let me tell you that I was as surprised to get that tid bit of information as you are! Caren, staying true to the stereotype that medical professionals make TERRIBLE patients, decided that the whole, lack of urinary output, pelvic discomfort and painful urinations, WASN'T THAT BIG A DEAL!

Ok, I'm past it, just needed to get that out of my system...thank you all for receiving my rant, I'm better now. Oh, wait a minute, I knew there was something else that fired me up about the whole situation...I had to threaten to call the surgeon my self before she agreed that informing him of her symptoms would not be considered annoying. She didn't want to pester him! Somehow, I thought that, maybe, just possibly, he might be interested to hear that a post-surgical patient, who happens to have a single kidney, was experiencing signs and symptoms of a urinary tract infection, including a fever higher than 101! On a side note, I've recently learned that 101 is some magic number in medicine. A fever less than 101 to a doctor is kind of like a solid "C" student to a teacher, their there, but certainly nothing to write home about, but I digress.

The bottom line is that I was right! (There I said it) Caren called the surgeon and within the hour was on Levaquin. We hoped that that would be the end of it, but oh how wrong we were. Yesterday afternoon, after 2 doses Levaquin and absolutely no improvement, I convinced her to email him and see if she should see her primary care physician up here. He called a short time later and gave the OK.

Fortunately, we were able to get a 9:30 appointment this morning; fortunately because of what was potentially discovered and for how friggin long it took! At 9:30ish, Caren was peeing in a cup at the lab, figuring that a UTI would be proven, beyond a shadow of a doubt, the Levaquin would do it's job, and soon we would be back on the road to recovery. After leaving her deposit in the lab, we reported to the third floor of what can only be described as a colossal medical associates building. I should remind everyone that Caren hasn't seen her primary care doctor in a while, so we knew we were going to have to catch him up on the latest developments. If only I could have gotten a picture of his face! It went something like this:

"So I had a colectomy last month and instead of spending 5 days in the hospital, I was there for 11. And while I was there, I had a massive urinary tract infection, that they put me on IV Zosyn for. Oh yeah, did I mention that they found a clot in my hepatic portal vein?"

I was watching his face at this point in the interview and his eyebrow nearly jumped off his face!

"And when they did the initial surgery they saw a polyp on my gallbladder and they took that out too." I think he actually shuddered, as in he had a momentary loss of voluntary muscle control. But, being a true professional, he recovered well and, without missing a beat, turned to me and asked, "How have you been?"

He was good, he took it all in stride. It helped that I've known him since I was a teenager and he is well aware of our medical backgrounds. He reminded us that coming into the situation at this stage means that he has to rule out EVERYTHING! And so the testing began. We went back to the lab for urine cultures, blood cultures, a CBC, I think they even stuck a swab in her belly button to be safe. I was afraid they were going to attempt to swab me, but my "Don't Fuck with Me" tattoo must have been visible through my flowing locks of golden hair (hey, a guy can dream right?), so they left me alone.

In addition to having every surface of her being, both inside and out, combed for a microbial presence, he wanted to have a CAT scan done to rule out anything in the abdomen. So, after spending two hours drinking two humongous bottles of "Creamy Vanilla Smoothie" barium, that, incase you were wondering, tasted NOTHING like cream, vanilla or smoothie, Caren got her scan.

About 45 minutes later, we're in an exam room 2 floors up and I hear him say something about abcess and my head started spinning. I remember thinking, can this get any worse? The Radiologist saw what he thought could be an abcess in her mid-pelvic region; the exact area where she continues to have pressure and pain. I wanted to thank him personally for being as vague as was humanly possible, but it was probably safer for everyone that I steered clear. Our primary care physician told us that we needed to see a surgeon, but we could choose whether to see a local doctor or go back to our original surgeon. We were actually able to get her surgeon on the phone from the office and let him know about the findings.

Clearly he wasn't happy to hear the words "abcess" and "mid-pelvic area" spoken together regarding one of his recent surgical patients. He did mention that Radiologists often have difficulties reading scans of J-Pouch patients, and it wouldn't surprise him at all if the "abcess" turned out to be part of Caren's newly re-arranged internal parts. He was cautiously optimistic when he instructed us to overnight the CD-ROM with the CAT Scan results to him. He wanted to see the scan personally before he jumped to any conclusions. So we wait. Caren was researching what they'll do if it is an abcess, but had to stop when she read about drainage tubes in places not meant for drainage tubes.

He'll have the disc by noon tomorrow and we should know more by later in the day. When we know more, you'll now more. Sorry for the lengthy post, there was a lot to report and the kids are at my parents house tonight. When given a topic and the time, I write. I'll update everyone tomorrow.

Catching Up

It's been about a week since I posted anything. Not surprisingly, it was my first week back to work. I had actually forgotten just how busy real life is! Fortunately, Caren's mom was able to get some time of of work to spend the week wrangling the kids and keeping tabs on our patient.

The week brought minimal, but certainly not imperceptible, improvements for Caren. She spent more time up and around than she did lounging in bed, that's for sure. She's still a little slow on her feet; to get an idea of her gait, try to imagine someone doubled over with gas cramps trying to walk across a bed of hot coals. She's kinda crooked, but up on her toes, with a bit of a waddle. I only dare offer that image because I know, beyond a shadow of a doubt, that if she was to read it soon, I can out run her with one leg tied behind my back...and I have a very comfortable couch!

Her diet has continued to diversify. We haven't gotten too adventurous, but she did eat some salad yesterday. This was the first green, leafy meal in a decade. For the most part, we focus on simple, tasty meals that are easy to wrap up and re-heat. Her appetite ranges from a few bites of pasta to a whole cheeseburger and sweet potato fries (Ok, I realize there is nothing simple about that meal, but it was special request. Who am I to deny a woman a cheeseburger and fries?).

Her INR (clotting factor) has continued to be about as stable as Mel Gibson's long-term job prospects. We're working with the surgeon to find a dose of the Coumadin that gets her therapeutic without turning her blood into cool-aid. But, after our follow-up appointment with him yesterday, he seems to think she's well on her way to full recovery. His actual words were, "You look great!" Patience and perseverance will get us to that all important moment when we actually feel like it was all worth it.

I'll post some more on the follow up appointment next. I captured the highlights of the time with the surgeon in that single sentence above. Unfortunately, the trip was anything but uneventful.

Just curious...

I know we're out of the woods with Caren's recovery, so I'm curious how many folks are reading along. If you're still checking in, drop me a comment or an email (seth.r.goldstein@gmail.com). I'll probably keep writing to preserve my own sanity, but it's nice to now who the audience might be.

Ongoing Recovery

It's bee na few days since I had the chance to update everyone. Caren is getting a little stronger everyday. It's become clear that the recover is going to be measured in weeks and months, not days and hours. Every day that she can do something she couldn't do the day before is a good day. Some of the victories are as little as staying awake for more than an hour at a time or walking from the bedroom to the kitchen without a pit stop.

In the last 24 hours we've been able to add some protein to her diet, baked chicken last night, and she was able to get up and shower this morning without almost blacking out. Since we left the hospital, her blood pressure has been pretty low and every time she stands up, "the world starts to go black." I don't believe we've had any actual loss of consciousness, but we've come close a few times.

The chills and hot flashes seems to have abated also. She hasn't mentioned them in a couple days, so either they went away all together or they're at least to the point where they're not as bothersome. I really think the issue was her fluid level. I don't know if it was the blood loss post-surgery, the blood thinners, or something else entirely, but ever since we've been making a concerted effort to increase her fluid intake, the symptoms have started to get better. I have no idea how much water and juice she's drank in the last two days, but I'm willing to bet it would be measured in the gallons.

Her clotting factors are still not where they want them so we've been messing with her medication doses to try to get the right combination. We haven't been making it up as we go along, the surgeon calls us every Tuesday and Friday after he get s copies of her latest lab values and tells us how to tweak things. We'll see how it looks on Tuesday.

Our next visit with the surgeon is next Friday, the two week follow up. It'll be odd returning to the scene of the crime. I'm not sure how I'll feel walking around that neighborhood again. I started to feel like I was living there by the end of our stay. I doubt it'll feel like much of a homecoming though.

Everyone else up here is good. The boys are great, but oh so much work. Sadie, the puppy, continues to be the most work of them all though. She's a good girl, just such a puppy, and damn near 50 pounds now to boot! I nearly came unglued the other day when, after a morning that started at 5:05 AM and was ripe with screaming, crying, hitting, kicking and did I mention screaming? I was changing Sam's second, absolutely disgusting poopy diaper of the morning, when Sadie decided she was not getting enough of my attention and grabbed her rubber, chewy bone. First she tried to put it in Sam's mouth, which her was not happy about. Then she sat on his head and tried to put it my mouth (let me remind you that Sam is on his back with a load of crap nearly oozing out of his diaper on to the carpet). I pushed her away from Sam and told her to go lay down, a command she hasn't quite grasped yet, because she obviously confused my order to go elsewhere with the phrase "Drop that bone right in the pile of poo between Sam's legs." A common mistake.

So there I am, one hand holding Sam's ankles in the air, the other hand holding a poop-laden wipe, Sadie is sitting next to me full of pride, the bone in actually standing erect with one end buried in Mount Sampoopious, and now Sam is screaming because he has no idea what the hell is going on. I can look back on that moment now and smile, even chuckle a bit at myself. I assure you, there was no laughter in the room at the time. I started growling, actually growling. I don't even think I was capable of coherent speech. Fortunately, Sadie got the picture and disappeared. I have no clue where she went, but it was the smartest thing she's done in her short time on this planet. Sam just lied there and looked at me between his knees with this "please tell me this is almost over look". I left the bone in place and finished wiping the shiny, white butt hovering over it. The diaper, load of crap and bone all went by-by in one package. Sam got a fresh diaper and on we went.

That was the moment where I was able to say, "it can't get much worse." I think that those times are important. It was almost a turning point for the whole week. I f I was able to get through the kicking, screaming, tantrum-full, Mt. Sampoopious few hours, I can handle just about anything coming down the pipe. I'm not saying I handled it gracefully, I think my voice hurt from yelling so much, but we got through it; no one got hurt (well, at least no permanent injuries), no one seemed to hate me too much, and the house was still standing the next day, what more could we ask for?

Limited Tolerance meets The Zoo.

Caren has ventured past the bedroom door today. We've observed her wobbling to the kitchen and living room a few times today. It's so great to see her up and around, even a little bit. SHe tried to come out and visit with the boys for a few minutes this afternoon, but I seriously think it was sensory overload for her.

She wandered out and crashed on the couch. The twins pounced immediately. They just wanted to be close to her, but couldn't take a break from the wrestling match they'd been engaged in for the preceding 10 minutes. All in good fun, just rumbling and tumbling around the room. However, when Caren sat on the couch, they decided to take the action onto the couch right next to her! They were rolling back and forth, jumping off the arm on top of one another and just generally creating a huge ruckus way to close.

To complicate it slightly, Sadie, our 4 1/2 month old German Shepard puppy (I know, we should have our heads examined!), was desperately trying to get Caren's attention, by nuzzling her hand over, and over, and over, and over again. I swear, I looked over there and Caren's eyes were spinning. The noise level was just below "Jet Engine" and the whole couch was shimmying around. The visit lasted about 6 minutes, after which she retired to the calm and relative safety of the bedroom.

It was a noble adventure. She really needs to be getting up and moving around, even if it's just to come out to visit the Zoo for a few minutes and get back to base camp.

We may have a new record!

As if we didn't have enough to deal with, we managed to hit an all time high for Caren's INR, which is the blood test to see what her clotting factors are. A normal INR is between 1 and 2. They started her on anticoagulants last week in an attempt to decrease her ability to clot, thereby reducing the size of the clot in her liver. It may not actually make it smaller, but it sure shouldn't get any bigger. A therapeutic INR, meaning the anticoagulant drugs are doing what they want them to, is, I think, between 2 and 3 (I'll double check that and correct if necessary. I hate being the harbinger of bad information!).

Caren's INR is currently 4.2. That means she's somewhere between, "Way Too High" and "Leaking Cool-Aid from Every Orifice". So, we skip the Lovenox injections (BTW, injecting drugs into your wife's belly twice a day is NOT fun) and reduce the dose of oral Coumadin, and recheck on Friday. In the meantime, we keep Caren away from sharp objects. A paper cut could be a huge problem for us.

We still can't find a reasonable explanation for her hot & cold spells either. I thought it was related to the thin blood, but the surgeon said it wasn't. She goes from sweating bullets to freezing cold in the span of minutes. This would be annoying under normal circumstances, but when adding and removing clothing and blankets requires a half-time respite, it's damn near impossible. I'll walk in and find her half undressed, taking a breather, just un-fun (if that's even a word. The hyphen makes it look good though right?).

She's got a small appetite back. Her carrying capacity is about 5 tablespoons though. Half a turkey sandwich will fill her up for hours. But she is eating. I should research how long it takes malnourished people to return to normal energy levels. There's got to be a case study out there on a crash victim who was trapped for 10-days, or a lost hunter that didn't eat for two weeks. Actually, a lost hunter that didn't eat for 2 weeks has got to be the WORST hunter on the face of the Earth! Maybe a lost hiker. Anyway, there has to be a way to gauge if she's progressing normally, or stagnating terribly. I just hate seeing her so weak. The next few days will probably tell the story.

So weak.

Caren is so unbelievably weak. She's eating and drinking, but just can't seem to generate any energy. Brushing her teeth requires a two hour nap to recover. I'm really hoping that it's just the residual effects of not eating for 11-days. Eventually she has to catch back up, but by eating a few tablespoons at a time, it's going to take a while.

We'll nurse her back to health slowly, very slowly. Thank you for all the best wishes, every little bit helps! I'm on waffle duty. More to come later.

Monday Morning

It's Monday and we're finally home. Yesterday afternoon got a little hectic, I never got a chance to write. Although we did get out of there, finally, it wasn't without it's ups and downs. For some reason, the team of residents thought it was perfectly reasonable to see Caren to arrange her discharge AFTER they saw the roughly 50 other patients they had on two floors. If they had started their rounds at 6am this might (andI stress might) have been acceptable. Unfortunately for them, the scorn of being the last to be seen to have her NG tube removed was still fresh from Saturday and our patience had run out.

Caren had the nurse start paging the residents at 9am and asked her to page them 2-3 times an hour until they finally arrived at 11am. They obviously weren't very happy with her. We had given up on making friends and influencing people four days earlier, so no great loss. When they finally arrived, he two of them played a good cop-bad cop game with us. Little did they know, Caren had the bad cop-psycho-ninja, doctor killer roles all wrapped up into one. After some fairly tense moments, we got the discharge plan ironed out. Then the waiting started all over again.

The Team had to see the rest of the patients before they updated anyone's orders in the "system" or wrote discharge notes. It seemed ludicrous to me that the "system" would be so slow to evolve. What if there was a drastic change in a patient's treatment plan and they were the first patient to be seen? We've already established that the nurses will not deviate from the treatment plan in the "system". That patient could receive inappropriate treatment in the window of time that the Team is updating the "system". What complicates the "system" even more is the sheer number of doctors on the Team and the lack of communication therein. Caren's Lovenox (a blood thinner) therapy started a half day later than it should have because a Team-member didn't enter the order to start it. They didn't catch it until the next set of rounds later that day, then debated in the hallway outside the room who the guilty party was. In my mind, the simple solution is, enter the orders immediately after seeing the patient, then move on. Or, jump into the 21st Century, and use a bedside tablet or computer to enter the orders real-time, as you see the patient. I'm sure some hotshot accountant can find a decent return on investment for the initial cost of implementation. There has to be some way to calculate the value of increased efficiency in the "system".

Since I'm on the topic of efficiency, the fact that they wait so long to discharge patients (we finally got out around 2pm) creates huge logistical issues for the facility. I'm not sure how often the hospital runs at capacity, but I seriously doubt that Caren's bed was scheduled to sit empty for any length of time. If there are patients coming out of surgery or waiting to be admitted form the emergency Department, they wait and wait until the beds are empty upstairs. The sooner they can get the outgoing patients out, the smoother the "system" will run. There's really no reason why they couldn't see the patient's to be discharged first, maybe after any critical cases in ICU, and get them on their way. Just my thoughts. Sometime this week I plan on outlining my vision of the perfect hospital, what it NEEDS, what it should really have, and anything that should be ever-absent from inside it's walls.

This entire experience was extremely eye opening for both Caren and me. Some of our assumptions about a large, teaching hospital in NYC were completely absurd. We also came to see our local, community hospitals in a different light. Yes, they are smaller, and lack some fo the fancy specialties, but they are doing some things very good. The big guys could stand to learn something from the small-town approach.

Caren is resting uncomfortably right now. It was a long night. Getting the pain managed without our friendly neighborhood PCA pump is proving a little complicated. I'm sure we'll figure it out and she'll be sleeping most of the day. Off to eat something before the boys and I get to playing!

Home Bound!

We have been told that we are going home today. We're expected to breakout around noon, but it could happen at any time. There's always the chance that the doctors could change their minds and decide she needs to spend another day here. I don't think they realize that they should have a SWAT team on standby if they even attempt that. Caren would summon the energy to go psycho-ninja doctor-killer on them! I think we're leaving today with or without their consent. I just hope I'm not high-tailing it up 1st Avenue with NYPD ESU in tow.

She's spent the morning cleaning herself up, even the Dilaudid can't suppress the OCD. Of course, the simple act of washing her face makes her so tired she needs a nap before putting on deodorant. I think the sheer excitement of going home is driving her forward. Right now she needs a shower (those are her words, not my assessment of her level of cleanliness - I'm brave, but not that brave), some comfy clothes, a good meal and her own bed.

I actually spent the night recovering from something. I don't know if it was just my sinuses, or I ate something bad or my body just released all the pent up pressure when we learned that she was going home, or a combination of all of the above, but I got ill yesterday afternoon. Headache, vertigo, nausea and I even threw up once. Fortunately, it didn't persist, so I don't think I'm harboring any contagions. My head is still a bit sore, but it feels like sinuses. The air down here just doesn't move. When we got the bad storm on Friday night, it must have stirred up everything laying around and sent my sinuses bonkers. It also didn't help that the beautiful flowers I brought Caren earlier in the week were growing a lovely strain of mold hidden deep inside the bouquet - looked OK on the outside, my worst nightmare on the inside.

So far, so good today. Tensions are a little high, just because we are anxious to get out ASAP. I'll post again if I can, but more than likely, the next post will be from home!!!!!!!

Her roomate

Actually, I say it went smoothly, but I almost forgot that Caren's roommate was almost assassinated at 3am! I know I'm only a lowly paramedic, but even I see the potential danger in giving a 60 units of insulin to a woman who has been NPO (no food or drink) in preparation for a colonoscopy and has a blood sugar of 99. Within a matter of minutes, her mental status declined to moaning and groaning, her blood sugar plummeted to 24 and the nurses were running in and out of the room like their clothes were on fire. I was awake and kept to myself. I was about to jump through the curtain when I heard them trying to administer oral glucose gel to her. We have pretty strict rules against giving oral medications to unconscious people! The last thing this little lady needs is an aspiration pneumonia added to her laundry list of troubles! I heard her start to mumble to them and decided she was probably awake enough to handle the glucose gel. Fortunately there was a single nurse on the floor that had a clue and ran the show. The got her some IV dextrose and got her sugar up enough that she could talk. The first thing she said, in her thick asian accents was, "That was no good!" Apparently referring to the near death experience she endured at the hands of her nurse. All the nurse said was that she had given her the same dose of insulin the night prior when her blood sugar was 107 and she did fine. What the good nurse did not realize, although she definitely should have known, was that the patient had been on an IV drip that contained dextrose the night prior. It was artificially maintaining her blood sugar level and allowed her to tolerate the insulin. They discontinued that drip earlier that morning...oops.

Here's to tube-free living!

The last of the dreaded tubes was removed about 20 minutes ago. No more NG Tube baby! The relief was instantaneous. They want to her to start eating a clear liquid diet today, and barring any issues, WE GO HOME TOMORROW!

I can't even begin to explain the sensation when they said "...go home tomorrow." I thought Caren was going to pass out, it's unclear when it was due to not eating for 11-days or the sheer joy of knowing we would be getting out of here soon.

She'll start eating at lunch and we go from there. For the first time, I feel like there might be an end in sight. We still have a long way to go, but getting home is the first step on that next part of the journey.

Other than a week and a half of our lives, 6 feet of colon and a gall bladder, the only other thing we lost was about 15 pounds of Caren and counting! I keep telling her this is not supposed to be a perk of the procedure, but she insists it's a good thing.

I'll be in touch soon.

A visit from McGuyver!

I had to throw this in here. For the last week, Caren's suction canister has be dangling from the wall connection via a 18 inch section of suction tubing. I noticed it as odd, normally there's a thing on the wall that holds the canister, but really didn't think much of it.

This morning, after changing out the full canister, our nurse proceeded to tape a canister holder to the wall unit to hold the canister higher. Apparently she noticed the missing holder and it was bothering her! She said they recently renovated this room and re-arranged the components on the wall and either forgot to, or discounted the importance of including a mount for the canister holder.

The nurse kept saying if the tape bothers us, just say so and she'll remove it. I just laughed. At a hospital where they can remove a colon, transplant a heart, and reconstruct a damaged face, we have a suction canister attached to the wall with medical tape! I mean, if we're gonna use tape, couldn't it at least be Duct Tape?

For the record, the tape in no way impedes functionality. In fact, I think it's working better with the canister closer to the wall connection! Just a little unsightly.

The poop prayers have been answered!

Caren continued to do well over night. Some bouts of nausea that would pass after the NG tube was flushed, but nothing major. I was delighted to hear that she pooped this morning! I called her as I was getting ready to head out to catch the train and apparently she got up to pee after the head surgeon visited and she pooped too. She's slamming the call bel to see if the surgeon is still on the floor and he comes strolling in to find her on the commode with a huge smile. I'd call it a shit eating grin, but given the circumstances it would seem very inappropriate.

Now the conversation has turned to keeping the BMs coming and getting the NG tube out - hallelujah! They did come in and remove the JP drain. It was a drain that was inserted deep into her abdominal cavity to drain any blood from outside the surgical site. The amount of fluid it was draining steadily decreased over the last few days, so it was time to go. The NG tube will remain until they are comfortable that the bowel is going to work consistently. Best case is, she poops all day and they yank it out tonight. More than likely, if she has a few more regular bowel movements, they'll take the NG tube and connect it to a regular collection bag (like a foley bag) tomorrow morning. If that goes well, the tube will be removed tomorrow afternoon-ish and they'll start her on some food. Once the NG tube is out and she's eating and pooping without nausea and vomiting, we can start to think about getting out of here.

I have to say, I think the decorating the room a little bit has made a huge difference. Yesterday my sister brought over some pictures of the boys and her parents brought down a framed picture of the three of them. It was an hour later that she started to pick up energy. Modern medicine is so deeply rooted in science, and logic, and cause & effect, that it completely forsakes the psychological aspect of healing. We spent a week focusing on what's causing this or that and how do we resolve it, that we nearly forgot WHY we were doing this in the first place: a healthier body to provide more hours, days, years and decades with our kids and family. For now, we fight the good fight and actually dream of the day when the boys are jumping into bed with US at 6am! Yeah it early, but if the last week has taught me anything, it's don't take the little stuff for granted.

I'll post again this afternoon with the latest on our poop-saga. If she's up to it, Caren said she might want to post something herself.

Train Etiquette

After re-reading the last, very long and depressing post, I decided to inject some levity. Let's discuss train etiquette in the NYC subway system.

For all intents and purposes, I have been living in Queens and commuting to the Upper East Side of Manhattan for the last week. I take the train in with the morning crowd and commute home with the second shift folks. I have ridden the subway system on numerous occasions in the past, but never with this frequency. This week I got to see my first subway rat; a little guy who was scurrying away from a cleaning crew sweeping debris from around the tracks. i have also seen some of the most bizarre individuals to be found anywhere on this planet.

Last night, I saw a gang, I really don't know what else to call them, of clowns. They were all in their late teens and early twenties and all had paint on the heads and faces that made them look like clowns. Beyond their strange decorations, their behavior was just as outlandish. They were screeching and hooting like owls, bouncing off one another on the train platform and each was carrying a stuffed animal. The plush toys ranged from white & purple teddy bears to a stuffed beach ball at least 3 feet in diameter. We (the crowd immediately surrounding me) just stared at them as they came down the stairs and rumbled down the platform out of sight.

It was actually as I stepped onto the train I was waiting for that I experienced the greatest subway fop-ah imaginable. I stepped onto the train and locked eyes with a guy sitting a third of the way down the car. Normally on the train, you're not supposed to make eye contact with anyone (they teach you that early when you start to ride the rails). Unfortunately, he looked up as I looked in and we were stuck, we broke rule number one. What made this situation even worse was that this guy was HUGE. and not huge as in obese, huge like if he stood up, I think his head would have gone through the roof of the train and the veins on his biceps were bigger than my thighs. He was a big, cut white dude, with scraggly, long dirty blonde hair and an overall look of someone recently released (or escaped) from a Siberian work camp.

The crowd packed in behind me, forcing me forward, directly towards him. I ended up having to stand, hanging onto the bar directly over this guys head. If he stood up, he would have worn my right armpit for a hat! And there I stood, praying my over-active imagination was just that, and this man was not about to pick up the nice little spanish lady next to him to be used as a club. What happened next was just over the line.

The train started rolling from 59th and Lexington Ave towards Queensboro Plaza (on the N-Train), one of the longest single stretches without a stop on the whole trip. Moments after the train rolled forward, I saw a collective scowl rip across the faces of the people packed in in front of me. It was standing room only and one by one they all made a face of pure disgust. The tsunami of grimaces pushed towards me and I was finally engulfed in the cloud of stink: someone had farted.

I"m not talking about a little poot and a giggle. NOOOOO, someone in the front third of the car dropped ass! And it wasn't just any little fart smell either. This was gas emanating from someone that had subsided on nothing but Cheetos and beer for the last 72 hours. You could smell it, you could taste it and you could feel it on your skin. Good God, we were all going to die of asphyxiation.

What scared me more than the thought of dying on the train car, trapped in a noxious cloud of ass gas, was the sudden realization that the Siberian mauler sitting practically underneath me might think that I was the one that farted! That certainly would have led to my untimely demise as the Latina was swung like a war club in my general direction. I didn't even dare look down to see if he made the same face as the cloud wafted passed us. The stench must have dissipated beyond me because I really didn't notice many other contorted faces behind me. I was one of the lucky ones. Just one more adventure this week!

17 LONG hours!

Forgive me followers for it has been 17 hours since my last post. And a very long 17 hours it has been. Caren had a really rough night. Continuously uncomfortable and increasingly nauseas, despite the NG tube being there. She had the same nurse as the night before, but for some reason the whole floor was in grouchy-mode. I took off around 10pm, getting to Jenna's place in Queens at about 11pm. I had enough time to eat some pizza and have a beer (thank you Ryan for ALWAYS having a fridge full of cold beer!) when the phone rang.

I could barely understand her through the sobs, but Caren was not doing well. I was able to piece together that she had actually thrown up around the NG tube, which completely defeats the purpose of having the NG tube in there. It also sounded like the the staff was less than receptive to her pleads for help. Soooooo, back onto the N-Train I jumped. I am still amazed that, even after midnight, the trains were standing room only. I arrived back at the hospital at 1:15am and this is where I need to give my 2-cents on security guards.

I have been coming and going from this facility, multiple times a day, for a week now. In that week, I was asked where I was going maybe twice. As soon as I provided a clear answer and destination, the conversation ended. My recent dabbles with the Homeland Security community has taught me that a hospital is a juicy target for people wanting to do bad things. I actually applaud a little scrutiny at the front door. For the most part, however, I was never given a second glance as I marched in or out with my backpack full of computer stuff, entertainment gear, random body parts or plastic explosive, they would never know. That is until 1AM this morning.

At 1 friggin-o-clock in the morning, with "Please don't fuck with me" tattooed on my forehead, Sponge Bob Square Badge decides this is the perfect moment to lock the facility down and institute random body cavity searches on anyone wanting to enter the building. Now, if you're the ONLY dude walking into the hospital without a Mt. Sinai ID badge, you have a damn good chance of being "picked" for a random search. Ok, there was no actual body cavity search, nor did he insist on looking in my bag, but we did do our little version of the Spanish inquisition in the lobby. He went to far as to call the floor to confirm that the patient I stated I was arriving to visit actually existed. On one hand, I applaud him for challenging me and instilling some semblance of a security screening. On the other hand, I wanted very badly to stab him in the eye with the pin from his very large, square badge; it was late, I was grumpy. I swear I'm not a violent person in any way, shape or form.

I got up stairs in time to see the staff scurrying from the room like roaches when the lights go on. I think one of them actually breathed a sigh of releif when I came around the corner. We settled back in, hung the IV Benadryl (All hail the inventor of Diphenhydramine!) and got some fitful sleep, Caren tossing and turning in the bed and me in my chair (see picture above).

I was awakened about 90 minutes later to the sound of retching. By now, I think I'm actually over my issues with vomit. There's something about living on a floor devoted to GI patients for a week that just changes a man. Caren was throwing up around the NG tube AGAIN. The nurse came in and tried to comfort her, which, had she not been puking her guts out, would have been a death sentence. In between heaves, Caren was able to conjure a look so nasty I think small children would go blind if they saw it. Our nurse got the message and backed off. We convinced her to irrigate the NG tube so it would flow better and got some Zofran (anti-nausea med). We made it through the rest of the night fairly smoothly.

The morning meetings with the Residents and Surgeon brought more troubling news. The blood clot they discovered during her CAT Scan may be more insidious than they initially let on. The Surgeon explained that the clot is resting in the hepatic portal vein which is the primary drain for the small intestine. If that vein is even partially blocked, it will cause intestinal swelling/distention which leads to: nausea, vomiting, fever, abdominal pressure/discomfort, and decreased intestinal function (sound familiar to anyone?) It's not clear if this is the root cause of ALL of her symptoms, but the Doc seems to think it's a major player. SO they started her on Lovenox, a blood thinner, to reduce the size of the clot. Hopefully, the blood flow will be restored and we get back on the road to recovery. One big downside is that once they start thinning her blood, she's gonna be on thinners for 6 months after she leaves the hospital, which in and of itself, is not that big a deal. The kicker is that, when you're on blood thinners, they need to check your clotting times twice a week at first, weekly later on and at least twice a month towards the end of the cycle. So much for going home and leaving this arduous ordeal behind us!

She is resting as comfortably as can be expected right now. The foley catheter has been removed, which must feel great! Our energy took a hit when the doctors said she wasn't going home until Sunday at the earliest and more than likely wouldn't get out of the hospital until some time next week. But we're hanging in there.

Can I get a Hoo Haa for no leaks?

The CAT Scan results came back with mixed results. The best news is that there is no sign of a rip, tear or leak in the new GI tract. The small intestine and pouch are intact. The problem is that it just isn't working in that it still appears paralyzed. The best explanations for that is either it hasn't recovered enough from the surgery or the pain killers are sedating it too much or some combination of both.

The decision is to leave the NG tube in place for a couple of days and see if it wakes up on it's own. As far as I can tell there is no insertable alarm clock available to shake it awake in the event it decides to continue to over sleep. Knowing Caren's complete hatred of waking up in the morning, it comes as little surprise that her intestine has been hitting the snooze button for almost a week now.

The CAT Scan did not happen without it's own hitches though. There was some issue getting the dye to move into the pouch (really concerning at first), so they decided they needed to inject some dye from the other direction - sounds pleasant right? Well, imagine if you would, having the Residents inject the dye up that route, having the scan and being told it didn't get high enough and having the distinct pleasure of having it done a second time. Yea, stick a needle in my eye instead please! And make it a big one. Fortunately, the second time was the charm and the pictures were clear. I think a third round may have resulted in some casualties downstairs. I had stayed in room and there would have been nothing to stop Caren from tearing some poor, 20-year-old Resident's arms off and beating him to death with them.

An interesting additional finding on the CAT Scan was a clot in a vein in her liver. Seriously now, can we stack anything else up here? Can the hospital be overrun by terrorists or maybe a repeat blackout down the East Coast? I guess it's a VERY small clot and is not uncommon in cases of advanced ulcerative colitis. The team of doctors is going to check with a vascular specialist for treatment advice, but it sounds like some anti-coagulant drugs are in our future. Maybe just in the hospital or possibly a regimen to go home with. We'll exchange daily prednisone for daily coumadin, sign us up! (For anyone confused, that is PURE sarcasm there. I know it's lazy writing, but I'm tired).

For that matter, I think Caren is getting tired too. It's been a long haul and there's no immediate end in sight. I can tell that her spirits are a little low. She's missing the kids and the house and a shower and her own bed. Maintaining the resolve required to keep fighting takes enormous energy and she hasn't eaten anything more solid than jello in a full 7 days now. If I go more than 7 hours without a meal, not a snack, a meal, I get cranky. She's holding it together as well as she can, but patience are thin and tolerance is a hot commodity.

Blog Updates

While Caren has been downstairs getting her CT Scan (90 minutes now), I've been updating the blog some. I added a picture of what they create during the surgery. I also put a few links to interesting stuff on the left. There's a link to our surgeon's profile at the hospital, a link to a J-Pouch support group (good info in there), and a you tube video of a soldier taking an NG tube (just so you can get the idea of what she went through.

But we don't have any Cats!

Finally, at 2:15pm, Caren was picked up to go for her CAT Scan. It only took two Residents to figure out how to inject the contrast medium into her NG tube and a third Resident to start screaming on the phone at someone at Patient Transportation to get the show on the road. In defense of the Residents attempting to inject the dye, they actually knew how to perform the procedure, actually Jack could squirt fluid in a straw, but we learned why the Head of Colo-Rectal Surgery doesn't do the simple NG tube insertions anymore. He grabbed an old-school NG tube and threw it in there (not literally of course), the Residents are used to using a different, newer tube that actually has a port on the end designed to inject stuff into. The problem they were having was figuring out how to attach syringe "A" to port-less NG-tube "B". The bewilderment on their faces is actually amusing in retrospect, trying to decide of the parts were compatible or not.

Eventually they got the right syringe, the one designed for NG-tube "B", and got the stuff in. Then the waiting began. I'd say, roughly two hours passed before the screaming on the phone occurred. There was someone waiting outside our door in fifteen minutes after that.

The rest of the day has been spent trying to manage her infection and get her fluid and electrolyte levels back into sync. She's been relatively comfortable, except for the last hour or so sitting with a belly full of contrast medium. No new fever and no more vomiting episodes (thank goodness!). Once we get the results of the CAT scan we'll be able to come up with a plan for the next few days. I really can't thank Fran & Al, Suzie & Eric, and especially my parents for putting damn near everything on hold to take care of the boys and the dogs (I feel obligated to mention the dogs here because Sadie, the puppy, is probably the most work of all of them!). Caren and I have been able to focus on the task at hand without worrying about how our guys are doing up there. I also know that there's a limit to how much we can reasonably expect; my only hope is that Caren gets well enough so we can come home together, very soon. Don't worry guys, I won't leave ya'all in charge of the zoo up there for ever! We'll know more this afternoon and go from there.

Thank you again for all the support. Caren reads my posts and your comments whenever she feels up to it, so keep them coming. So far I haven't written anything that got her too upset with me, although the bit about almost throwing up on her made her laugh so hard her incision hurt, and that got me a dirty look. We can't wait to see everyone soon.

Joke's over folks

I definitely lost my sense of humor for a while last night. Caren deteriorated over the course of the day. She just felt sicker and sicker. Around 7pm, we were just watching some Jeopardy and she started shivering uncontrollably. Out of no where she developed nearly 102 F fever and almost completely stopped producing urine. Earlier I had poked fun at our lack of attention to her foley catheter; the truth is that she had a serious problem brewing there and for some reason, no one was paying close attention.

I need to explain a little bit about how hospital care works here. In the real world, when someone realizes they have a fever, they take some Tylenol to try to control it. If it appears as though urine production has slowed, you notice that your pee is getting darker and darker, you hydrate and try to get back to balance. In the hospital, no one does anything without permission. The nurse, who literally looked like she was in her 70's, and turned out to be very sharp, could not give Caren ANYTHING without asking the doctor. Well at a teaching hospital, there are all sorts of doctors. Some doctors that know things, some doctors that don't know anything and the worst kind of doctors that don't even know that they don't know anything. Well when the nurse asked the Resident on the floor, he didn't know what to do (although he was at least self-aware enough to know that he didn't know what to do). He contacted his Chief Resident who wasn't sure how the Attending (Caren's surgeon and head of Colo-Rectal surgery at the facility) would like to proceed, so she contacted the person covering for the Attending (it was after 8pm at this point). Around 9pm, a man in a white lab coat strolled in and started asking about Caren's vomiting episode. In retrospect, it wasn't his fault he was woefully uninformed about the case, but he certainly didn't get a warm reception. I gave him a cross look and said that the vomiting happened over 6 hours ago and could we please discuss something more recent. Caren just looked at him and said, "Who ARE you?"

With that he started shuffling through his paperwork, obviously frustrated, he said his name was "Victor" from the surgical team and then stormed out of the room. From the bedside, I could hear him screaming at the nurse, who wasn't even the one that called him, about missing information and he couldn't do anything unless he knew what the problem was and "This is a waste of my time." Caren actually needed some help right then or I would have taken a moment to explain to him that the needs of my wife, or any patient for that matter, should never be considered a waste of his time. We never found the opportunity to have that conversation.

He ordered a chest x-ray, so we took a trip downstairs. I ended up staggering out of the hospital around 12:15am to get back to my sister's to get some sleep. I had a feeling today would be another long day. On the overnight, the chest x-ray came back showing some decreased lung capacity (not uncommon for a person who has been bed ridden for a week), but no pneumonia, which was the purpose of the test. Meanwhile, her blood work came back showing signs of a massive infection somewhere in her system. Caren took this moment to remind Victor that she only has one kidney, a congenital anomaly, just lucky I guess. He ran out of the room yelling, "She only has one kidney?" Now they finally took a close look at her urine, which by now was the color of Lipton Iced Tea and had chunks of tissue floating in it. Sorry for everyone with weak stomachs out there. I just can't express my frustration with the fact that we have a patient with an obvious infection and urine that looks like that and we're still looking for a respiratory infection despite a complete lack of respiratory symptoms. I understand the desire to be thorough, but when you're looking for a needle in a haystack, why would you start the search in the barn?

In any case, this brings me to this morning. I walked in the door around 9am to find Caren unleashing the fury into the all-to-familiar basin with her surgeon at the bedside. I swear, that guy makes her puke! She vomited not 5 minutes after he left yesterday and purged as soon as he walked in the room today. She apparently had been increasingly nauseas all morning. The doctor waited until she had finished and promptly inserted an NG tube to relieve the pressure. The procedure is awful and the feeling of the tube sitting in the back of her throat is nearly unbearable. As soon as the tube hit bottom though, two quarts of nastiness filled the suction basin. There was just a ton of goop sitting there, unable to down and just waiting it's turn to reach for the sunlight through her mouth.

The surgeon is not convinced there is a blockage. He thinks the bowel isn't mobilizing well yet. However, in the constant grasps at being thorough, Caren is currently having Cat Scan contrast dye injected into her NG tube. We should be headed down for the CT scan shortly, the results of which should definitively show if the new GI tract is working or not. We'll know more this afternoon. I will post as soon as I have something to update ya'all with.

Reverse Peristalsis

My how things have changed! What was initially just persistent nausea erupted into a geyser of...of...let's just say the entire contents of the small intestine. It was the most extreme example of reverse peristalsis; I think it started at her toes and just kept coming.

The good news was that, with the contents of her newly formed GI tract, the episode also brought instant relief from the nausea. She's actually been nausea free since the whole, awful ordeal. The doctors have been largely un-phased (I'll discuss my reaction shortly), one even commented that she finally cured her nausea. There was some discussion of NG tubes (nasogastric tubes) to relieve any pressure in her stomach and possibly doing a cat scan to make sure there aren't any blockages down there somewhere. They're hard pressed to go for aggressive treatments and tests when she honestly looks better than she's looked in days. Caution is the order right now: back to clear liquids, very sparingly, and keep walking and moving around. One of the surgeons remarked that sometimes it just takes a little longer for the entire intestine to "wake up". Best guess right now is that there was one or more sections down there that were reluctant to return to work and caused a brief stoppage. If there is no more nausea/vomiting and she continues to tolerate fluids, they're gonna leave her alone.

The foley catheter is tentatively scheduled to be removed tomorrow morning, hopefully with the abdominal drain. If she looks good, they may discontinue the PCA pump (her self-controlled, push-button drug dealer) also.

Now for my two-cents on this day's events. I am not a puke person. Some may be wondering: "Who the hell is a puke person?" In the medical field, there are just some things that you have to deal with. When your job is answering the call of the sick and injured, vomit, feces, urine, blood and any other bodily fluid you can imagine are sometimes encountered. Early on I realized that, you can bleed all over the place, piss in my ambulance or crap on my stretcher and, for the most part, I'll be fine. Unfortunately for me, one of the dozens of traits I inherited from my mother is that I'm what she affectionately refers to as a "Social Puker". Simply put, if you puke, I'm puking too; a relationship forged in emesis.

Caren has been nauseas for two full days, but hasn't vomited. The retching killed my appetite a few times, but I knew I had to "cowboy up" and help her out. So this afternoon, as I'm hanging up the phone after checking in on the kids with Eric, she starts reaching for the basis, and I really had no concern that this would be anything more than another false alarm. Oh dear, I could not have been more wrong. It took every ounce of will power in my body to fight the urge to ask her to share that damn basis and start puking right along side her. I got caught so unprepared, I damn near threw up right down her neck and back as she leaned forward and purged the demons from her soul. But no, I held it together! I'm balancing the bucket in my right hand and fishing around in my backpack for a pack of mint gum I forgot I had finished yesterday.

And she just kept puking! Oh my goodness, where the hell did it all come from? I had to run out in the middle of the whole thing to see if i could get another basis. No really, I was concerned that she was going to overflow the one we had, and I'm not referring to the little kidney bean thing that holds a thimble of fluid. We were rapidly approaching the carrying capacity of the big mama-jama basis that small children can bathe in. I'm in the hallway yelling at the nurse, who, by the way was holding her anti-nausea medicine in her hand (too little, too late), and I can still hear her doing her best fire hose impression. I came hustling back in to the room to see her look up from the bucket and announce plainly: "I puked." I spared her any the snide responses that went rushing through my head and simply replied: "I noticed."

I have no clue how much that basin holds: a gallon, maybe two? But I know when the fury of the Gods was done erupting from my poor wife's gullet, the darn thing was more than half full and I was struggling not to top it off for her. Her stomach settled almost immediately, I stopped churning about an hour later. And now we wait. Wait to see if the nausea returns, possibly indicating an intestinal blockage. If she gets nauseas again and certainly if she vomits again, in the words of Dr. Kim (one of the surgeons on her case), "She will earn an NG tube." Until then, clear liquids and patience. I can only hope that the next 24 hours are not as interesting as the last 6!

Tuesday Morning

It's been a better day today. The only persistent issue is the nausea. The pain and pressure is fairly transient at this point, but the reflux and nausea just won't go away. We went for a walk and she tried something identified as a hash brown but looked more like something else known for it's brown hue. They want her to start soft foods today, but without an appetite for anything, their going to have to come up with something more appealing if they actually want her to eat.

We're waiting for the doctor to visit today to see if we may still be leaving tomorrow. I think we're both ready to get out of here. The expectation is that the foley catheter and second abdominal drain will be removed today. They've already started transitioning her to medications by mouth. If they are able to remove all the tubes and she eats something with out imploding or exploding, we have a good chance of escaping. We'll see...

Mt. Sinai

I think I need to take a moment and describe what I believe to be some of the best hospital care available. Caren and I have been so impressed by the way things are done down here. From the moment we walked in on Thursday, we were aware that there was a "system" in place. They have their way of doing things and you can tell it's based on best practice assessments, not anecdote and conjecture.

The clinical care has been fantastic. Please don't misconstrue my earlier musing about the Residents as criticism, they are actually doing a fine job and if they had all the answers, they wouldn't need to be at this institution of higher learning. They are definitely fun to watch though! It's amazing how much stereotypical behavior captured by the latest TV dramas (and comedies) is accurate.

With the exception of some occasional linens and whatnot, we really haven't experienced long waits for anything we really needed. The staff has been attentive, caring and for the most part, really good at what they do.

I know none of them will ever read this, but they have my thanks for everything they've done so far. I can only hope that I feel the same way exiting the hospital as I have the entire stay.

Fever

The fever broke on its own about an hour ago. Caren burst into a sweat and he temp dropped back to normal. Still no confirmation on the source of the infection, but my money's still on the UTI. She's continued to have increasing action of the new GI tract; it's still just cleaning things out. Kind of like when you get a new office or place to live and you have to rearrange the furniture a bunch of times to get it feeling just right. Everyone's told us that once it starts working, it's going to WORK for a while until it gets settled in.

We're not sure the likelihood of her going home tomorrow any more, but I have every crossable appendage crossed. Not that I don't like being down here, but I'm ready to get home and get on with the next steps.

Here's your lunch time update

Nothing new on the fever, but the GI tract is waking up! Our nurse says that everything looks very normal. Caren is feeling a little better since she was able to move some stuff down there. This might relieve some of the pressure and distention. More to come.

MD/sq ft ratio

I'm wondering what the doctor per square foot ratio is for this facility. There are literally doctors, residents and soon-to-be doctors EVERYWHERE! You can tell the residents because they roam the halls in small packs. They are aware of the dangers of moving across the landscape alone, for fear that a predatory Attending or Chief Resident might corner and disembowel.

They scramble to and fro, whispering to one another, discussing lab values and differential diagnoses, looking to see what their cohorts know and don't know. There appears to be a leadership structure, at least in the packs that I have been able to observe closely. It seems as though one Resident asserts their dominance and leads the conversation. From my most recent observations however, it does not evident whether or not this leadership position is bestowed or assumed based on any measure of competence.

In the small pack I watched this morning, the lead Resident was the oldest, tallest male. It was readily apparent though that the youngest, shortest female actually had all the answers. The entire group looked to her for information regarding the patient, the patient's ailments and the best course of action, then turned to alpha male to repeat her suggestion and issue a treatment plan...which he issued in the form of a question directed at alpha female..."Right?"

Sometimes a pack of residents is found trailing behind a Chief Resident or Attending. They can be seen a few steps behind and madly shuffling through papers, reference books and patient summaries, terrified to be caught without an answer. Each attending appears to have their own "style" of interacting with their subordinates. You can tell those that walk quickly and carry a big stick from those that exhibit more of a maternal/paternal method. The hierarchy is always there, but the residents attached to those subscribing to the parental style seem less...scared.

Fever!

We had been doing so well it was simply a matter of time before Mr. Murphy decided to stop in for a visit. Early this morning Caren developed some pressure, pain and spiked a low grade fever. She saw the gaggle of Residents before I got here who clearly had no clue what to do. Fortunately her nurse is level-headed, experienced and decisive. Her nurse held the fort down until the surgeon got here around 10am.

They're not entirely certain where the infection is. The initial order (from the Residents) was to do a chest x-ray, probably because pneumonia is the most common post-surgical infection and complication. Thankfully, the surgeon performed an actual ASSESSMENT, and found zero clinical signs of pneumonia: she has no respiratory distress, no breathing abnormalities, no productive cough, no adventitious lung sounds (that's a fancy way of saying her lungs sound fine), etc. Caren and I were actually discussing the likelihood that her foley issues from yesterday could have led to a bladder infection or UTI. If that's the case, I'll be taking the express train to hell for making fun of it! I think the downtown 4 train is express during the week.

Still no movements down below. The surgeon noted some abdominal distention that caught his attention. They're going to watch her closely during the day and see what develops. He said the fever (100.2 F) is really borderline right now. They want to her to continue hydrating, walking and trying to goto the bathroom. We're waiting on a urinalysis and some blood work to come back to see if they can narrow down the source of the infection. She's sleeping fairly soundly now. I'll update everyone this aftenoon what we know more.

Occam's Razor and Foley's catheter walk into a hospital...

I had posted earlier about some increased abdominal discomfort Caren had been experiencing this afternoon. There's no way to tell for sure that this was the issue, but we suddenly came to the realization that her foley bag, the collection point for her urinary catheter, hadn't been emptied all day. They drained a full liter out of the bag, immediately releasing another 100 mL or so from her bladder.

It is a perfect example of Occam's Razor, a philosophical principle devised by the Franciscan friar William of Ockham in the 14th century, that loosely translates to: the simplest solution is often the correct one. We discussed the possibility of the irrigation drain being stuck to the side wall of the abdomen, pouch distention, the reawakening of her GI tract, all the while ignoring the fact that urine was slowly backing up the collection bag and filling her bladder: she had to pee REALLY bad!

A doctor, two nurses (Caren included), and a paramedic all searching for the worst case scenario and all it took was a patient care tech with a smile and a urinal to relieve the pressure and send us on our merry way. She's had some spasming since he emptied the bag, but that'll happen to the best of us if you've essentially been "holding it" for 7 hours! Hopefully once her bladder stops holding a grudge we'll be back to normal and the pain/pressure will subside.

Day 3 Developments

We lost the irrigation lines today. They had been circulating saline through her abdomen to keep everything moist and happy. It seemed to work well but made a sound like a perpetual bong hit, not that I would know anything about such things. Maybe an analogy to a constantly running coffee percolator would be more appropriate? In any case, that's done. There's been a bit more pain today, especially since the irrigation drain was removed. Nothing outrageous, but more discomfort than there had been.

We've had a couple of attempts to use the new plumbing, but came up firing blanks (she's gonna hate me for that one!). The good news is the sensation is returning. Soon enough it'll all be reanimated. Her diet will switch to soft foods tomorrow morning and we'll really give it a test.

Spirits remain high and it still looks like we should be headed home on Tuesday.

The latest

We met with both surgeons today. Although they had slightly different opinions on the proper method to ensure adequate functioning of the lower GI tract (I really need to spare ya'all the details...trust me!),they concurred that Caren looks good and is healing nicely. Her progress has been nothing short of miraculous.

We have walked twice today, she actually ate jello (something incomprehensible in a pre-surgery world) and stayed awake for more than an hour. She is admittedly "stoned out of her mind" on pain killers, but she's functioning. She even commented that, a week ago, even eating a bowl of jello would have sent her racing to the bathroom. So far, so good.

They will be evaluating the drains currently in place in her abdomen tomorrow; hopefully they'll remove them which will both increase her mobility and give her organs a chance to "reanimate" somewhat. She says it feels like everything inside is "sleeping". They've had a continuous lavage of saline running through her abdominal cavity since the surgery that has everything chilled out. With some food going in (is jello considered food?) and the drains removed, maybe we'll get to the momentous first test of the new plumbing tomorrow or Monday. My guess is that the surgeons aren't going to let her go until they know the lines are clear and the drains are running smooth, to keep with the plumbing metaphor (this offers me the opportunity to report without using descriptive medical terms for the distal portions of Caren's digestive tract, if you know what I mean).

Our patient is sleeping soundly now. It's a Dilaudid and Benadryl induced coma, but it's sleep. She'll wake up to fresh flowers and a dinner tray with more jello. We did orange jello twice already and scored some yellow jello (that is so cool to say out loud: yellow jello, yellow jello, yellow jello), maybe tonight she'll hit the motherload and get some red, or maybe even something exotic like blue jello. When your world is reduced to a ten square foot, curtain-clad hospital room, it's the little things that make all the difference.

Caren is reading the blog now that she's more awake. Please send your comments and well-wishes, it'll give her something else to smile about besides my potty jokes regarding her newly renovated GI tract.

Skype Rocks!

So in a marvel of modern technology, we were just able to video chat with Suzie, Eric and the twins via Skype. It boggles me that my kids are growing up in a world where video calling has always existed, the internet has always been wireless and information has never been stored on a floppy disc.

The really tough concept to get my head wrapped around is where technology will be when the twins are 35 years old. I'll be able to look back and say, "When I was your age we didn't have cell phones and ipods. Computers were huge and slow and the internet only came in through the phone line."

My kids may never read a newspaper that's made of paper or a book that's bound. They will never purchase a physical copy of any kind of media, music and movies included. By the time they get their first cell phone (I can only imagine how young they'll be) it'll be faster, smarter and have more on-board memory than the laptop I'm typing on right now. How's that for a reality check?

Today's a new day...

It's now day 3 and I think she's almost back to normal! What is my sign that we are well on the mending way? She checked her Facebook before I got here at 9am! If she can catch up on her Facebook on day 3, she should be ready to chase the boys by the end of the week...alright, I'll give her until next week.

I'm getting the hang of the subway system now. The thing that amazes me is that all those people are able to jam onto a tiny train car and not make eye contact with anyone else on the train! They live in one of the most populous cities in the world, but isolate themselves from everyone around them...odd. Anyway, I'm almost able to ride the train without people watching; it's so damn hard though. There are some freaky-deaky people down this way. Mostly everyday folks just doing their thing, but this morning (at 8:30am) I saw a lady that looked like a 5' 3", 300 lb. version of the Bride of Frankenstein! The craziest part was that you could tell from her body language that she thought she looked GOOD! Strutting down the platform, damn near knocked a little, Asian man onto the tracks with a hip-check.

Hopefully we'll get some walking in today! More to come...

Day 2

Well, we made it through the night. They gave me the boot around 9pm. The night nurse was attentive, but had the bedside manner of a Paris Island Drill Sergeant. Today the order of business is getting the pain under control and getting Caren up and moving around. We're waiting for the drugs to kick in so we can go for a stroll.

I'm very happy to say, that despite the pain,and massive doses of pain drugs, she is completely coherent today. Last night was interesting; I realized early today that she had absolutely zero recollection of the conversations we had last night before I left...although it's arguable that that is no different from any other night. At least this time she had the lame excuse of nearly lethal doses (Note: this is a slight exaggeration, I don't think any attempt was made to kill my wife) of narcotic pain killers!

I safely navigated the NYC subway system to get here this morning. I did manage to get a parking ticket in Queens...how was I supposed to know they actually clean the streets every morning in Queens? They sure as hell don't look that clean!

I'll update after we take our walk.

One more added benefit...

In my wife's ongoing attempts to rationalize the surgery, she eventually came to the realization that she would be losing 15-20 pounds in a week. I argued that the purpose of the surgery was not to start a new weight loss revolution, but if it helped ease her fears, far be it from me to be johnny-buzz-kill. To that end, the news that the surgeon also removed the gallbladder should bring the added comfort that she lost, from what I can gather, 500 extra grams of body weight! The hits just keep on coming!

Who needs a gallbladder anyway?

So, she's out of surgery and all went well. (Thank goodness!) He was able to complete the connections in one stage and avoid installing (I know that's not the right term, but it fits) an ileostomy bag...she'll be thrilled! The surgeon said that, in the process of removing her colon, he didn't like the looks of her gallbladder and yanked it out.

I don't know what Caren will be more excited about, the fact that she doesn't have a bag or the fact that she got the deal of the century on her surgery: she had her colon, her appendix and her gallbladder removed all for one low price! A Goldstein, at a Jewish hospital, getting a unannounced bargain...oy vey!

Waiting Sucks!

I know they call them "Waiting Rooms" because that's what we do there, but they should really just call them "Hell on Earth." Especially the room full of families waiting for news about their loved-ones surgeries. It's a bizarre amalgamation of representatives from every aspect of society, wringing our hands, rubbing our aching backs and praying our "beeper" beeps soon with news.

When I say "beeper", I mean they give you the same thing you get at a restaurant to inform you your table's ready. It buzzes, you report to the hostess, and they introduce you to your surgeon who hopefully utters the phrase "Everything went well," and does not slip an earth-shattering "but..." in under his breath.

We're just about 5 hours since she wandered into the elevator. Hopefully our table will be ready soon...

What the heck is a J-Pouch?

For anyone out there wondering what a "J-Pouch" is, here's the short version:

First of all, the surgery is performed on someone that has a bum colon (i.e.: Ulcerative Colitis). The only cure is to remove the offending organ, however, for all the biologically-impaired folks out there, the colon actually does some important stuff.

The primary function is fluid absorption. It also absorbs nutrients not picked up by the small intestine. Then the colon turns the left-overs into what we hope to be a nice, neat package for deposit in a receptacle of your choice: toilet, pot-o-john, bed pan, hole-in-the-ground, NY Mets hat, etc. In J-Pouch surgery, the surgeon removes the colon, all of the colon, and shapes the distal end of the small intestine into a pouch (shaped like a "J", brilliant right?) to function as a collection area. As the food-stuff gets to the pouch, it sits around for a while so fluid and nutrient absorption can occur. The tail end of the pouch is attached directly to the rectum to facilitate the aforementioned "package" deposits. Everyone's gotta poop!

The amazing thing is that after healing is complete, the pouch will essentially assume the entire function of the removed colon. All hail the human body! We're keeping our fingers crossed for a one-stage surgery. One-stage means they are able to make all the required connections in one surgery: small intestine connects to pouch, which connects to rectum, which connects to the outside world. If the surgeon isn't comfortable with the quality of the connections, meaning they're not quite air and fluid tight, he'll opt for the two-stage surgery. In two-stage surgery, they install a temporary ileostomy bag to bypass the pouch until it has a chance to heal properly. Figure 2-3 months with the bag, then a second surgery, hence two-stage, to remove the ileostomy and connect the plumbing permanently.

That's how it goes. She's been in surgery for a couple hours now, 2 or 3 hours to go!

Al

The excitement in the waiting room was just too much for Al!

Lo-Jack!

So, Caren and I were a little shocked to find out that there's no hiding at Mt. Sinai Medical Center. As soon as they check you in, they strap a Lo-Jack module to your wrist band so they can track you anywhere in the facility! So much for sneaking out!

J-Pouch

The time has finally come for my wife to have her colon removed. We're at Mt. Sinai Medical Center and she's in surgery. I find myself more anxious than I expected to be about the surgery. It's major abdominal surgery after all!

I intend to post about the process, it's ups and downs, as often as I can to keep a running log of how it went and how we handled it.
Seth