Paul Two-Navels No More

On September 7, I was back at UWMC getting cut by Dr. Futran. Amazingly, I actually requested this, and went under my own power.

When they removed my feeding tube back in December, it was a fairly simple process. Essentially, they grabbed the tube and pulled it out. However, since the tube had been in there for months, the skin had grown around it, so that when it got yanked out, I was left with a dimple in my belly. For the last 10 months I’ve had two navels; the one from my umbilical cord, and the one left by my feeding tube.

Happy as I was to be eating again, and no longer dependent on the tube, the extra dimple really annoyed me. I wanted it gone. But I didn’t really want to get cut anymore, and I figured it would change over time, and maybe become less annoying to me. But, by the last time I saw Dr. Futran, it was still there, and still annoying, so I asked him what would be involved in “fixing” it.

He said that it would be a simple procedure to “revise” that, that he could do in the office, and he’d be happy to do it. So we scheduled a longer appointment, and that was Sept. 7.

First, he injected my skin with a local anesthetic, one vial below the dimple, and another above. His technique betrayed that he’d been a dentist before otolaryngology, and had taken the course about tips and tricks for injecting without pain.

Half an hour later, I was lying flat in a reclined procedure chair, sterilized and draped, and he went to work with the scapel. For me the hardest part of the procedure was that lying back that way gave me a dry, ticklish spot in my throat, and I kept coughing. Well, that and the moment during prep when they’d stuck the cold and jelly-fish-like sticky grounding pad for the electro-cautery machine to my side. (Brrr.)

Being conscious for electrocautery was a new addition to my medical experiences. There is a sizzling sound, and there can be smoke and a smell. I suppose others might find it fairly disturbing, but I was amused by the idea that my belly was being arc-welded, like a piece of farm machinery out at the ranch.

Two layers of stitching followed, one deep to take the bulk of the strain, and the other to bind the top of the skin and make it heal smoothly, and I was done. Antiseptic ointment, a bit of gauze, and back in ten days to have the top stitches out. Voila!

By shortly after dinner, the local anesthetic was wearing off. Acetaminophen was able to keep the pain to a mild level, though I did get a scrip for vicodin. I also had a round of antibiotics. That night, I changed the bandage, and looked at the handiwork in the mirror. It seemed like it would heal to a short, curved, and most importantly, flat scar, not even the most dramatic on my torso, much less my whole body.

I’m pretty happy about it.

The stitches came out today. I’m posting three photos, before, with stitches, and with the stitches out. (The scar in the upper right is from surgery I had back in California, to drain fluid that was building up around my heart. In the middle photo, you can just see the long scar on my forearm from my squamous surgery. As I say, the new one is not so dramatic.)


It’s Out!

No more loose ends! The feeding tube is out.

The folks at Interventional Radiology did not pass up their last opportunity to impress me negatively. Though I showed up early for my appointment, they waited until twenty minutes after my appointment time to call my name. Or actually, “Davis Paul?” in an Asian accent, which I took as the same thing. I was ushered back into the warren of halls and rooms that makes up UW Radiology-land. Finally, I was given a gown, and left in a curtained-off area of a hallway, used as an impromptu procedure “room.”

I sat there for another 20 minutes, until someone from the MRI department came by to put a patient in that area. She was quite surprised to find me, since I apparently didn’t belong in what is supposed to be the MRI holding area. She went off to find where I belonged, then walked me there.

This turned out to be the odd nurses station-cum-curtained holding area that I recognized from previous visits. There, the several people who work out of that space managed to not bump into each other and also find me a chair, so my waiting could continue. This was after I had a conversation with them about whether or not they needed a stretcher for me to lie down on. The nurses I was dealing with seemed not to know. Since there was no stretcher in the area, and I could only imagine what a challenge finding one would pose to their 8K brains, I confidently told them that I was happy with the chair, so that they could skip looking for a stretcher, unless they would need me to be on one for the procedure. The nurse I was looking at seemed overjoyed to be spared more work, and left me alone.

After another 5 or 10 minutes, some doctor-y types showed up, and expressed minor annoyance that I was “hiding” behind the curtain and they couldn’t see me there. I said, “Hey, I just sit where they tell me.” (I wondered where they had expected me to be; it wasn’t like it was a big space, and there was someone else on the other side of the curtain, wedged between me and the nurses desk. One doctor asked me a few questions, then, after a pause to go on the other side of the curtain and help explain to the other patient there what they were about to do to her, returned, opened up the kit, and began. Extraction was dirt-simple. I was told to grit my teeth, and close my eyes, and when I said I was ready, he pulled it out. Poof. Done. (I don’t know why I needed to either grit my teeth or close my eyes, since it didn’t hurt at all, and, on the scale of gross-outs in my life, was pretty low.) I was told the hole might ooze for about a week, so I would want to keep a bandage on it. I got some gauze taped on by the nurse who’d dumped me in MRI, who’d just returned, no doubt from leaving someone else in the wrong place. He jumped to help after the doctor fumbled and got the tape stuck to his gloves. How could one fail to be impressed with such competence? Frankly, I could have taped it better myself.

So, in all, a five-minute procedure I could have done at home took an hour. One assumes there might have been complications for which it would be good to be around medical professionals, but in the event, it did seem like a huge waste of time.

Afterwards I stopped by Otolaryngology and Carol looked at my little lump. This morning it is smaller, and looks even less inflamed, so Carol decided to leave it alone, and told me to call if it starts getting worse.

So, now at last, I’m home, without something rubbery dangling from my chest. Yeah!! I’ll be interested to see how long and how much I ooze, and whether I end up with a dent at the tube site.

36 Hours and counting

It’s less than 36 hours now before my appointment to have the stomach tube pulled!

I’m excited, but I’m also a bit anxious. I don’t have very good memories of my first visit to the Interventional Radiology department, and so, while I’m confident that the extraction procedure is simple and easy, I can’t manage to convince my back-brain. That’s the part that remembers being in pain, and drugged, but not drugged enough to either stop caring about the pain, or miss the seeming disorganization and unpleasantness of the staff. It really doesn’t want to go back to that room, and it’s allied itself with the instinctive resistance one feels to having something long and snaky pulled out of one’s gut. So I am aware of some emotional “static” at the thought of going there Thursday morning.

I’m not, however, worried about being able to nourish myself after the tube is gone. In fact, tonight I had a small baked potato! I couldn’t manage the skin, but the yummy yellow inside got swallowed fine. Perhaps the butter coating helped. Afterwards, I had another bowl of the congee, or rice porridge I made the other night. It was so much like eating that, when I went later to make my IBP it felt like I was just making something to drink, and not a “meal”. Just another sign that I’m moving away from being constantly worried about feeding myself.

I’ve also made some progress with swallowing small pills, but it’s a haphazard process. I haven’t yet figured out a reliable technique. Still, the pills are getting down, if not always on the first, or first few tries.

My swallowing toward the end of last week was being bothered by a sore throat, which I connect to the development of a new abcess, approximately where I emitted a staple a while back. Over the weekend the inflammation went down, and my sore throat went away, but the lump remains, and no staple yet. I’m keeping it under observation, but it does feel just like the staple eruption, and not like any Other Thing. I’m planning on getting it checked out when I’m at the hospital.

Since Saturday I’ve been wearing yet another bit of acupuncture style in my ears. I’ve graduated from magnetic BBs to itsy-bitsy things Dr. Lu called staples. I have one in each ear, inside in a place where I can’t see them, and they are covered with an adhesive covering, so Kimberly can’t see much either. They feel like very tiny lumps smaller than the BBs, and if they are poking into my ear cartilage, it isn’t very much. I can’t feel them, and can only hope they are aligning my chi properly when I press on them while swallowing. I expect they’ll be gone after tomorrow, when I have my next acupuncture session.

I’m taking it as a sign of my further recovery that I’m actually finding a bit of interest in holiday preparations. I put up our outdoor lights, and the electric candles in the upstairs windows. Today I actually packed some packages and endured the line at the Post Office. I even was at the mall this weekend, and, while I didn’t buy any gifts, I also didn’t freak out at the crowds, the stores selling hideous junk to people intending to give it to a loved one, or the cell phone booths that seemed placed every 50 feet. I’ve even had some real ideas for what to get for people this year. And it isn’t even the 15th! (for a few more hours, anyway.)

As usual, Kimberly and I will be flying to Houston for Christmas. It will be interesting comparing this visit with our visit at Halloween. I won’t be carrying around a pump this time! I’ll be able to have something to drink on the airplane. And the tube won’t leak, because it’ll be gone!. And I won’t have to go off to hook up my bag, or figure out how to schedule tube feedings around family activities. It’ll be a lot different, and much, much nicer. Oh, and I’ll be able to use that luggage space for presents instead of pump supplies!

That’s it for now. I’ll post an update on the tube extraction on Thursday.

 

Ear BBs and capsules

Today I spoke with Carol at Dr. Futran’s office, and she is starting the process to get me an appointment for pulling the tube! The Interventional Radiology Department, the same gang of louts that installed it, has the responsibility of pulling it out. It should be sometime next week; I expect to hear tomorrow or the next day.

Meanwhile, my swallowing continues. Each day it seems to be getting a little better, so that the amount of coughing and other odd noises is reduced. I’m finding a bit easier to start up in the morning, and it seems like maybe more of my throat is getting involved in the swallowing. Yesterday I timed one of my IBPs, and it was around 18 minutes, start to finish. I’ve gotten to the point where I’m comfortable enough about my diet and my ability to swallow that I’ve actually stopped keeping a daily record of my calories. This is another part of my moving away from being a patient. Normal people don’t have intake records.

My work with Dr. Lu is progressing. I noticed a definite alteration in my state of consciousness during the appointment after my last post. I wasn’t jazzed or accelerated as I had been at Bastyr, but I definitely had a moment where it felt like something shifted, a feeling akin to when I’ve felt before as various drugs kicked in. Though I was a bit spacey, that was actually reassuring, since it made me feel like something was actually happening.

During the next appointment, I actually felt a momentary change in the way my throat felt. For reasons I don’t quite understand, my swallowing problem feels like there is a lump in my throat, on the right-hand side. While this isn’t really what you see on the fluoroscope, that’s how it has felt. On Saturday, as I was lying there, I felt the “lump” shift. It felt somewhat like it was dissolving, or melting, and shifting down, so that a part of my throat that had been blocked felt open. That feeling went away after a few moments, but it was very exciting while it lasted.

At the end of my appointment, I got homework. Dr. Lu painstakingly applied small adhesive dots carrying a tiny magnetic BB to four points on my ear. These points apparently correspond to the throat. My assignment is to periodically squeeze or tap these dots to stimulate these points, while swallowing. This is supposed to help remind my throat muscles of what they are meant to be doing. It may be actually influencing my gradual improvement, and at the very least it gives me something to make me feel like I’m working hard on getting better.

I’ve avoided further investigations into the combination of fish oil and chocolate. I’ve tried swallowing some of my pills, which has worked reasonably well, although I find crushing them still works better. Today I was adventurous and tried swallowing some of the small capsules of CoEnzyme Q-10 that I used to mix with the fish oil. I’m happy to say I got them down, but I wouldn’t say I have a practiced technique. Q-10 is a nutrient that seems to help people with heart failure, and, though optional, I find it does improve my energy levels. It’s nice to be able to take it without putting it through the tube, and without having fishy chocolate.

Another feature of my new eating regime is that I often go several hours between meals, which means I actually get hungry! Last night, I was sitting around in the evening, and I realized I was actually hungry, and I wanted something more solid than another IBP. I made myself a little rice, which I was able to swallow as well. I got the pleasure of actually chewing on it, and though it was a bit tricky, I swallowed it down. Imagine, feeling hungry, going into the kitchen and making some food, and then eating it! What an amazing thing.

Sunday update

I’m posting tonight so that everyone can see that I haven’t lost the ability to type. Kimberly is feeling exploited because she has posted the last four posts in a row. She seems to be deaf to my pointing out that she is the one who decided we had to post every day. Apparently, the option of just not posting is not acceptable, and so it’s my responsibility to go write.

I, on the other hand, don’t feel like there’s much to write about. Today is primarily notable for the fact that I consumed TWO, count ’em two, cans of spacefood, thanks to the handy dandy pump. Both were diluted with water, and the pump allowed me to adjust the flow rate so that they went in over a period of hours. Despite this, I’m still not where I want to be in terms of calories today, so I’m hooked up as I write this.

While I spent the day hooked up, Kimberly spent most of the day out in the garden. The Seattle weather-guessers were wrong again, and the expected thunderstorms failed to show. She did yeowomanly duty pulling up weeds and trimming the hedge along the front walk. During breaks in my feeding, I went out to help, pulling up dandelions and sweeping up.

Tomorrow I have another rehab appointment, earlier than I would like. I’ll have to get up early, which means I should go to sleep soon. Which may be problematic, since I’m already feeling uncomfortably full, and I have a lot more to drain down my tube tonight. Besides missing tastes and smells and the feel of solid food in my gut, I’ve gotten to the point where the thing I’m missing most about regular eating is the ability to not have to think about it very much.

Bits and pieces

Paul had another not so good day today, which he did not want to write about, so I’m putting in the obligatory post here after getting home from calling a contradance.

Paul spent much of the day working on getting in calories, and only made it to around 1700. The pump is helping, but it hasn’t solved all the problems. Paul originally ordered only a few cans of the the low-osmolality formula, so that, if it didn’t work, we wouldn’t end up with lots of it around. He has ordered more, but it hasn’t arrived yet, so he’s doing a combination of Carnation instant breakfast, boost, and spacefood until it gets here. (And, since it’s higher sodium than the other food, he won’t be able to rely on it for all of his calories anyway.)

I enjoyed calling the contradance tonight, although I was feeling rather rusty. (For a variety of reasons, including Paul’s illness, I haven’t called a dance in almost a year.) However, I had a great band playing for me (thanks Anita, David, Clyde and Eric), and everyone seemed to have a good time.

I was just getting to the denouement of the mystery I’ve been reading when I had to leave for the dance tonight. Now I’m going to go find out whodunit, and then to sleep.

Better living through chemistry

My new formula did arrive today. The first can of it went down pretty smoothly at the rate I was pumping it. Tomorrow I’ll try some more, and see what happens. There is a catch, though. It’s lower in calories than the “spacefood” formula, and relatively high in sodium. If I tried living on the new formula alone, I’d go over my daily budget for sodium intake, which would complicate my heart situation. We could probably deal with that by upping my diuretic dosage, but I’m not eager to go that way. Rather than borrow trouble, I’m going to wait to cross that bridge until I see how my gut agrees with this new formula over a longer term than one can.

Today I got a substantial amount of my calorie intake from Odwalla juices. Odwalla, a company that got started in Santa Cruz making fresh juice, now markets yummy (and pricey) refrigerated juice concoctions consisting largely of purees of things like mangoes, bananas, and oranges. I discovered last week that they seem to make my tummy very happy. I tried their “C Monster” which is high in Vitamin C last week. Today I had “B Monster” which has lots of blueberry, and Vitamin B. I also had some variety that has a bunch of soy protein in it. (It probably tastes horrible, but what do I care?) It also felt good in the belly.

Between the Odwalla juices, my previously-discovered spacefood alternatives like Carnation Instant Breakfast and Boost, the new Osmolite formula, and the pump, I got over 2000 calories today without any big pain or discomfort. Yeah! I even did 30 minutes on the treadmill. It was a successful day. The next goal is to do it again, reliably.

The Pump

I’ve started {whirr-click-click-click} using the new pump. {whirr-click-click-click} It’s quite a bit of modern technology: {whirr-click-click-click} compact, light, and portable. {whirr-click-click-click} It does allow {whirr-click-click-click} me a much greater degree {whirr-click-click-click} of control over the rate of {whirr-click-click-click} flow, which means it’s much {whirr-click-click-click} easier to take on spacefood in {whirr-click-click-click} comfort. There is an electronic keypad {whirr-click-click-click} that controls a small motor attached to {whirr-click-click-click} a wheel with arms on it. The tube from the {whirr-click-click-click} feeding bag snakes through a channel {whirr-click-click-click} on the side, where the arms {whirr-click-click-click} on the wheel can rotate {whirr-click-click-click} to pinch the tube, and slide along it for a short distance, {whirr-click-click-click} pushing the contents of the tube along.

However, the original plan of using it at a slow rate while sleeping at night, to give me a “jump-start” on calories for the day, may not be so practicable. The pump gives off a rather loud noise every couple of seconds: whirr-click-click-click. It’s not too annoying if you’re awake and doing something else, but sleeping with it at night seems like it might be a problem. I did actually nod off for a 15 minutes or so during a feeding this evening, and in the process discovered another problem. If I’m not awake, the pump will happily fill me past the point where I start to feel overfull, and nauseated. I was quite unhappy when I woke up, though I did manage to avoid the worst.

I am still awaiting my shipment of the more isotonic formula. I think it will be here tomorrow.

Sun, and a gizmo.

Despite predictions that had called for rain all weekend, the weather in Seattle today cleared, and was bright and sunny during the morris dancing performance at Folklife. I sat in the audience, mainly waiting to see how the rapper team did in their major stage set of the weekend. (There are some other non-stage performances at the festival as well.) I had the unusual Seattle experience of wishing for sunscreen. Though, truth be told, it was surgery-related. I’ve been told to make sure my graft site doesn’t get too much sun, lest it burn and stay purple forever after, and I also wanted to keep my neck scar out of the rays. I made do by draping my sweater over my shoulder.

This morning the nurse from the medical supply company came (late) to show me how to operate my feeding pump. I’d read the instruction booklet by the time she got here, and, since I am smarter than the average bear, I turned out to know more about this model of pump than she did. She apparently felt the need to make up the time not spent teaching with chatting incessantly, but finally I got her out of the house before I had to go down to the festival. (I couldn’t help but think how this woman’s salary was helping to drive up medical costs. Someone needs to do that job, but it could be so much more efficient. Sigh.)

Anyway, I did use the pump this afternoon, to administer a round of diluted spacefood without major difficulty. The major advantage was that I could carefully and consistently control the flow rate, which makes a difference. The pump also has a battery, and a nifty carrying pack, so I could haul it around with me while working on a long feeding.

But for now, it’s time for sleeping.

A little news

The pump for Paul’s tube feeding was delivered today. It will enable him to carefully regulate the rate of feedings, and to take in some calories very slowly overnight, if the wants. A home health care nurse will be coming by tomorrow to show us how to use it.

Paul ordered the new formula today. It is a low-osmolality, or near isotonic formula. Paul found a very interesting bit of information today on tube feeding formulas from – imagine that – the University of Washington Medical Center. It’s from their extensive on-line resource on nutrition for pre-term infants (who apparently sometimes need tube feeding). This is not information that we’ve received from anyone at UWMC. They say:

The osmolality of a formula has a direct influence on the gastrointestinal (GI) side effects that occur with enteral feeding. Osmolality refers to the concentration of osmotically-active particles per liter solution of formula, expressed as mOsm/L. The osmolality of a formula is affected by the concentration of amino acids, carbohydrates, and electrolytes. Formula with a higher osmolality than that of normal body fluids produces an osmotic effect in the stomach and small intestine; this hyperosmolality draws water into the GI tract to dilute the concentration of the formula.

An influx of water into the GI tract may cause diarrhea, nausea, cramping, and distention. Isotonic formulas are designed to alleviate these problems. The osmolality of full-strength isotonic formulas is similar to the osmolality of normal body fluids, approximately 300 mOsm/L.

Hmmm… the problems related to hyperosmolality sound familiar. Perhaps that’s the problem. The osmolality of the spacefood is a whopping 950, more than three times that of normal body fluids, so it could be sucking lots of water into Paul’s GI tract. Here’s hoping the new stuff, with an osmolality of 350, will work a whole lot better for Paul.