Posts Tagged 'PICC line'

When Your Service Dog Is Too “Smart”….

OK, so now you know I’m writing and blogging elsewhere, although I still plan to do my service dog blogging (and related stuff) here until I can get my own domain set up. Except for today’s post, because it turns out that won’t work. So I’m posting it on my writing blog, SharonWachsler.blogspot.com. I apologize for the inconvenience. Future Gadget- and Barnum-related posts will be back here at After Gadget!

You asked so many great questions about my experiences as a service dog (SD) partner and trainer that it is taking quite some time for me to write all my answers. I am also still finishing Barnum’s training. Until now I wanted to wait to train him to open the outside door to let himself out because I wanted to make sure he was really solid on having his door-opening behaviors under stimulus control. Which leads me to today’s topic.

Two of you asked about my funniest or most embarrassing experience as a SD handler, and that brought to mind this story which I’ve posted at SharonWachsler.blogspot.com.

– Sharon, the muse of Gadget, and Barnum, SD/SDiT (who will hopefully know better)

What Works & What Doesn’t

This was not the way I’d planned on making this announcement, but it seems that chaos theory is in effect, and I’ve given up for the moment on doing things “just so.”

I got my powerchair repaired last week. I really thought it was finally, truly fixed, but I had no opportunity to test it because it was raining every day. Water + electronics = bad idea.

Then Saturday dawned bright, sunny, and clear. I woke up early to allow time for my PCA to take Barnum and me out for an adventure. Part of the reason I had to wake up early is that my infusions have been taking about two-and-a-half hours, twice a day, which keeps me stuck in bed even more than I already am, which is really aggravating.

I had thought the infusions were so slow because the pump was faulty, so I got a new one from the infusion company, and it was still super slow, maybe even slower.

Infusion Pump with extension tubing, saline flush, heparin flush

Pump: Not Working?

Then I decided probably my PICC line needed to be “roto-rooted,” so the nurse and I used an enzymatic treatment in it (“Cath-Flo”) to dissolve the fibrin sheath that always builds up in my lines and prevents blood return, among other things. After doing the Cath-Flo, I did get blood return again, but it didn’t speed up my infusions.

Sharons inner upper arm and elbow with PICC line and dressing. The PICC line is a very thin white plastic tube coming out of a round "biopatch" which covers the entry site of the line. Several steri-strips hold the biopatch and line in place. A hypoallergenic clear dressing that looks like a piece of plastic covers the whole area, with two pieces of hypoallergenic medical tape holding down the dressing. The line comes out from under the dressing to a red clip, which is opened when flushing or infusing. A white plastic cap connects the line to a clear extension tube, which is hooked up to syringes with medication or saline for infusing or flushing. No needles are involved.

PICC line: Not working?

Spending the first few hours of my day infusing has meant that it’s been very difficult for me to do as much training as I want with Barnum. It also often prevents us from going anywhere, because by the time my infusion’s done and I’m up and about, my PCA is leaving, and the next one doesn’t come till it’s getting dark and/or buggy.

So, we loaded my chair into the van, and went to the center of town (about three miles away), to the library. My PCA unloaded my chair and brought it around to me.

Barnum had been very good in the car, doing sits, downs, nose targeting, eye contact, etc. He was calm and didn’t vocalize. I was quite pleased with him.

However, our biggest challenge is always what happens when Barnum gets out of the van away from home. That’s usually when he loses focus completely, forgets I exist, doesn’t know how to sit on cue, pulls on lead, etc.

Barnum inside his crate, lying in "dead bug position," asleep with his head thrown back, all his legs in the air, just letting it all hang out! He is lying on a tan puffy dog bed inside the crate, and there is a red Kong against his butt.

Barnum: Um, working. . . ?

With Jersey and Gadget, I trained a default sit upon exiting the van. This was so that they were always under control upon exiting. If the doggy is sitting, he can’t bolt into traffic or take a whiz or snork up somebody’s dropped food.

I have tried to train a default sit with Barnum, but he gets so excited about going anywhere that I have only recently managed to get him to sit upon exiting the van in our very own driveway when we haven’t even gone anywhere. That, in itself, had been a big accomplishment I’d just have him get in the van, sit, get out of  the van, sit, lather, rinse, repeat. So, he doesn’t have a default sit yet, but at home now, most of the time, he will sit when cued after exiting the van.

So, we are in the (exciting!) library parking lot. I sat in my chair outside his door. My PCA opened the door, and I cued him to sit in the van. I clicked and gave cheese. Sit again, C/T. Sit, C/T. Then, I cued him to jump out and clicked while he was in the air, hoping he’d turn to me for his treat, and I could then cue a sit. I did, and he did! Yay!

He popped out of the sit when I clicked, so that gave me the opportunity to cue another sit, which he also did. I c/t for that, and then just kept c/t for him staying in the sit (I know!) while we were in the parking lot.

[Release the winged pigs to soar to the azure moon!]

My daily use powerchair. Gray vinyl captains seat with pocket in the back, beat-up black foam armrests, single post connecting seat to base, which is candy-apple red, with gray front-drive wheels and rear casters, and a black footrest and anti-tip wheels in front. Barnum is standing with his front paws on the footplate, looking into the camera.

Barnum & Indoor pchair: Working!

Was this the beginning of a day in which Barnum was perfect, focused on me all the time, followed every cue, and never pulled on leash? No, of course not. However, he was much more biddable, focused, and interested in c/t than he’d ever been before in a strange location. For example, most of the time, his leash was loose, which is really saying something! Also, most of the time, he was very eager to earn treats.

My PCA drove home, because her shift was ending soon, and Barnum and I started to walk home. We had a lovely time. He pooped, which was great, because he used to not poop away from home. (I had my poop bags with me, of course.)

We went into the Town Hall to observe a No Nukes rally. He’s heard live music before, so that didn’t bother him. The only thing he reacted to was everyone bursting into applause. Apparently, he’d never experienced that before. He startled, and then he settled right down again. He wanted to snorffle people and — even though I managed to cue a couple of simple behaviors — he was having trouble focusing on me, so we left after just a couple of minutes. It’s a good start for our first trip into an indoor public venue (except when he was a little puppy).

He got to experience a lot more traffic than he’s used to, too, since usually only a couple of cars ever pass us on our walks. There were motorcycles and all manner of vehicles passing by, because we were on our town’s main road, and he became less interested and able to ignore the vehicles as time went on.

Two preschool girls wanted to pet him, so I had them “help me train Barnum” by asking them to wait to approach until he was sitting, then pet him, then give him a treat. If he broke his sit, they backed away and came back when he sat again. He was excellent with them. Very calm. He did snorffle one when we were done practicing sitting for petting, which was a cause for much giggling.

Further down the road there were six beautiful horses in a paddock who all came to the fence, looking very friendly. So, I swung over to say hello. I petted some muzzles and offered a cherry, which nobody was interested in. Barnum was at first quite concerned about these HUGE animals that were snorting and swishing their tails and committing other strange acts, but after seeing me talk to them and pet their muzzles, he got bored and didn’t care about them anymore. Awesome! (For the record, he met horses and cows when he was a puppy, but I don’t think he remembered them.)

We kept heading home, and then I stopped at our town general store. I left Barnum outside, because it’s hard enough for me to maneuver in there, and he is just not ready for training in that kind of cramped, food- and smell-intensive environment. So, I left him tied up outside with a friendly teenager who was happy to pet him and watch him. I bought a snack for myself and a few biscuits for Barnum. I heard him distress barking after I’d been inside for a couple of minutes, so now I know that’s something we need to work on. He doesn’t do that at home, but I guess being left with a stranger in a strange land is different.

We went another distance. It was hot and dry, and Barnum was drinking a lot of water. I stopped at a friend’s house to get his bottle refilled. Eventually we stopped on the side of the road so I could have my snack and Barnum could  rest. It took a while, but he eventually did lie down, which was another first — lying down and relaxing away from home! Yay!

I was so happy! A real day out, like a regular person! My chair seemed to be in good condition. Barnum was showing his maturity; I was thrilled with him. I decided I would write a blog post declaring that I had a working dog and chair. Yes, folks, he is officially my SDiT again!

The walk helped me figure out exactly the service-dog leash design I wanted to ask my friend Karyn to make me to fit with this chair. I was pondering whether I should ask for purple webbing, to match the chair, or royal blue, to match Barnum’s working backpack. (Pictures of Barnum in his gear in an upcoming blog, or up now on our Facebook page.)

We set off again. We’d probably gone about one-and-a-half of our three miles home when it started to rain. Oh no! Then it stopped. Phew!

We kept going. It started to rain again. I headed for the sides of the road that had the most leaf canopy as cover, and for a while, we stayed relatively dry. I emptied one of Barnum’s treat bags and put it over my chair’s controller (the joystick and controls box). It rained harder and harder, until it was a major downpour. The only way it could have poured harder was if it was mixed with hail. It was very bad. I was trying not to panic.

We came to a fork in the road, and I couldn’t read the signs, so I just kept straight without thinking about it. Since I go out so rarely, I don’t really know my way around my own town. A man in a truck came by and asked if he could help. He said he could give me some tarps and a raincoat. I said that would be great. He drove off to get them.

I kept going, as fast as I could, trying to get home before the chair got too wet. I avoided puddles and kept trying to drive under the leaf canopy as much as possible.

Suddenly, I realized that the road did not look familiar anymore. A car came by with two teenage guys. I asked them if this was my street, and they said no, it was (another street). I believe I swore, loudly. One said, “Oh, you just need to go back and turn around,” telling me how it was no big deal, and I looked at him in utter disbelief because he had apparently not grokked that I was in a WHEELCHAIR, not a CAR, and that going a significant distance to turn around in the pouring rain was kind of a big deal!

I asked them if they could please, please call my PCA and ask her to come pick me up. They said they don’t have cell phone reception. Well, duh! We don’t have cell phone reception in our town!

I said I know, but when you get home, when you get where you’re going, can you please call? They didn’t know if his mom would be home, etc. Basically, they didn’t care about me and they didn’t want to help. That is not typical of my small town, but in their defense, I think they were baked.

Barnum and I turned around — he was enjoying the rain, very cool and refreshing for him — and beat it back to the intersection. The nice guy in the pickup came back and gave me a raincoat, which I put over the control box and armrest on that side, and also put a tarp over the back of the chair. I asked him to call my PCA, and gave him her number.

I turned on my headlights, because now not only was the visibility bad for other drivers, but I couldn’t see behind me because of the flapping tarp. These are very hot lights, and I had to constantly check that all these highly flammable materials were not flapping too close to them.

I was trying to go as fast as I could, but that encouraged Barnum to pull. It was impossible to go quickly and do the loose-leash walking protocol, so I eventually decided that this was enough of an emergency — trying to keep my chair from dying — that I’d let his LLW go to hell under the circumstances.

Eventually my PCA drove up. I asked her to take Barnum home and come back with my van to take my chair home. She did, and we eventually got the chair in the van, after doing everything wrong several times because we were panicking and couldn’t see and I was exhausted and not thinking clearly. Upon arriving home, we wiped down every part of the chair we could. I had managed to keep the underside dry. I also thought the joystick hadn’t gotten too went, but it’s really hard to know. Furthermore, some controllers are more sensitive than others, and you never know if yours is ultrasensitive till you kill it. I plugged the chair in to charge and hoped really, really hard that it had not gotten damaged by the rain.

I was worried about the chair, but I was also elated that I now felt confident enough in Barnum’s progress at home and beyond to declare him an official SDiT again! In fact, I plan to start taking him for very, very short trips inside local establishments (such as stores or our library), as soon as possible.

The next day, I went to unplug the pchair charger and see if the chair was working. The charger’s fault line was blinking — a very bad sign. I unplugged it, flicked on the chair’s power switch, the lights came on, then they flickered out. That’s all she wrote. It’s been dead as a doornail since.

Pchair with headlights

Outdoor pchair: NOT working!

I spent a couple of days raging and crying. The problem is that this chair has had problems since the very beginning — and it did seem to lose power at one point on Saturday, before the rain. So, it’s possible that it died again because it’s a lemon and that the rain had nothing to do with it. OTOH, one of the most likely ways to put a chair out of commission is to take it out in a rain storm or spill a drink on the controller, so it could simply be that the controller needs replacing.

The problem is that it’s a one-and-a-half hour drive in each direction to get it repaired, and I won’t know for sure whether it’s the controller till we get there. And what happens if  they replace the controller (for a few hundred dollars, since it could well be my fault because I was out in the rain), and then it dies again? People have told me I should return the chair and demand a refund and get another chair, but the problem is that there is no outdoor powerchair option for someone in a rural area like me, who has to go up hills and across rough terrain, through a traditional vendor. There are chairs made specifically for off-roading, and they cost $15,000 to $20,000!

So, if you can’t drive, and you rely on a powerchair for mobility — and when Medicare won’t pay for a chair that can handle outdoor conditions (because their policy is that you’re only eligible for a chair if you need it to get to the bathroom and the kitchen and bed; if you use it outdoors, that is considered “not for its intended purpose,” because, you know, if you’re disabled, you’re not supposed to have a life. You’re just supposed to be able to eat, sleep, and piss) — then what the hell are you supposed to do? Well, if you live in the city or in suburban areas, you can probably get around in a chair that was not made for use outdoors.

People keep asking me about scooters. There are powerful four-wheel scooters that cost much less than powerchairs, and I used to have one, but I’m too disabled to use one, now. You can’t recline or have elevated leg rests, and the biggest deal of all is that you must holds your arms straight in front of you, gripping the handle bars the whole time, sort of like riding a bicycle. That was tiring for me even when I was way less disabled than I am now. I’m doing better than I was a couple of years ago, so in a moment of optimism, I tried just holding my arms out in “scooter position” to see how it felt, and after literally two seconds, I couldn’t do it anymore. That was depressing. (Thanks, Lyme disease!)

People also ask me, well, what about your regular use (indoor) chair? Couldn’t my PCA drive me to the store or town center or wherever I want to train with Barnum, and I’d use that chair to get around in the parking lot or store? Nope. There’s no way to get the chair into the van; it doesn’t work with my van’s lift. I either need to get a different lift (ideally, a platform lift that will work with any of my chairs or any future chairs), or I need to get my daily use chair adapted for my current lift. Or, I need to figure out how to take the lift bar off my old chair so I can access the battery compartment, and buy new batteries for my old chair that is adapted for the van lift, but has almost zero juice in it and is generally in lousy condition, and use that for going places (which is currently how I go to the doctor or hospital). But I hate to put any more money into that chair, in the condition it’s in. (Medicare stopped covering it the minute I got my new chair, even though I couldn’t use my new, indoor chair for close to a year because I was outgassing it.)

So, I finally called the people who built my (big, purple, dead outdoor) chair, and we decided that I would come out, and they’d check the controller, and if it was the problem, they’d replace it, and I’d pay for it. These are brand-new controllers, not recycled. I believe they are the same as the one I just got (and possibly ruined), which I really liked, so I’m still holding out hope. I am also planning on writing and bringing with me a contract for us both to sign, warranting the chair to continue working without repairs for some period of time. Because if it craps out again, I am so done with them, and I will return the chair and demand a refund.

But, before we can drive the hell out to get the chair repaired, we have to get my van repaired! That’s right — something else that ain’t working right. My van is currently making three different kinds of worrisome sounds, as well as giving off gasoline fumes (which makes me sick, due to my MCS). Wrangling two people who can take the van to the mechanic and two people who can bring it home on the same day is always stressful, and this time is no exception. And I’m sure, because it’s an automobile, that the repairs will be several hundred dollars, right?

Big, green boxy cargo van glints in sun at the end of black metal wheelchair ramp. Sharon sits  next to the van pinting up the ramp to Gadget, who is in front of her, and about to carry a white canvas grocery bag to the house.

Van: Not working

The van is now nine years old, so the repairs will start piling up, but I can’t get another one because nobody makes cargo vans anymore! This was my only option for a wheelchair-accessible, all-wheel drive vehicle (and the most MCS-accessible option for me) and they are no longer manufactured. Apparently, the only big AWD or 4WD options are now SUVs or pick-ups, neither of which accommodates a chair lift. The current trend for solving the problem for vehicle accessibility, as vans go the way of VHS and audio cassettes, is to lower the floor of a vehicle. Guess where a lowered floor is a really, really bad idea? Bumpy, hilly, country dirt roads! Where I live! The other wheelies I’ve talked to about this have basically told me I have to keep the van running forever.

Then, yesterday, I woke up and started my infusion at 10:30 and went back to sleep, figuring the pump alarm or Barnum would wake me up when it was done, two hours later.  (Why waste awake time on infusing?) When I woke up at 1:30 PM, only 10 ml of the 50 ml of medication had gone in! It just stayed there, at 10 ml, no matter what I tried, so I finally did it manually, as an IV push of 40 ml over the course of an hour, which you’re not supposed to do, I think, but I’m a DIY kinda gal when it comes to health care.

Meanwhile, I called my nurse, who thought I probably needed a new line. I called the infusion company and begged them to deliver a new pump right away, as a last, desperate attempt to make sure the problem was indeed my PICC line. I tried all day to reach my doctor to ask her to put in orders for a replacement line with the hospital, which eventually my doctor did do before leaving for the weekend. (My doctor takes Fridays off.)

The infusion company delivery person came with the pump and said he needed to take the old one back. I didn’t want to give up the old one because of course the new one reeks of fragrance (as does everything else from the infusion company), whereas the old one has outgassed by now. I pleaded with him to just give me one day, and I would return one of the pumps tomorrow.

Last night I set up my infusion with the new pump (enclosed in a zip-loc bag except for the tubing coming out), and lo and behold, it infused in 40 minutes! Yay! Yay! Yay! I don’t need to go to the hospital to get a new line!

In summary, here are the current scores.

Working Breeds:

  • Dog (Barnum, Bouvier des Flandres)
  • PICC line (left arm)
  • Pump (fragrancy Bard Mini-Infuser)
  • Helpers (driving me to get chair repaired, driving van for repairs. So grateful to them!)

Non-Working Breeds:

  • Van (Chevy Astro Cargo, call name “Big Green Monster”)
  • Powerchair (Purple FrankenChair)

– Sharon, the muse of Gadget (definitely was working till he stopped), and Barnum, working SDiT!!!

An Alert Pup!

Even when Barnum was a tiny puppy, I knew he had great potential for sound alert. He’s very sensitive to, and inquisitive about, noises. He also seems to have terrific hearing, which is a nice change of pace. (Gadget, I believe, was hard of hearing, and I think Jersey’s hearing was fine, but she just didn’t care much about sounds that were not food related.)

Why, as a hearing person, do I want Barnum to respond to certain sounds?

  • To alert me to sounds, such as timers and alarms, that I don’t hear because I’ve fallen asleep;
  • To alert me to sounds that I’ve forgotten I heard (timers and alarms), because of my cognitive impairment and memory problems; and
  • To make him faster and more effective at retrieving the telephone when it is ringing, and I can’t get to it.

My plan was to train Barnum to perform the sound alerts that Gadget did, primarily alerting me to the stove timer going off. This was a very difficult skill for Gadget to master; it took several months of intensive training. Nonetheless, I’ve been confident that Barnum would learn this alert more solidly and quickly because he is much more attuned to sounds than Gadget was, and because I am a better trainer now.

I trained Gadget to alert to the stove timer as part of my effort to stop burning my meals to cinders.

However, a couple of years later, this skill became useful for an unexpected reason: I got Lyme disease, and for many months, I had to take antibiotics at 12-hour intervals. It is very rare for me to be awake and coherent for both ends of a 12-hour shift, every day.

Thus, Gadget became my medicine reminder. After taking my dose, I’d reset the timer for 12 hours. If I happened to be asleep when it went off, Gadget would hear it, open my bedroom door, run to get his orange squeaky “alert balls” and bring one back and wake me up with it. (You can see a [poor] demonstration of this skill in the second video in this previous post.)

Barnum Takes the (Sound) Stage

In a very laid-back way, I have been encouraging Barnum to pay attention to sounds ever since he was a little puppy. The sounds I’ve focused on are the ring of the cordless phone and the beeping of two timers: the stove timer and my digital “personal timer” (which lives on my overbed table, and which I use to remind myself of phone appointments or other happenings I’m likely to forget).

By “laid back,” I mean that I hadn’t set up training sessions to work on this. I just took advantage of opportunities that presented themselves (also known as “capturing,” in clicker parlance). In other words, if Barnum and I happened to be near the cordless phone when it rang, I’d  act excited, and say, “It’s the phone!” Then I’d toss him a treat. If he oriented to the phone (i.e., if he looked at or moved toward the phone), that definitely earned a click/treat.

I used the same approach with the kitchen timer.

I didn’t really consider this training; more like “pre-training.” My primary goal was to prevent Barnum from becoming so acclimated to these sounds that he stopped noticing them when the “real” training began.

A few weeks ago, because it was convenient, I decided to get slightly more proactive with building a foundation for sound alerts. Whenever my personal timer went off, I’d toss Barnum a high-value treat. He soon was leaping up and running over whenever he heard my timer, and I thought, “Huh, I should probably do something useful with this behavior.”

This urge was strengthened when we were in the living room a couple of weeks ago, and the phone rang. Barnum turned toward the phone and barked at it! I never taught him to do that. I was pleased and impressed.

Barnum Responds to Infusion Pump Alarm!

That’s when I realized I could — and should — train Barnum to be my infusion-pump alarm back-up.

Those of you with chronic Lyme disease or who have had chemotherapy or other long-term intravenous medication are probably familiar with the ins and outs of infusion pumps. For those who aren’t, here’s a crash course in home-infusion therapy, and how a service dog can be of use.

First, there’s the PICC line. PICC stands for “peripherally inserted central catheter.” It’s a flexible little tube that goes inside a vein from your upper arm to your heart, delivering medications into your bloodstream much more efficiently than by any other method. (Here’s a site on PICCs if you want more information.)

Closeup of Sharons arm with PICC line coming out of biceps

I know it looks weird, but it doesn't hurt, and I'm quite used to it after 18 months.

[Photo description: Sharon’s inner upper arm and elbow with PICC line and dressing. The PICC line is a very thin white plastic tube coming out of a round “biopatch” — which looks like a nickel-sized styrofoam disk — in Sharon’s biceps. The biopatch covers the entry site of the line. Several steri-strips hold the biopatch and line in place. A hypoallergenic clear sterile dressing that looks like a piece of plastic covers the PICC area, with two pieces of hypoallergenic medical tape holding down the dressing. The line emerges from under the dressing to a red clasp, which is opened when flushing or infusing. A white plastic cap connects the line to a clear extension tube, which is a port into which syringes of medication or saline can be inserted for infusing or flushing.]

The above photo description tells you the rest of what you need to know (or maybe more than you wanted to know!). The only unusual thing others with PICCs might notice is that this is not a typical PICC dressing. Most of the stuff normally used for cleaning and dressing PICC sites makes my skin erupt and blister in a nasty way. (Thanks, MCS!)

At any rate, I do two infusions a day, 12 hours apart.

To do an infusion, I have to clean the port with a disinfectant, then flush my line with saline (the smaller white syringe in the picture below). Then I hook up an extension tube between the antibiotic and my PICC line. Infusing the antibiotic (the really big syringe attached to the pump in the picture below) takes about 45 minutes. The pump ensures that all the medicine goes in at a slow, steady rate.

When the tube of antibiotic is empty, the pump alarm sounds, which is a loud, grating, “Beep, beep, beep,” and a red light flashes. The I unhook my line, clean it, and flush it with saline again, and finally with heparin (the yellow syringe below).

Infusion Pump with extension tubing, saline flush, heparin flush

The red light on the pump indicates the alarm is going off, and it's time to unhook the extension tubing and flush my PICC line.

[Photo description: two 12 millilitre syringes, without needles, one yellow, one white, lie on a red background next to a 60 millilitre syringe which is attached to a rectangular, brown Bard pump, about nine inches long and three inches wide. Extension tubing comes out of the big syringe. A red light is on at the bottom of the pump, next to the word, “Alarm.”]

Rather, that’s what’s supposed to happen, and most of the time, it does. However, on occasion, I fall asleep while I’m infusing. When this occurs, I wake up many hours later, my line still connected to the pump, the flushes laying nearby, unused. Tellingly, the pump switch has magically been moved from “Alarm” to “Off”!

Actually, I’m pretty sure no magic is involved. The only reasonable explanation is that I wake up just enough to switch the alarm off and then fall immediately back to asleep. I have no idea how long the pump is alarming before I turn it off in my mostly unconscious state. In the morning, I almost never remember waking up and turning off the alarm.

This is less than ideal! The line should really be flushed immediately after infusing. Also, if I were to ever startle awake and move quickly, I could potentially pull the line out of place (particularly because my dressing does not allow for as secure an attachment as is standard practice for PICCs).

Sharon Falls Asleep while Infusing

Exciting reenactment: I fall asleep while infusing.

[Photo description: Sharon lies asleep in bed, propped up with pillows. She wears gray sweatpants and a purple sweatshirt over a pink nightshirt. On her left side the sweatshirt has been pulled up to expose her upper arm, where the PICC dressing and tubing are visible, attached by a long, thin, clear line to the infusion pump, which rests against Sharon’s thigh. On her legs, the saline and heparin flushes lie, waiting to be used after the infusion is over.]

I realized that a really useful skill, and one that would probably not be hard to teach, would be to train Barnum to wake me when my infusion pump goes off.

I started out with classical conditioning, just tossing Barnum one of his favorite treats each time the alarm went off. He made the connection very quickly — within a few days.

Then I moved to operant conditioning, shaping Barnum’s behavior. Once he showed any reaction to the pump alarm, I clicked for the response. As always when shaping, I started with whatever small behavior he offered, such as cocking his ear toward the sound, or turning his head toward it, or just looking up from a nap. Eventually I withheld the click until he was trotting over.

My plan had been to keep upping the ante to get him to jump on the bed, nudge me, etc., until I woke and reward him.

Sunday morning was the first, and only, time I cued a behavior — jumping on the bed (“Paws up!”) — before clicking and tossing the treat.

That night, as usual, I flushed with saline, connected the pump and began infusing. I had my clicker and Barnum’s special treat ready for when the alarm went off. About half an hour into the infusion, I got the suddenly sleepy, struggling-to-stay-awake feeling. I thought that knowing I had to be awake to capture and click Barnum’s response to the alarm would keep me awake.

I was dreaming — literally!

The next thing I knew, I was awakened. All was confusion. The bed was moving, and I didn’t know why. There was a strange noise.

I struggled to orient myself.

The first thing that registered was that Barnum was on my bed, panting and smiling at me. Then, the strange sound resolved, as well — it was the infusion pump alarm.

Amazing dog! Barnum had jumped on the bed of his own accord and woken me when the alarm went off!

I praised him as I scrambled for the clicker, and tossed him his prized treat. I continued to praise effusively, tossing a large handful of other treats I happened to have in my bed.

Barnum "Paws Up" on Bed
I’m here! Wake up! I want my treat!
[Photo description: Barnum, a shaggy black brindle bouvier, with only one eye peeking out from under his hair, has jumped partway onto the bed, with his front legs and chest resting on a dark raspberry-colored comforter. He looks relaxed and slightly expectant. Sharon’s powerchair is visible in the background.]

I was so excited! With Gadget, I had had to spend weeks just on feigning sleep during timer-alert sessions. I will plan to train this way with Barnum — pretending to be asleep when the alarm goes off. He’ll have to really work for that treat by jumping on the bed, nudging me, licking me, etc.

However, I had thought that if I actually did fall asleep while Barnum was at this stage of training, he would have popped up from the floor, looked for his treat, and when he didn’t get it — when I just lay there, conked out — he would give up and go back to bed.

Instead, Barnum made a mental leap that required not just thinking (i.e., problem solving), but self-confidence, too.

I believe our recent focus on lots of free-shaping sessions (as I described in a previous post) led to this breakthrough.

Now, saying that Barnum is a service-dog-in-training feels more legitimate. The pay-off for our training is no longer just fun or incremental steps in increased obedience and communication; the real-world application of practical service skills is becoming apparent.

Barnum’s increased exuberance and eagerness to offer behavior in the absence of a cue or other encouragement from me is thrilling!

An Alert Pup . . . and a Groggy Human

Any assistance dog partner will tell you that there are two members of the team, and both have to do their jobs. Sunday night, Barnum rose to the occasion, while I fell asleep on the job!

After I shut off the alarm and finished fussing over Barnum, I turned my attention to unwrapping my saline and heparin flushes and looking for my sterile wipes and line caps — the supplies necessary to finish the infusion process. . . . The next thing I knew, it was morning, my left arm was still out of my shirt sleeve, and my PICC line was stretched down to the pump!

These are the times when both the pros and cons of being a disabled person training my own service dog come into sharp focus.

On the down side, I had underestimated my functionality. I had thought that being awakened by Barnum, and being forced to interact with him, would keep me lively enough to finish the infusion process. I had not factored in how my cognitive impairment (in this case, memory and concentration issues) would intersect with my sleep disorders. I had not given enough weight to how hard it is for me to “stay on task” when my body and brain switch from “nothing you do will allow you to fall asleep” to “nothing you do will allow you to stay awake”!

On the upside, I now know that I have to build in back-up systems after the initial wake-up, to keep me awake, or to wake me repeatedly, until I finish flushing my line. This is perhaps the biggest bonus of partner-training: I can trouble-shoot and adjust skills as we go along, because nobody knows my disabilities better than I do.

Another bonus to doing all this practice with him is that I am also training myself.

This was the unexpected perk to training Gadget to alert me to the oven timer. People who don’t have brain injury often don’t understand that their suggestions of seemingly straightforward solutions to memory problems, such as “write a reminder note” or “set a timer” require the cognitively impaired person to remember to write the note or set the timer, and also to remember where the note is, to remember what the timer going off means, or to remember to jump up the instant the timer goes off and go do the thing the timer is reminding one of. I write notes all the time to remind myself of what to do, and then I misplace and forget about the existence of the note!

Indeed, before training the memory alert with Gadget, the biggest impediments to using a timer to prevent me from burning my food had been:

  1. Forgetting to set the timer in the first place;
  2. If I did set the timer, not responding the moment the timer went off (e.g., if I was writing an email, I’d think, “I’ll just finish this sentence,” and then forget that the timer ever went off) and keep on keyboarding; and
  3. If I did get up to go to the stove as soon as I heard the timer, I usually became distracted by something on the way (even though the stove was only a few feet from my desk), and forget the original reason for getting up.

However, when I worked for months on training a complex timer alert with Gadget, I spent a lot of time focused on setting the timer, remembering to keep clicker and treats handy to respond when the timer went off, etc.  It became a form of cognitive-behavioral therapy for me. The end result was that I was much more likely to remember to set the timer when I put something on to cook, and I was also more likely to respond to it when it went off, sometimes because Gadget alerted me, but sometimes simply because my mind was better trained to hone in on the timer.

Thus, I’ve decided that the best way to address this added dimension of the infusion pump alarm with Barnum is to train us both to following this protocol:

  1. When the pump goes off, Barnum bugs me (jumps on the bed, nudges me, licks me, etc.), until I wake up.
  2. The instant I wake up, I hit my personal timer (set for six or seven minutes).
  3. I turn off the infusion alarm, and reward Barnum for having alerted me.
  4. I attempt to stay awake to unhook, infuse, and put things away.
  5. However, if I do fall asleep before I’m done, the other timer will go off, and Barnum will alert to that, leading us to repeat steps one through four.
  6. If I do get my line taken care of, and the timer goes off before I’m done, I reward Barnum for alerting to it anyway.

In other words, I’ve had to add a step. Or a step that repeats itself. So, it’s really just more of the same. Which is sort of the essence of clicker training: once you build a foundation, it’s all variations on a theme, requiring flexibility, creativity, and knowing the rules by which you’re playing.

This is also the essence of a service dog partnership.

And of life.

I’m so proud of my dog! And I’m not feeling too bad about myself, either. Nice change of pace.

– Sharon, the muse of Gadget (I’d have done better with the timer alert if you’d trained it better!), and Barnum (What’s that sound?!) Medical-alert-dog-in-the-making!

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.


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