Author: Suzy Taylor Oakley

Friday hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

Bruce slept almost seven hours last night! He was “in and out” during Michael Phelps’ Olympic events but managed to see him win his sixth gold. After that, he was “out” and didn’t wake up until 5 this morning.

He has gained 10 pounds since Monday. That should be “good news” but is a little worrisome (to me, anyway) because it’s so rapid. He lost 6-8 pounds last week (in about six days) and gained 10 in four days this week. Rapid weight loss and gain is hard on the ticker (and other systems). Also, a lot of the gain is in fluids (he calls himself a water balloon). But praise God he is gaining.

His blood sugar just now (11:45 a.m.) was 182. The nurse just left the room, probably to go get another insulin shot for him.

Bruce started eating solid foods at lunch Thursday and has done pretty well with it.

The surgeon visited Thursday evening (right after I went home to feed the dogs, just as I knew he would). He said he didn’t think surgery was indicated at this time but that he would see Bruce in his office after he’s discharged from the hospital. The doc can see Bruce’s butt better in his office, with the proper lights. So that’s an extra charge for an office visit because he doesn’t have a good enough light in the hospital.

The gastroenterologist hasn’t stopped by yet today, but I imagine he will start talking about sending Bruce home. My guess is that Bruce will go home Saturday.

Bruce is always very sick when he comes to the hospital, but, as is often the case when he has a roommate, the roommate is sicker. (He wrote about that in February.) And this roommate has never been hospitalized before, so it is a whole new world for Mr. G.

We have become the “experts” in how this whole thing works, although I hope we are humble enough to realize that’s not really true. We have learned a lot about how this hospital works (at least the daily care part of it, where you learn the nursing staff’s names and they learn yours, you build trust and care, you share family news, such as the announcement of the nurse’s week-old baby, whom he hates to leave every night when he comes to work — the part that makes the difference between pill-pusher/pill-taker and true caregivers and care receivers), but we know we have a lot more to learn. We have obtained a lot of medical information in these nearly 10 years since Bruce’s diagnosis, but we are not doctors, not pharmacists, not dietitians. Not medical researchers. We have daydreamed about pursuing advanced medical degrees so we can help understand and fight this horrible disease. We have seen firsthand, many times, how there are just not enough hands to take care of everyone who needs it.

But we try do our part, giving small bits of information, even comfort, to the “new guy,” who sees this all as one big mystery. We hope it helps.

As for my part, I try to remember what a comfort it is to be in the care of the One for whom none of this is a mystery.

Thursday hospital update

Suzy Taylor Oakley Crohn's disease, God, health, medical

First, let me say that my prayers go out to the family of Bill Gwatney, who was murdered yesterday at his office at the Arkansas Democratic Party headquarters in Little Rock, and to the family of Timothy Dale Johnson, the man who killed him and was shot to death by police.

As for Bruce, here are a few random pieces of information:

My husband is so in tune with his body. He knows the difference between the lipids dripping down through the IV (the fats make his bottom parts more supple and less painful when he has to visit the potty) and the bag with sugar and insulin. He gets the lipids only every two days, so since they took that off last night, he is having more pain on his bathroom trips. With the non-lipid bag, his mouth is drier and he has more pressure in his abdomen. And, even though he’s getting carbs, he’s more lethargic. He usually can tell the difference quickly in a change in medication or nutrition. His body systems are a delicate balance, and it is amazing what he knows about it. Now, if only he could figure out the cure for Crohn’s disease.

He had a really low blood-sugar reading yesterday, but we are now convinced the test was done incorrectly. The pharmacist said Bruce would have been trembling and disoriented if the reading truly had been 56, yet he didn’t feel anything out of the ordinary.

The lowest the blood sugar has been this week on the IV fluids is 142. The high was 232 around 6 p.m. Wednesday. He has had several insulin shots this week. This is a new experience for us. He hasn’t had these issues on any previous hospitalization.

This is Bruce’s sixth hospitalization since he was diagnosed with Crohn’s disease in December 1998. It’s the fourth hospitalization since May 2007.

Last night, around the time of the staff’s shift change, we heard a bit of drama two doors down. First there was unintelligible yelling, followed by, “Security! Security!” and more yelling. I peeked out to see several nurses and a couple of visitors outside the room. Turns out, one patient was trying to sleep, his roommate’s visitors had had too much to drink and were being too loud, the sleepy patient asked them politely, then later a little more forcefully, to be quiet, and it escalated from there. They had to move one of the patients to a different room.

We hear and see a lot of funny and strange things here at Springhill. I could tell you some hospital tales. I’m debating about one in particular from last summer’s hospital stay. Not sure I can tell it in polite company, especially if you’re reading this while eating breakfast.

I’ll report more later. The surgeon is supposed to visit today, but the gastroenterologist doesn’t think he’ll want to cut on Bruce’s butt this time (he did in December). If no surgery is ordered, Bruce will probably go home Friday or Saturday loaded up with prescriptions for antibiotics and steroids.

Keep prayin’.

Wednesday morning hospital update

Suzy Taylor Oakley Crohn's disease, health, medical

Bruce had a difficult night.

They took him downstairs for the CT scan between 7 and 7:30 Tuesday evening. That went OK, but he had some “lurching” in his torso, probably from the solution he drank, while they did part of the scan. Lurching is my word for it after he showed me what happened (I don’t want to call it a convulsion, although it certainly looked like it). He would probably have a more eloquent description. He usually does.

At 8:45 p.m. he asked for pain medication (unusual for him). He immediately started feeling sleepy but was still awake when I left an hour later. The nurse was in and out a lot during that hour, changing his feed bag, answering some of my concerns about the spikes in his blood sugar, taking his vitals, etc.

This morning he told me the pain shot had made him feel strange. He also had to have nausea medication, which made him feel strange in a different way. He didn’t sleep much and looks and sounds weak this morning.

On a positive note, he ate most of his breakfast (oatmeal, a cherry ice cup and a small carton of 2 percent milk, which he said tasted strange). He didn’t drink his apple juice, but the nurse said she was impressed that he ate as much as he did. He has gained 3 pounds since Monday (up to 133 today), but I think a lot of it is the fluids coursing through him. He usually gains weight in the hospital but starts losing it again when we go home.

He said his tongue is furrier today, but in his opinion when they start getting rid of the fungus in his mouth, his abdominal symptoms get worse. He thinks the fungus wards off bacteria elsewhere in his body.

The human body is a strange thing, and Crohn’s disease is a mysterious disease.

The pharmacist just came in and said he’s adding insulin to the next feed bag and will adjust a couple of other things. The pharmacists have been very attentive, and I appreciate their diligence.

Keep prayin’.

Tuesday hospital update

Suzy Taylor Oakley Crohn's disease, dogs, friends, God, health, inspiration, medical

The anticipated CT scan hasn’t happened yet. In fact, the doc hasn’t been in yet to order it (it’s nearly 11:30 a.m.).

With the big bag of “food” on his IV pole, Bruce’s blood sugar shot up last night and they had to give him insulin. The second time they checked it, it was OK, but the pharmacist was in a few minutes ago and said that if it shoots up again, they can inject the insulin directly into the bag. Oy.

What’s worse (in my opinion) is the pain when he goes to the bathroom. With all the undescribable things going on down there, he said that when waste tunnels through the fistula (yes, he has another fistula), it feels like acid being poured on his skin. Down there. The nurse was telling us about her hemorrhoid surgery several years ago and commented, “Can you imagine how painful it is to have a shot in your rectum?” And Bruce replied, “As a matter of fact, I can.” (Several times a day, he can.)

Yes, it is extremely painful. And it’s really scary. He also thinks another abscess has formed, and that’s not the same as a fistula. Different problems, both difficult to treat. And he has ulcers in his mouth, not to mention a yeast infection (also in his mouth — thick, furry coating on his tongue, causing him to eat less) brought on by antibiotics used to treat infections. Some of the medicines he takes are ones that counteract other ones. All a big fat hairy scary mess.

So please keeping lifting him up in prayer. We thank you for all the prayers you’ve already said for us.

On a side note, Bruce wanted me to say something we’ve been wanting to tell people for several months. We have thanked you face to face or by proxy at times when you’ve given us food, money, visits, lawn mowing, TLC to our dogs (Mike Tyler especially loved on our furbabies during his visits), etc. And we’ve e-mailed you in groups or individually to say thanks. But we haven’t done what Miss Manners would have us do, and that’s send actual thank-you notes — through the mail, not electronically.

It took us a long time just to get most of the notes written, but we still haven’t gotten to the next step and addressed the envelopes. They’re sitting on the table downstairs. It’s not just a matter of having the time to do it, it’s that anything nowadays is an emotional (and physical) drain. Both of us have fought low-grade depression, mental and physical exhaustion and the accompanying inertia, and have put off way too many things in the past several months, although I suppose that’s a subject for a post on another day.

But to those of you who have helped, in ways big and small, know that your thank-you has been expressed in our hearts — even written on a card — and someday we might actually mail it.

Suzy and Bruce.

Hospital update

Suzy Taylor Oakley Crohn's disease, family, health, medical

We’ve checked in at Springhill, and Bruce is downstairs having a central line put in. They’ll give him his meds and nutrition through a port in his chest instead of his arms. He usually perks up within two hours after he starts getting IV fluids, so maybe he will feel better before bedtime. His weight today is 130 (he’s 6 feet tall), so that’s about an 8-pound loss in less than a week. But not as bad as the low of 118 last summer.

Keep saying prayers. I’m doing my work (and this post) from the hospital this week and can receive e-mails, so feel free to get in touch. He welcomes visitors and calls.

Happy birthday, Dad, Part 2

Suzy Taylor Oakley family

Last night when I posted my pictorial tribute to Dad, I couldn’t find my favorite picture. While I was at work today, Bruce found it for me, so I’ve added it and another below. If you read the post before 4:30 p.m. Central time today, you’ll want to see the two new pictures — one of my parents and brother when he was a baby, and one of Dad and me in his recliner when I was about 5. I hope you enjoy these memories at least half as much as I do.

Happy birthday, Dad

Suzy Taylor Oakley dogs, family, inspiration, nature, work
Bennie Lee Taylor was born July 11, 1938, in Izard County, Arkansas, the second of four children born to Joseph Benjamin and Tressie Lee Hinson Taylor. He died Dec. 23, 1997.
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He would have been 70 years old today.
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I had in mind to write a long, glowing tribute to my dad, but time (and my eyesight) has gotten away from me today. So I’m going to try to capture some of his life in pictures and not write all the things that are in my heart (it would take too long this evening).

First up, some photos from when he was a boy. (Descriptions below.)

Dad as a boy with family, 1930s and 1940s.
Dad as a boy with family, 1930s and 1940s.

In the photo at top left, he’s the baby, with his mother and his brother Tom. Top right, he’s the boy on the left. That’s his mom behind him; the other woman is one of Grandma’s three sisters, Retha. In the middle is dad’s sister Joan (pronounced JoAnn), and on the right is brother Tom. In this photo, it seems Grandma is pregnant with Uncle Carlos. Below left is Tom, Joan and Dad. In the last photo, below right, is Grandma, Aunt Ednora (another sister), Uncle Tom, Aunt Joan and Dad. (And, gosh, after staring at this picture for hours, I just noticed two babies in the arms of their mothers. I was so focused on Dad and his siblings! Grandma is probably holding Uncle Carlos, and Aunt Ednora — or “Aunt Gobb” — is probably holding her first born, Janice.) I assume all of these photos were taken in Izard County.

The next phase of his life shown here is high school. Here’s his senior portrait. Wasn’t he handsome?

Dad senior portrait
Dad senior portrait
Dad was VP of his and Mom's senior class

In this photo of the Class of 1957, Cave City, Arkansas, he’s in the bottom row, third from the left (he was class vice president). My mother (with the same last name, coincidentally — they weren’t married yet) is the first person in the second row (Dorothy Taylor). They got married on Nov. 7, 1958, and she didn’t even have to change her name.

Dad loved his family, and here are a couple of photos of us with him.

Mom, Dad and J.T., Christmas 1960

First is Mom and Dad with J.T. on my big brother’s first Christmas, 1960. J.T. would have been just under 3 months old. And the next one is quite possibly my all-time-favorite picture, because …

Dad and me in his favorite chair
Dad and me in his favorite chair

… it reminds me of one of my favorite memories of Dad. I inherited my chocoholism from him, and when I was little (OK, even when I was big), Mom would serve us chocolate ice cream. I would hurry and gobble up mine out of my little blue plastic bowl, then climb into Dad’s chair with him and, ever the little helper, join him in finishing his ice cream. We don’t have photo evidence of this nightly ritual, but this is the place where it all happened.

A big part of Dad’s life was cars. He was a mechanic but also knew how to restore classic cars inside and out.

The photo above is dated June 1963 (when I was 6 to 7 months old), but we have lots of photos with dad and cars. I simply didn’t have time to go through all of them last weekend when we were at Mom’s. This photo was probably taken in Coalinga, California, where we lived then.

As for the two photos above, Dad built this car from a kit just a few months before he died. I’m going out on a limb here, because it’s a little too late too call my mom tonight (and even too late to call Uncle Carlos in California), but I think it’s a 1929 Mercedes Gazelle. I had it in my head that it was a 1937, but I found a 1929 one online that looks just like this one, and 1929 now rings a certain bell in my head. I typically wouldn’t publish something until I was sure, but I want to post this on his birthday. I will straighten out the details as soon as I can. (You would think that after watching Dad and Uncle Carlos work on so many cars in my lifetime I would be better at identifying them.)

I probably should have showed you the shop first. He built it (with the help of older brother Tom — and me, on one of my trips home from California) specifically for working on cars and puttering on his many projects. He had “retired” in his 50s because of a 30-year-old injury and heart problems, but he certainly couldn’t sit idle inside the house. As I’ve mentioned in previous posts, he loved to be outdoors when he could. The shop was out back behind our house in Batesville. Dad could fix anything — from a broken record player to an old lamp. Besides mechanical stuff, he could do carpentry and electrical. A Renaissance man. His mind never seemed to stop, and he could answer almost any question I had for him, whether it pertained to politics, the economy, agriculture, the Bible, sports, physics or just about any subject you could name (except maybe pop culture). Most of it was self-taught.

These three pictures show three phases of construction of Dad’s shop:

Barely started …

… well under way …

.. and complete.

I mentioned in a previous post all the work Dad put into the piece of land where we lived. Below is a segment of it. This was the best picture I could come up with in a short time.

I can’t close this without mentioning Dad and our dogs.

In the photo above is Dad with my dog Mesa (a mix of four breeds) and his dog Chance, a miniature Pinscher (a larger version of our Pepper). Chance, named by my nieces after some cartoon character in 1994, was Dad’s little buddy (mine, too). That photo was taken by Barney Sellers in Barney’s yard across from my parents’ house in Batesville. The bottom photo is of Dad and Chance on the deck that he built in the 1970s. My sweet Mesa and little buddy Chance have been gone from us for years now, but you know you will be reading more about them whenever I write my dog tribute post.

This last picture was taken on the deck of my Uncle Tom and Aunt Willa’s house in Batesville when Uncle Carlos and Aunt Judy were visiting from California. (I don’t think I’ve ever mentioned it, but Uncle Tom was a carpenter. Of course he built the deck).

Front row: Ben Taylor, Bruce Oakley, Suzy Taylor. Back: Tom Taylor, Dorothy Taylor, Carlos Taylor, Debbie (?), Willa Taylor and Pam Taylor. Not pictured: Photographer Judy Taylor.

The photo was taken on Oct. 4, 1997, the day Bruce and I put our wedding rings on layaway, and less than three months before Dad died.

For now, this is all I can share in pictures, although the memories of my dad are still fresh. For those of you who didn’t know him, I know you would have liked him, and he probably would have liked you.

He was my hero.

An elegy for copy editors

Suzy Taylor Oakley reading, work

I was born to be a copy editor, and copy editing is what I’ve done most of my life, professional and non.

I still do it in my job now, with about half a dozen other jobs thrown on top.

Here is a tribute from The New York Times to those of my dying breed. It explains pretty succinctly what we do.

I agree with all but the last line: “If newspaper copy editors vanish from the earth, no one is going to notice.”

On the contrary, readers notice all the time, and are not hesitant to point out mistakes. Copy editors are seldom praised for their good work, for their good work makes them invisible. But they are often condemned for letting someone else’s errors through or when they make one of their own.

Thanks to NYT writer Lawrence Downes for this tribute.