Wednesday, April 28, 2010

On Stoicism and Stomas, or, "What the Hell Happened to Alex, Anyway?"

It's been brought to my attention that I have been quite stoic about Alex's near demise, so much so that many people didn't realize just how near he was to dying. Oh, my. That must have made my last post sound like the biggest piece of self-absorbed drama. Mea culpa. Really, I'm not a drama queen. (At least, I don't *think* I am.)

Alex really did almost die. They told me every day for the better part of a month in the ICU that they couldn't guarantee he'd pull through. They couldn't promise me anything, of course, because they didn't want to get my hopes up. If I was stoic, it was only because I couldn't let myself fall apart, for his sake or for Aurora's. And while folks didn't get from my apparently calm posts during his hospitalization that he was "dying, Egypt, dying," likewise some folks don't get that he will never be the same again.

Nope, he's not still in the hospital. Yep, he's walking and talking and going to physical therapy 3 mornings a week. Yep, he can drive a car and walk a mile and dance with his wife. These are some of the things that some folks have been surprised to hear, so it sounds like some explanation is in order.

While in the hospital, Alex went through 3 abdominal surgeries. The original surgery was supposed to laparoscopically shorten his colon and reattach it. It was supposed to be no big deal; he was supposed to come home 5 days after it. But instead, he woke up the day we were supposed to bring him home with a raging fever and incredible pain. His internal sutures had blown, and he was spilling fecal matter into his abdominal cavity. It took 2 days for the doctors to diagnose that, which is the longest a person can survive that level of toxicity, and perform the 2 emergency surgeries to repair the blown sutures and clear the toxic fecal matter from his abdominal cavity. It was a miracle he made it off the table the second time. They went in the third time because they missed some.

To keep his vital signs stable while he fought the massive infection, he was on life support and anesthesia for a month and a half, and had pneumonia as a result of being on life support for so long. As a result of the septic shock, his immune system has been severely compromised. His internal organs have been weakened; he now has to take heart medication. We still don't know what other health issues may present themselves because of the massive infection and the powerful pharmaceuticals used to treat it.

In order to save his life, the surgeons had to give Alex a colostomy. This means that he has a hole called a "stoma" in his abdominal wall where one shouldn't be; a hole through which his large intestine feeds stool into a bag that is pasted to his skin.


 This is an ostomy bag. It locks onto a flange that is pasted to the skin around the stoma.
This particular style is the "Sensura 2pc midi clsd pch opq 40mm 1 1/2" grn".
Yes, all of that mumbo-jumbo means something to an ostomate (a person with an ostomy). You have to learn what, out of the thousands of options, works on your particular stoma, by trial and error.
And through that hole, his intestines could literally pop out if he were to sneeze, cough, or lift something heavy. That's called herniation. He actually has already herniated, but the intestines are "pooled up" between the abdominal wall and the fascia (I think I have that right) so that he has a lump the size of 1/2 a softball right where his stoma is. So far he doesn't have any pain from the hernia, so it isn't "strangulated" yet...but it could become so easily. And it could get bigger. If it were to strangulate and he were for some reason unable to get surgery soon enough, it would kill him.

All this means that Alex can't work in the studio, because to be a potter is to be lifting and moving heavy stuff all day long. Bags and slabs of clay, buckets of water or glaze or dry chemicals, kiln shelves, boards full of pots...Alex can't move any of those without risking further herniation. He can't get in and out of his kayak, or even get it up and down off the van. He can't wrestle with his kid and show her hockey moves. He can't lift more than a gallon of milk. He can't bend over and pick something up off the floor.

So while he's alive and he's relatively healthy, he has to second-guess or forgo a lot of his everyday activities, he can't do things he loves, and he can't make a living at his profession. He's depressed, understandably, to think that the professorship he was hoping to get (once our little one has flown the nest and we're no longer co-parenting) might be beyond his physical abilities.

I've learned more than I ever wanted to know about hospitals, surgeries, and my digestive tract. And now you have, too!  LOL. I feel like I should write a book for spouses of ostomates. (Man, there's gotta be a hilarious title in there somewhere!) People don't talk about ostomies much. Even a lot of hospital staff didn't know the basics, which made Alex's early months very challenging. Some people are embarrassed by their ostomy, but Alex isn't. His ostomy saved his life, and was a dire necessity. He has read everything he could get his hands on to learn about ostomies. He has carried it with humor and aplomb. (Ask him about the Ostomates Bag Pipe Band.)  Now that it's no longer needed, it's time to reverse the procedure and get back to as much of his normal activities as possible.

Alex goes to the Cleveland Clinic a week from today to talk to a colorectal specialist about getting his intestines reattached to his rectum, to get rid of the stoma and stop "brown bagging it" as it were. (That's another ostomy joke.) His rectum is still there, and can resume normal function if his intestines can be safely and firmly reattached. We hope there will be lots of good news from this doctor: That first of all they'll be able to do the surgery, that the chances of complications will be minimal, that they can do it soon, and that afterward his chances of herniation will be greatly reduced, enough so that he can work in clay again.

So, we've been thanking you all for your support, all the while not realizing that we hadn't given you the full picture. Now that you have it, give yourself a pat on the back for being the wonderful friends you all are. We couldn't have gotten through all of this without you.

6 comments:

  1. Great summary! Got it! You are a very good writer and really should write a book! I think that you were pretty clear about the seriousness of Alex's situation in your earlier posts - you just didn't complain, whine, blame, get dramatic or get rude. This post is a good summary that continues not to do those things. Both of you are so cool!

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  2. Wowza! I'm a nurse, so I completely understand the serious-ness of what you've been through. To have maintained your sense of humor through it all is an amazing gift. May he continue on a path toward wholeness. He is blessed to have you in his life.

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  3. Thanks, gals! The only way I know how to do this is with a sense of humor...We're going to write an ostomy joke book, I think!

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  4. You know, there are ways to market that, and you could make some money on it, I'm sure. It'd definitely be a pick me up for a very sensitive issue.

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  5. We're seriously starting to consider it, Lisa! (And maybe it can help us get out of debt!)

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  6. Nancy,
    I send all three of you happy, healthy vibes.
    I was looking through my "friends" on FB yesterday and realized I hadn't checked into what you two were up to in some time.
    As I glanced over Alex's page I didn't realize how serious this was either and his response comment thoughtfully brought that to my attention.
    Today I read a little bit of his blog and followed the link over to this entry of yours. It definitely clued me in.
    I think of you guys often and can only imagine what a lovely and interesting young lady Aurora is becoming.
    Perhaps we could stop by the studio if we take another trip east before we head off to live and teach in The Netherlands for a couple of years (or so?). We've been talking about a road trip next weekend. If it comes together, I'll see if you guys might be around for a cup of tea or just a chat.
    ~Jessica Rizor (& James--from Michigan)

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Thanks for stopping by for a chat!