WARNING: Do Not Read While Eating Lunch

Or breakfast. Or dinner, for that matter.

So! I took Bob to see the gastro doctor on Thursday to have his exploded peg tube replaced. Before we left, I looked up "peg tube replacement" on the internet so I would know what to expect. I found out there are two ways to do this, one involves outpatient surgery and the other is a "simple procedure" that can be performed in the doctor's office where the doctor "gently tugs the existing peg tube, pulls it out, then replaces it with a new one". According to the website, this procedure should only take about 10 minutes, so of course I'm hoping the doctor will do this latter one.

I had never met this gastro doctor before, even though he was the one who originally inserted Bob's peg tube while Bob was hospitalized. The procedure was done late at night, under "emergency circumstances," right before Bob was transferred by ambulance to the pulmonary hospital. So I was a bit anxious about the whole thing.

Anyway, we are finally in the office waiting for the mystery doctor. The doctor arrives and he is young, I mean, really young. I could be his mother, that's how young he looks. And he is tall and thin as a rail and dark skinned and he has a very thick foreign accent---French? Maybe. He takes one look at Bob's peg tube and declares "It must be removed!" and then he goes on to explain to me exactly what I had read on the internet and asks if I want to do it there in the office or in surgery?

Of course, I opt for the "simple office procedure" and off he goes to get supplies. He comes back with two assistants, so now the little exam room is crammed full of people. He drapes Bob, still in the wheelchair, with several paper surgical drapes. He puts on a clear plastic face shield that covers his whole face, sort of like a welder's mask, dons some plastic gloves and he leans over Bob, puts his left hand on Bob's stomach and with his right hand he yanks out that tube. And I mean, he YANKS the sucker out.  So much for the "gentle tug" that I read about. And blood squirts out like a geyser, flying all of the place. And the doctor cries out, "HA HA! Don't worry! That is to be expected! HA HA!" while sopping up the blood with gauze pads.

By now, I am turning a bit green. The doctor swivels around on his little wheeled stool and holds up the old peg tube for me to see. He holds it like one would hold a dead snake, a long brown skinny dead snake dripping with blood and he laughs, "HA! HA! We won't be needing this anymore! HA HA!" and he drops the tube into a clear zip lock bag, where it coils into a rather slimy mess, and slips it into the garbage can.

Then he inserts the new tube. This went pretty quick. Basically, it's a straight tube with a deflated balloon device at the end, and once inserted he pumps the balloon up with a little pump syringe. All the while, the guy is still laughing and I'm thinking, man, this doctor enjoys his job. After he was done, he whips away the surgical drapes and pronounces himself pleased that he didn't get any blood on Bob's clothes. Then he tells me I have to take Bob across the street, to The Hospital, for an x-ray to make sure the tube is properly placed.

I'm thinking, no, oh no, because I don't want to go over to The Hospital. Because that is The Hospital were Bob had the stroke. That's The Hospital where I spent the worst couple of months of my life and I haven't been over there since Bob was discharged. Just the sight of The Hospital across the street had made me ill when we arrived and now we have to go over there, I mean, actually go into that building?

But we have to. So we go. I take a deep breath and tell myself I'll be okay, it's only the radiology department that we are headed to not ICU or surgery or any of those other awful places. But the minute I wheel Bob through the door, the minute I see those familiar halls, that green tiled floor, those beige walls, I begin to feel whoozy. As if the floors are tilting and the walls are pressing in on me. The radiology department is way over on the end of the building, we have to go through the whole floor, past the smiling framed Board of Directors portraits and the elevator which I took daily to ICU, the one with the red button that read "PRESS HERE TO CALL FOR HELP" which I stared at every day, as the elevator slowly rose, thinking "help! help!" Past the surgery waiting room, where I spent countless stressful hours. Past that one corner, where that one doctor had stopped me, right in the hallway and told me that he was so very sorry that Bob was "not going to make it". Then past the cafeteria, where I ate countless meals, whose smell now just about gags me. Finally, we are at radiology. And I am sick to my stomach and a nervous wreck.

For the x-ray, they have to put some kind of radioactive dye into Bob's new peg tube to "light it up" so that they can see if it's properly placed. This seems to take forever. We end up missing our scheduled wheelchair transport, so I have to call and we're put on "stand-by" which basically means it's going to take forever to get home.

But finally, we get home. I was never so glad to see The Pink House and Boomer there, at the door, to greet us. I get Bob all settled into bed and check the calendar where I track his appointments, plus his every 3rd day pain patch and also his bowel movements. I realize he's due for the latter so I get out the laxative to give him with his regular medications.

Almost immediately after giving Bob his medication, he has a bowel movement, and I'll try not to be too graphic, but it was a bit runny. And I'm thinking, that's weird because usually the laxative doesn't work that fast. And then I think oh shit, and once again I mean this quite literally, because something they did to Bob today--the radioactive dye, maybe?--is causing diarrhea and I have just certainly made it worst.

Thus begins a horrific night, where I am up every hour cleaning him up. And the stuff is so watery it's seeping right through the diaper legs onto the bed pad and it's a god awful mess. I keep thinking, it's got to stop soon, because how much can he have in there? But it keeps coming and coming. Around 3:00 in the morning, he loses control of his bladder at the same time, and now I've got an even bigger mess which includes sheets and blankets and pillows soaked with urine on top of it--because Bob has this habit of leaving his you-know-what hang outside the Depends. He does this for, I don't know, comfort? Or convenience to use the urinal? Anyway, after I change out all the bedsheets etc. and haul the whole mess into the laundry room, I tell Bob to please keep his you-know-what tucked in, so if it happens again it will be soaked up in the diaper.

At about 4:30 a.m., he's calling me again. I tell you, I wasn't getting any sleep. This time, he's done it again. Peed all over the bed on top of the other stuff. And I have to change everything out again. And I am exhausted and frustrated and I am so losing it that I scream at him. I mean I really scream at him, at the top of lungs, I scream, "GOD DAMN IT, BOB! KEEP YOUR PECKER IN YOUR PANTS!!!"

And then I think, oh lord almighty, I bet the whole neighborhood heard that. What are the neighbors going to think?  

So, that's the story of Bob's peg tube replacement. He's feeling better now. The new peg tube is working out fine--though it's a bit too short for my liking--and Bob tells me he doesn't like it because "This tube gives you diarrhea." ha! Good sentence there, Bob. And everything is back to normal. And you folks can now have lunch. Bye!

KA-BOOM!

That, my friends, is the sound of Bob's feeding tube exploding. I kid you not. Seriously, you wouldn't think it would do that. And believe me, it scared the living crap out of me. The darn thing just sort of burst wide open, split down the side. Fortunately, it popped close to the Y-port, so I was able to chop the damaged portion off and reconnect it. But talk about a mess.

Guess the thing is more clogged than I thought.

So today, we are off to see a doctor about replacing the peg tube.

And that other sound? A sort of gentle suctioning noise? That's the sound the doctor will make as he sucks our bank account dry....

And I thought January was going to be a quiet month...

The Artist at Work

Bob's sister asked me if I would post a photo of Bob drawing, so here it is:

Bob always draws first thing in the morning, before getting ready for the day, so yes he's a bit disheveled and still wearing his night shirt. But look at that concentration!

And here are his latest two drawings. I always ask him for a title when he's drawing and this first one he calls "Obstacles".

Obstacles

And this next one seems to be linked with that one. Sort of a picture story. He calls this "The Next Day: You Wouldn't Dare!"

The Next Day: You Wouldn't Dare!

Of course, that title is a bit of a mouthful for Bob, so he didn't actually come up with it right away. Our conversation went sort of like this:

Me: What do you call this one?

Bob: I don't know.

Me: That's not a very good title. 

Bob: Right.

Me: Think up a title. I can't post it and call it "I don't know."

Bob, thinking, then finally says some garbled word that sounds like "Real".

Me: Real?

Bob: Yes. (makes a dramatic sweep with his hand) Real.

Me: Real what?

Bob: I don't know.

Me: What does that mean, "real"?

Bob, thinking for awhile, then says, very clearly, "The Next Day."

Me: Good. The Next Day. But what happens on the next day?

Bob: You. Wouldn't. (then something garbled here.)

Me: You wouldn't what?

Bob: (garbled word)

Me: Huh?

Bob: (another garbled word, but sort of sounds like "care")

Me: You wouldn't care?

Bob (rolls his eyes): No!

Me: OK, say it again.

Bob: (garbled word still sounds like "care")

Me: I don't know what you're saying.

Bob: (getting frustrated) garble garble

Me: (trying to think of words that sound like "care") Hair? Pair? Wear? Dare?

Bob: Dare!

Me: The Next Day: You Wouldn't Dare?

Bob: Yes!

Me: That's the title then?

Bob: Yes! (dramatic sweep of the hand here) The Next Day: You Wouldn't Dare!

Seems we have a lot of conversations that go on like this. But I do think he is expressing, with his drawings, the fact that he is quite willing to battle all those Obstacles that are confronting him. And if those Obstacles stop him one day, well, the next day--they wouldn't dare get in his way again.

A Vanilla Scented Candle

The other night, I had a strange dream. In the dream, I heard a noise, so I went to the front door. Outside, the street was lined with semitrailers. Four of them, bumper to bumper, blocking the entire street. The trailers were flatbeds, and the one directly in front of our house was loaded with brightly wrapped presents adorned with silver bows. I went outside. There was a crowd of women on the street. Women were giddy and laughing, they had shopping carts and paper bags and they were going from trailer to trailer selecting gifts. I walked down the line of trucks and saw the next trailer was filled with candles. I reached in and picked up a candle, which smelled strongly of vanilla and was decorated with butterflies. I was thinking how pretty the candle was and how nice it would be to put on our mantel when someone put their hand on my shoulder.

I turned around and saw a large burly man dressed like an old fashion police officer. White shirt, black tie, black cap. He wrenched that candle right out of my hand and I said, "Hey!"

He said, "Sorry, you're not qualified to be here."

In my dream, I sputtered something about the trucks were right in front of my house and who were all these women and why wasn't I qualified if they were? So he led me down the block to an old house, one of those dream houses that do not exist outside this dream. We went up a long narrow staircase which ended at a tiny room crammed with desks and file cabinets. There were about ten people working in this room. The police officer picks up a file folder from one of the desks and pulls out a sheaf of papers and begins to read off "the qualifications" which start out with "you must be between 25 and 45 years old." The cop has a cell phone in his pocket which starts ringing but he ignores it and keeps reading off the "qualifications" which include "you must have been a one-time resident of the local battered women's shelter" and "you must have an ex-husband with the first or last name of Ethan", and I'm thinking that cell phone is really irritating, why doesn't he answer it? And then I wake up.

But I can still hear that darn cell phone.

Then I realize it's not a cell phone, but Bob's feeding pump alarm signaling that it's finished. So I drag myself out of bed, disconnect the pump, flush it with hot water, prepare Bob's medications, syringe them into his tube, change his bed pad, boost him up in bed and get him fresh water and towels. Then I turn on the radio to Bob's favorite station, get dressed, leash up the dog and head out for our morning walk.

The minute I reach the sidewalk, the cool morning air hits my face and I remember that dream and, like a complete idiot, I break down in tears. Right there on the street.

Lately, I've been thinking a lot about physical therapy and how on earth to progress Bob past walking on the rail as we've been doing that for over six months and he seems to be sort of stuck at a standstill. The last time that Bob had an appointment with his primary care doctor, I asked him if it would be possible to get a script for Physical Therapy so that Bob could return to Outpatient Rehab and the doctor told me that "Outpatient Rehab was not set up for people with a chronic condition such as Bob's". Which I don't understand because I know of so many stroke survivors who continue to get outpatient rehab long after that first year stroke anniversary.

And I wonder if, like in my dream of the vanilla scented candle, Bob just does not qualify for help once again. Or if we've just been dealt an unlucky hand of bad doctors and even worse therapists in the past.

The Pain of Pain Management

Monday was Bob's 53rd birthday and also his monthly appointment with his Pain Management doctor.

One of the first things I did after Bob came home from the hospital was get him in immediately to see his pain management specialist. When Bob was admitted to the hospital for surgery, prior to the stroke, he was already seeing a pain management doctor for chronic back/neck pain problems and was taking a prescription narcotic/pain medicine. Once he had the stroke, the doctors discontinued his pain meds. Just like that. No tapering back. Later, I was told that Bob most likely went through a severe medication withdrawal soon after his stroke, while unconscious, which certainly did not help his recovery. Once he became conscious, he was so wracked with pain, not only from his back/neck but also new pain associated with the stroke, that he often laid in the fetal position whimpering for hours on end. The doctors would do nothing about it. Me, of course, I made a fuss. Begging and pleading for a pain management specialist to be put on his case, but always meeting with refusal. It wasn't until Kindred that Bob finally got some pain medication. This only because I marched into the case manager's office, unannounced, and loudly proclaimed that this hospital DOES NOT CARE ABOUT THEIR PATIENTS, then sat down and cried my eyes out. I tell you, eyebrows on that whole floor were raised. The case manager grabbed the phone (which freaked me out, because I thought she was calling Security!) and called the pharmacist and they immediately issued Bob a Fentyl patch.

It was the difference between night and day when he got that patch. I came in the next morning, and Bob, bright eyed and bushy tailed, was sitting in bed calmly watching TV. The patch worked well at Kindred, though from there Bob was sent to the Acute Rehab Hospital where he was to participate in daily therapy, but anytime they attempted to move him, he screamed out in pain. So once again, I was on a mission to get more pain management and once more met with resistance.  I was told by the therapists and doctor in charge that "pain was good" and too much pain medication would make it difficult for Bob  to recover as it would make him lethargic. But still, if Bob screams in terror at the sight of the therapists entering his room, is that good? After many repeated requests from me (OK, I did a lot of bitching), I did get a consult with a pain management doctor from the hospital who ordered a low dose oxycodone.

Which didn't seem to help. Unknown to me, though, the doctor ordered it "prn" meaning the patient had to request it. Bob went days without this new medication because he couldn't speak well enough to request it and the nurses never asked him if he wanted it. When I finally figured out what was going on, I remember sitting by Bob's bedside trying to teach him to say "pain medication", just those two words, over and over. But he never could remember those words so finally, after another zillion phone calls, I got a hold of the doctor again and had him reorder the medication on a time schedule. By then, it was Week 4 of Acute Rehab and the therapists were already making plans to move Bob to a nursing home because of "lack of progress". The last week that Bob was in Acute Rehab and getting decent pain medication, he was finally able to move his right leg. Finally able to participate in the therapies without screaming in pain. By then it was too late. He was discharged.

When I think back to those early months, post-stroke, and all the rubbish I went through trying to get proper care for my husband, it still pisses me off. And this from the hospital that had Bob on two very dangerous doses of prescription meds that his endocrinologist later would tell me could have been fatal if not for the fact that I caught the mistakes on the discharge paperwork. I do believe, if Bob had been transferred to that nursing home as the doctor wanted, with those prescriptions and lack of pain management, he would have been dead by now.

But back to present day. The good news is that after Bob came home and I took him to see his pain management specialist who immediately increased both the patch and breakthrough medication, Bob's pain level has been pretty well controlled. The bad news is that going to Pain Management is a real pain with all the stupid federal/state rules and regulations about the control of prescription narcotics.

Case in point, the law does not allow the doctor to prescribe more than one month's supply at a time, so we have to go to that doctor every single month, pay forty bucks, not to mention it takes all day with the wheelchair transport time involved, the waiting around, then about 3 seconds to consult with the doctor who hands me the scripts, then waiting again for the transport ride back home. OK, I can deal with that if makes Bob's life tolerable. But second case in point, now the law is requiring that any pain management patient must have a drug screening test twice a year. This is to insure that the patient is taking the prescribed drugs and not selling them on the street. Drug screening test = urine sample. And no exceptions to this rule. You all know all about Bob's bladder trouble...

So on Monday, here we are at the Pain Management office and they want another urine sample. And of course, Bob cannot go. Thirty minutes in the bathroom, specimen cup in hand, with the medical assistant hovering in the background just to make sure that--what? I don't pee in the cup instead? then a knock on the door as the doctor is ready to see him, then back in the bathroom afterward, once again trying to pee to no avail.

They tell me he's got another chance to pee in that cup next month. And if he can't, I'll have to take him to the urologist (another day-long trip, another $40) and have him catheterized, sample sealed and signed by the doctor, and cart the damn sample back to the pain management office. If we don't do that, Bob can't get any more pain medications. I asked if I can't just bring a urine sample from home, because believe me, we've got plenty of the stuff here. But noooo. Because a doctor must supervise this peeing and that's the law.

I tell you, it's certainly good to know the government is looking out for our welfare...

Portrait of Diane

Here's a new drawing from my left-handed, formerly right-handed artist. He calls this one (yep, you read that title right) "Portrait of Diane":

Portrait of Diane
by
Bob 
(click to enlarge)

Well, actually he did not quite call it that. When I asked him what he was drawing, he told me "a picture" and when I said, "a picture of what?" he gave me a sly sideways glance and pointed his thumb at me.... So I said, "a picture of me?" and he said "yes."

He has been working on this picture all week and finally, yesterday, pronounced it "done." And I looked at it and asked, "this is still a picture of me?" and he replied "yes."

So I'm thinking, jeepers. This is how he sees me? It looks like some sort of octopus/alien monster with all these arm-things, but maybe that's because I'm always whirling through the house trying to do 10 things at once.... You know, I always wanted to be "an artist's muse", but this? Come on. Then, I think, maybe he's more brain damaged than I thought...

But the more I look at it, the more I am drawn to the "eye" dead in the middle of the drawing. Then, suddenly, I see it: a face! A woman's profile in the middle of the drawing. I didn't see it at first as you have to look at those "white spaces". Sort of like an optical illusion...

The face

So I take the drawing to Bob and I say, "You know, there's actually what looks like face in this drawing. Did you mean to do that?"

And he says, "Well, duh."

The Great Poop Race

It's Day #5 of "The Real Underwear Experiment" and Bob and I are sitting on the front porch. This is our usual morning routine, after bedbath, I take him out to the front porch for some fresh air and also so that I can change the sheets on his bed.

So we're sitting there and Bob says, "I don't know."

And I say, "What don't you know?"

"I don't know."

"Well, if you don't know, I certainly don't know."

Then he's quiet for a minute but he has a funny look on his face. So I say, "Are you OK?"

"I don't know." But he's fidgeting in his chair and sort of pulling at his shorts.

"Is something wrong with your pants?"

"I don't know."

"Are they twisted? Are they uncomfortable?"

"No." But he's still fidgeting.

"Is it your chair? Are you sitting wrong?" Then, I have a flash of horror and I freeze. "Please don't tell me, do you have to poop?"

"Yes."

"Are you sure?" I ask. Because this is a bit unlikely, I mean, Bob's pretty regular in that respect and he's not due for another day or so.

"Yes."

So oh shit! I mean this quite literally. I leap out of my chair and make a mad dash into the house, where I quickly make up his bed. Then, rush back onto the porch and unlock the wheelchair brakes and grab the handles, whirl him around and back him up, wrench him through the screen door and over the threshold, through the front door.  At record speed, we screech up to the bed and I yank the wheelchair arm off and flip the foot rest in and grab the slide board and pretty much launch him onto the bed, then run around to the head of the bed where I yank him up to the top with the drawsheet, then run to the foot of the bed and rip off his shorts and real underwear and zoom through the house into the breakfast nook which has become a medical supply room where I grab a pair of Depends then fly back to the Bob and pull those Depends up so fast they nearly reach his ears.

All this while Bob is looking at me with a rather strange expression, as if to say he thinks I've gone completely mad.

And I say, "OK, we did it! You can go now."

And Bob calmly reaches for the urinal.

GAAAA!!!

So, it was just another one of those aphasia miscommunication moments.

And I wonder why I am always exhausted.

It's Been A Year

The other day, I find myself wearing a pair of used Depends, Men's L/XL, on my head. Yes, on my head. With my face peering through the leg hole.

And I am jumping up and down with the Depends on my head, by Bob's bed, flapping my arms like some kind of demented bird, shouting: "They're not wet! They are NOT wet!"

And then I stop and think, good grief, Diane, you are losing it.

I mean really, call the guys in the white coats.... she's finally cracked. She's got Depends on her head.

I've been in this full-time caregiving business now over a year. Bob came home New Years' Eve, 2010. So it's been a year and eight days and I don't know how many hours.... And I tell you, this is the hardest damn job I've ever had, with the worst pay and no vacations, weekends or holidays off.

And before anyone comments that I need some "respite", I'll tell you what I need. I need a lawn care service, a gardener, a handyman and a cleaning lady... Forget about respite. If I had those things, I wouldn't need a "respite".

Anyway, I was going to write something inspirational to mark this one-year occasion, something about how much stronger I am, how much I learned this past year or how it's made me a better person... but I'm drawing a complete blank.

Except this: I DID IT!!! WHOO HOO!!!!!

And many nay-sayers, including doctors, therapists and other assorted and sundry folks, said I couldn't do it. I'd never survive. I wouldn't be able to "handle" it. I'd end up putting him in that nursing home after all. BUT I DID IT! And I haven't cracked up yet.

Well, I guess, that Depends...

Um, about that. That was my little demonstration to Bob, who insists that every time he pees in the urinal, his Depends are wet and he wants them changed. Which is a big pain in the you-know-what. Not to mention expensive. And believe me, they are NOT wet. Would I really put them on my head if they were?

After my little floor show, a light bulb went off. And I thought, you know, Bob hasn't had an accident at home during the day in months... hmmm... So, this week I'm trying an experiment called Real Underwear. And we're going to try to see if he can wear these during the day without "incident" and if that will "fix" the "wet Depends" dilemma. Of course, Depends will still be depended on at night and for traveling.

Wish me luck. 

And I think a deserve a pat on the back for 

A WHOLE YEAR! I DID IT! 

WHOO HOO!

Another Clogged Peg Tube

Here I was just beginning to think that I had mastered the clogged peg tube, when lo and behold, it happened again.

Bob's peg tube hasn't clogged since, I don't know, last August? Since then, I've developed my own preventative routine which consists mainly of disconnecting his overnight pump immediately when it runs out, then immediately flushing Bob's tube with hot tap water. That, along with an occasional cleaning with Adolph's Meat Tenderizer, has kept his tube flowing. (For those interested, dissolve a small amount of meat tenderizer in a small amount of water, syringe just enough to fill the tube itself and let sit for about an hour before flushing it through with lots of water.) Before I figured this out, the doctors were telling me it was the crushed medications clogging his tube, but I realized it wasn't the medications but the Jevity (the canned liquid "food") that was causing his tube to clog. Jevity is thick and sticky and solidifies really fast. I'd been in the habit of turning off the pump and doing other things before disconnecting Bob's tube and flushing it. Big mistake. Though I didn't realize it at the time, I mean, how many times had I seen nurses in the hospital do the very same thing?

So I thought I was on top of it until the other day, when I disconnected Bob's pump and tried to flush it out with the hot water... and nothing. Nothing but a huge water balloon snake at the top of the tube growing fatter and fatter. Damn. So I had to bring out the big gun, the cannula brush.

Forget Coca Cola, forget hot coffee (I think, really, it's the "hot" part and not the coffee part, that works), forget even the meat tenderizer, when the tube is clogged like this the only thing that really works is going in the tube and fishing the clog out. The first time that Bob's tube clogged like this was back in July (see post July 27th, 2011, Clogged Peg Tube, ER & Hot Coffee) and I freaked out and ended up at the emergency ward with him.

Sometime back around August, the second time it clogged this bad, I knew better than to end up in the ER, I mean, what the heck did they do but try to fish out the clog with every sort of gizmo imaginable and then pour in some hot coffee? I figured I could do that myself. So I brewed up some coffee and went hunting through the house for something to shove down his tube. I tried a bunch of things, including, believe it or not, a coat hanger, which actually got up in the tube but not far enough to unclog it. (Don't worry, I sterilized the stupid thing first.) Nothing was working. Straws were too wide, screw drivers too short. I finally found some picture hanging wire and thought, ah ha! This will work. So I snaked the wire very carefully down the tube and got it through, but when I took it out and tried to flush water through, the tube was still clogged. So I tried it again, but this time, to my horror, the picture wire popped right through the side of the tube. Through the side of the tube. I had put a hole in my husband's peg tube! You can imagine how freaked out I was at this point. Fortunately, the wire had poked a hole near the top of the tube and so, I got out the scissors and snipped off the end. Problem solved, but the tube was still clogged. So I broke down and called the doctor's office for advice.

After a lot of back and forth, I was finally connected with a very nice woman in the GI lab. She told me to come to the hospital and she would leave me a cannula brush at the information desk. A cannula brush is a little Christmas tree shaped bristle brush at the end of a long plastic-coated wire. So I ran to the hospital, picked up not one, but two brushes, talked with GI lab tech who gave me directions and also told me about the meat tenderizer trick. But when I arrived home, the phone was ringing. It was doctor's office, who told me NOT to use the cannula brush, but to bring Bob in immediately. And bring the brush with me. So I had to get Bob dressed, into the wheelchair, into the car, break down the wheelchair, throw that in the trunk, drive to the hospital, repeat the process of getting him out the car and into the doctor's office only to find that the doctor had left for lunch.

So the nurse took my cannula brush and pushed it through Bob's tube and got out the clog. Then she threw the brush away! She threw it away! And told me that the doctor didn't want me inserting the cannula brush because it was too dangerous and I might poke a hole in Bob's tube. I didn't have the courage to tell her that I already poked a hole in his tube that morning with the picture hanging wire. Then she told me if that ever happened, I could always just snip off the end of the tube with a scissors.  Oooh-kay. Didn't have the heart to tell her that one either.

But thank goodness the lab tech had given me two brushes. So I still have one and now I am armed and dangerous.

So back to the present day, I got out the cannula brush and pushed it in, pulled it out, pushed it in, pulled it out. Flushed with hot water, repeat, and the @#&@##! tube is still clogged. This I did repeatedly for thirty minutes to no avail. I'm thinking, crap, I'm going to have to drag Bob down to the doctor's office only to have the nurse steal my cannula brush again and charge us $30.00 to boot. And I don't want to do this. So I keep at it, intermittently praying (please, please unclog this tube) and cursing (god damn it, unclog you @##! tube!) for about 45 minutes, but still the water will not go through. Finally, I took the brush and measured it against Bob's tube (you have to be careful not to enter his stomach with the brush) and I measured it right up to the opening in his stomach then made a mark on the plastic wire with a Sharpie and I snaked that sucker all the way up to the Sharpie mark, and finally, the clog of Jevity poured out.

Well, that was enough excitement for this week. And they say caregiving is a boring job.

Troubles

Troubles
by Bob
(click to enlarge)