Peggy, the PEG Tube, part i

It’s frustrating, this not being able to find the precise word. Often I feel driven to reduce what we experience, feel, endure, achieve to a single word, as if its discovery will present a magical incantation, a kind of Abracadabra! for solving for helplessness. It’s been a difficult month and a half since I last wrote, friends. We arrived at milestones unexpectedly, or at least that’s how they felt to me. I know David would love to be able to share with you what they felt like for him, but it’s gotten really difficult. And so onto the essentials . . .

In late July, on a Monday morning, we drove into the city to begin what we think was a week of what might be called Comprehensive Care; we’re not sure. It’s a strange way of phrasing it, I know, but it’s another example of not having the language to tell you exactly what took place. On the outset, David spent a week at the Seattle VA hospital in order to be evaluated – to get a kind of base-line understanding for where he was in terms of progression. It seemed a bit late to me if they wanted an accurate image of progression, but whatever. Everything seems a bit late; no one seems to approach this by matching the sense of urgency that accompanies me at all times. For everyone else, the world moves at the same rate of spin. For me, (and maybe for David, I’m unsure) we’ve escaped the gravitational pull of the sun and are careening into open space, approaching the edge of Laniakea. Our observable universe is reaching its limits, and after that it’s all unknown. For your reference, here’s our approximate location:

In the void known as the VA health system, there were visits from the same type of therapists we’ve been speaking with all along: Speech, Physical, Occupational (and to that end, what ever happened with the Recreational Therapist who was going to get David a foot peddle fishing kayak?! Like a lot of ideas and suggestions, opportunities really, she’s disappeared.); a whole new crew to get to know, bond with. And you’ve no choice but to bond with these people because they are the first point of care for what you treasure most. Not that there aren’t those special souls for whom bonding with a stranger is second nature. (Here I’m thinking of Dee, the nurse who grabbed me and pulled me in close when I stepped out of David’s room for a private cry. She whispered a secret in my ear, letting me in on a history bonding us. I’ll remember forever how strong her embrace was, how certain, without any ounce of hesitation.)

For David, that week was a lot of sitting around; a lot of wasted time when he could have been working or at least at home in his own chair and bed. What a gift then (sarcasm), that when I brought him home a week and a day later, it was with a fungal rash from inertia and profuse sweating, a weakness from inactivity (and here I have an observation of contradiction which I’ll get to in a moment), and ta-dah!!!!, a brand new Percutaneous Endoscopic Gastrostomy, a.k.a. Peggy the PEG tube, i.e. a feeding tube. It happened on a Thursday afternoon. It was a threshold that many ALS patients refuse. But David walked through it with the mind of doing all he could to stay on the planet for as long as he could. Peggy not only feeds his body, she feeds his soul (and mine). You can say she’s a motherly sort. (Here’s a generic photo of what a Peg tube can look like.)

Without any Pollyanna-speak, here are the ins and outs for the care and feeding of Peggy (and if you’re squeamish about these sorts of things, feel free to skip two paragraphs down). Internally, the tube enters David’s stomach, going through skin and muscle. Just inside the stomach wall, a balloon holds it in place. All of the action then happens on the outside. I’m tempted to show you a photo of David’s Peggy, but I’ll spare you. Besides, he had Hungarian Goulash last week and the Paprika has given the tube a lovely saffron glow. But here’s an illustration for those who are curious:

Anyway, three times a day, David gets flushed thusly: I remove the medical tape and gauze pad covering the disk that provides stability to the 8 inch tube hanging from his belly. I clean his skin under said disk with sterile water generously supplied by the VA, and replace that old gauze with new (and David’s really hairy, so I’ve learned we’ll have to keep his belly shaved if the tape is to keep sticking). Then comes the “fun” part. I open one of the ports and inject 60 CCs of the same sterile water into his gut, and close up the port. Interesting things can happen. For instance, sometimes, David spills his guts. 😉 Meaning, sometimes oxygen pushes fluid (uh . . . it’s stomach stuff) out before I’ve been able to screw on the syringe. Oh well. You get used to it; it’s the body and we’d all be doing the same thing in the same position. Some of you may wonder: Can it pop out? Yes, and we want to avoid that at all costs. But it can move around and in those cases, today for example, I will have to, as his nurse Kim told me, “push it back in.” Great! I’ll get right on that, said with the most deadpan voice I can conjure. But aside from anomalies like this, I then just gather up all the debris of Peggy, and she creates a lot. Latex, plastic, paper, cotton, wood, etc. As I’ve said to David, “Dude, you’re an environmental moral-free zone.” It’s astounding. When you produce this much non-recyclable waste you have no option but to understand how desperate we should be to revolutionize the way we care for those who need it. Warning, environmental soapbox alert: Care for ourselves and care for planet must be regarded as one and the same. When we are doing one without the other, both are ultimately uncared for.

More, there is another side to the mechanics I’ve boringly described above, however. Sometimes, many times, an overwhelming sense of overwhelm stands right next to me as I go through the motions. I’m not a nurse–never wanted to be a nurse or a doctor; yet I’ve had no choice but to overcome any squeamishness of my own because David needs care and that is that. The flushing is simple, really. The stomach isn’t a sterile environment so overall, I don’t really have to be as meticulous as I would if it were an intravenous port. But still. I have to handle this tube that connects the outside world to his inner body. I will my hands to not shake. I will my breath to be even. I will my demeanor to be confident and calm while I’m screaming on the inside with fear that I’ll somehow hurt him, or that I won’t keep it clean enough, missing some invisible microbe that will cause him harm. On the outside, we make jokes of seeing bits of meals and whatnot, but inside, I’m wordless. Inside, there’s the felt sense of the dictum: Do no harm!!!!

For now, Peggy is a water fountain. She keeps him hydrated and water keeps stomach acid from crystallizing in the tube so that if or when he needs the nutritional supplements or pureed meals, the tube will pass those through easily. So far, David still eats normal meals, but he has added daily multiple bottles of Ensure to keep up his caloric intake and keep weight on. Peggy’s future is our future as well, so they’re both on my radar. It’s almost a given that she’ll be called to action into the battle of nutrition. In all truth, he’s still losing weight and there’s nothing we can do to stop it. All the Dairy Queen in the world won’t keep him from shrinking but we’re relying on Peggy to see him through.

Which brings me to that contradiction I noted above. There is a sweet spot between the conservation and expenditure of energy with regard to ALS. In the hospital, they were hyper-concerned with conservation which lead to David sitting around a lot, whereas at home, he’s on the move (relatively speaking, of course). Whether it’s using his peddle machine, or just walking around, he’s careful to keep his joints lubricated and flexible. In these terms, that hospital stay set him back and he’s lost some strength in mobility. On the other hand, exercise means the burning of fat and muscle, and David cant afford the loss of either. But this is the ALS fight: a continual argument of balance and equilibrium against entropy. As long as I’ve known David, he’s never been one for equilibrium: he’s lived full tilt, seemingly in the extremes and this we have in common. Learning a new lexicon of the mid-point, that paradoxical stillness of the object in motion is . . . well, that’s for Part II, the ineffable language of coming to terms.

But before I wax philosophical in the next day or two, here’s some other things that happened or are happening: We got a blind GSD! Yes, blind. Her name is Bailey and here she is (pic captured in real time):

I’ll talk more about her in the future. More, we met with the most wonderful contractor, Neil Green, who is stewarding us through home modifications via a generous grant from the VA. More on that later, too. As always, more technology is on the horizon from the VA, and David will be getting his Tobii, an eye-scanning computer that will hopefully allow him more creative freedom and book writing (!!).

The temperatures are cooling here in Washington. Autumn came apple-crisp scenting along last week at a moment while I was creating a little seating area in what David likes to call one of the many “scenes” of our garden (which he’ll be able to enjoy once he gets his new ATV power chair! (And I’m certain that’ll warrant a post all on its own.)

Anyway, placing the heavy capstone on the two pillars of our new bench, I thought I detected a shift, a slight change in the aura of this place. The moment little Pan was set down, it arrived: Fall!! And finally, with Fall comes something we’re so looking forward to: a visit from David’s sister Valerie, her wife Lola and their aunt Beth. So here’s to September and October, personally my favorite months, and all the enchantment they may bring.

to be continued in Part II . . .