Overdue update on Sam

Sam and two good friends from school who came over for New Years

I apologize for it taking so long to write an update on Sam. If you read my last post (January 1^st) then I’m sure you understand that we’ve been quite busy here. Before I go further I want to offer my sincere thanks to those folks who replied to my last post. I sat down this morning (Sunday morning) and started to reply to each one separately, but in the interest of time I thought I quick update might be a more efficient way to go—free time is at a real premium right now. Again, I thank each of you for showing me that you care with your sincere comments, and please know that I’ll get over to your blogs just as soon as I can!

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Here’s where things are regarding Sam. I’ll talk about the good news first.

Mobility and energy-wise, he’s doing pretty darn well. Sam is moving about the house great and not complaining of any back pain at all—in fact, it’s been weeks since we’ve felt we should offer him pain medication. His energy level is about what you’d expect. Since leaving the hospital in late December he’s only been out of the house five times and each time he starts out with lots of energy then tires quickly after walking any distance at all—but again, no complaints of back pain in weeks. We expect his energy-level will increase with time and a return to normal day-to-day routine. Our hope was that he would return to school on February 11^th (he’s attends an 18-21 year-old program through the local school district) but that plan may have to be altered. . . .

Now the bad news.

Although Sam’s back appears to be healing more-or-less on target, the bowel and bladder issues that were brought on by the disc problem are not. The catheter has been out for a while now and all concerned believed his ability to void was quickly returning to normal . . . but urology tests show it is not. Recent imaging shows that Sam is not emptying anywhere close to completely and at the same time it appears—sensation-wise—that he has zero feeling of being very, very full of urine. Yeah, a backup of urine is not a good thing and can’t be tolerated for very long at all. And although we’ve worked diligently over the past few weeks to help Sam relieve his serious bowel backup, a comparison of recent imaging to that of December’s x-rays show that precious little has been accomplished with “moving things along.”

Obviously we need to resolve the bowel and bladder issues as soon as possible: very bad things happen if you can’t dispose of waste. We also need to feel as confident as possible that Sam can handle restroom issues on his own before returning to school; we’re not very confident of this right now. We want the February 11^th return to school to happen, but it may have to be postponed.

As of this moment all we can do is to observe Sam’s behavior, keep in close contact with his physicians (not the doctors he had prior to the correct diagnosis), cross our fingers and say a lot of prayers, and hope time and medication will do something positive.

. . . but wait, there’s more!

Based on what we heard during Sam’s stay in the hospital, Patty and I were under the impression that her employer would be supportive of the time she would need to take off work to care for Sam (the best estimate was approximately six weeks). To our very great surprise, Patty’s employer decided not to be supportive and told her to report to work by a specific date if she wished to keep her job. Patty, putting her child’s needs first, was unable to do that. Her employer of six years terminated her in mid-January. [Note: Patty did not qualify for FMLA because she was not a fulltime employee.]

Long story short, there’s been a lot going on in our household. I’ll post as time permits—please be patient with me if you reply I don’t get back with you quickly.

Feeling better; we’re hoping for the best!

An uncertain future

Something bad happened recently. It began slow then picked up steam over the course of a month or so, and climaxed in emergency surgery. We’re not out of the woods yet . . . not by a long shot.

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Approximately four to five weeks ago, Sam began complaining that his back was “cracking” and this made his “bottom” hurt. We asked the questions one would ask under the circumstances: “Does your tummy hurt? Are you having trouble going to the bathroom? Did you fall—or sit down too hard?” The answer to all our questions was, no.

Over time Sam’s complaints extended to the back of his right thigh. Again, we didn’t know what this meant or what to do about it. He didn’t seem in distress and his complaints weren’t constant. We took a guess that since Sam is extremely flat-footed and his gait is a little “different” that perhaps we were heading towards hip issues.

As the days went on Patty and I noticed that Sam was very sore after getting up first thing in the morning, or after rising from a nap. As with the previous complaints, the discomfort eased after time and getting up moving around a bit. We decided at this point (it was a weekend) to take him to Urgent Care and have them take a look—we assumed they’d take an x-ray.

The Urgent Care folks took a look at him and didn’t feel and x-ray was necessary. They decided that he had sciatica and prescribed a muscle relaxer and an anti-inflammatory. He went home.

After sleeping through the next couple of days—but getting little pain relief—we headed out to see Sam’s primary care physician.

The primary care doctor—a trusted physician who’s known Sam for many years—examined him and tended to agree with the Urgent care folks’ diagnosis of sciatica. He told my wife and I to keep Sam on the same meds (a lower dose of the muscle relaxer was recommended to avoid excessive sleepiness) and get him started on physical therapy as soon as possible. Sam’s doctor didn’t see a reason to do any imaging at the time. Sam went home.

Before we could get him an appointment with a physical therapist, Sam’s pain became much more severe and had moved down his leg to include his right calf and foot. We took him to the emergency room of a nearby children’s’ hospital where we asked for help, and an MRI.

The ER folks agreed Sam was in a lot of pain and discomfort, but didn’t see imaging as being warranted—they specifically told us they didn’t do MRIs directly from and ER visit unless it was an obvious emergency. After some prodding they agreed to do an x-ray. Surprise, the imaging showed issues.

The x-ray they did showed two things: 1) Scoliosis was present in the region were it could impact the sciatic nerve; 2) Sam was extremely “backed-up” (constipation) and the waste involved was solid enough that it showed on film.

The ER folks at the children’s hospital emphasized the need for physical therapy—for what they believed to be sciatica—and diet changes to help alleviate the constipation. Once again, he went home.

Two days later, before we could get into see a physical therapist, Sam awoke in such pain that he was unable to get out of bed. I dressed him in bed as he was unable to sit up then called Patty at work (she had to work that day to avoid losing holiday pay). She came home and we called for an ambulance.

We had Sam taken to a different emergency room. (We’re now on our fourth healthcare provider.) We showed the physician on staff copies of the x-rays that had been taken at the other ER. The doctor, a very nice guy, didn’t appear to be real sure what to do next. He did give Sam a shot of some serious painkiller and that dampened things down a bit.

After the drug kicked in, the ER doc and I made an attempt (this was the doctor’s idea—part of the diagnostic process) at helping get Sam to his feet and to see if he could take a step or two. We stood Sam up and, despite the painkiller, he was unable to bear his own weight. Sam literally screamed bloody murder. Finally, with reluctance on the part of the ER doc, an MRI of Sam’s back was ordered. [Note: throughout this entire process Patty and/or I had told all the various healthcare providers that Sam tolerates MRIs very well (he’s had several of his brain) if one needed to be done—cooperation wasn’t an issue.]

The MRI showed Sam had a very badly herniated disc in his lower back. He was promptly admitted to the hospital and a neurosurgeon was called in. (We’re late in the day at this point in time.)

The neurosurgeon arrived the next day and had booked an operating room before he even had our permission to proceed: he felt the situation was that bad. A 3 ½ hour surgery followed.

Sam came though the surgery fine, but it was clear over the next few days that there were complications. The rather lengthy process of getting an accurate diagnosis—which allowed a lot of time for nerves to be badly smashed—and the necessary surgery had left Sam with an inability to control his bladder and bowels. We left the hospital after six days with a catheter inserted, a list of appointments and instructions, and a lot of “we’ll wait and see what happens over time.”

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Sam has autism. He has limited language to express himself. The way he perceives the world, sensory-wise, is different than most folks. My wife and I feel that all the healthcare providers involved should have taken these things into consideration and at least one of them should have gone ahead and taken the next [more expensive] diagnostic step—ordering an MRI—without practically being begged to.

Patty and I have no idea what caused Sam’s back issue. The neurosurgeon who operated on Sam told us that it’s often that case that you don’t know what happened. He did say that it appeared to him that the problem had been brewing for some time.

Sam spent his Christmas in the hospital, but he’s home now and we are so very thankful for that.

As the New Year begins, we face a lot of uncertainties. . . .

Well, I seem to have drifted a bit off course. . . .

Let’s chat about the past few weeks.

We keep having health scares with my wife: some are resolved, some yet to be. After an ER visit for severe pain a few weeks ago, we learned that Patty had masses and swelling where she shouldn’t have. Imaging and a biopsy were done, adjustments in diet were made, and all appears well for now . . . though we do have some things to watch over time.

Then . . . then . . . Patty received a letter in the mail informing her that (a while back) she HAD been administered a medication which had originated in the New England Compounding Center: the place responsible for the recent meningitis outbreak. I’m not going to get too far into all that right now, as we WILL be talking to an attorney ASAP.

Sam’s doing extraordinarily well! Things are going absolutely great with school and he’s been able to spend a lot of time with a young lady he has a crush on. All is good with him!

Me? I’ve been unable to shake some respiratory evil that has plagued me for weeks now. I’m having trouble getting enough wind and I’ve had a cough that just won’t go away. This has reduced my energy level to something resembling that of a three-toed sloth. As I’m typing this post I am quite sick: bone-aches; nose, throat, and chest issues. Yes, I have been to a doctor about it, and yes, I need to go back—don’t nag!

As I’d mentioned previously, the national election had been worrying the living-crap out of me. Well, it’s over now and the guy I wanted to win did—big-time! But even though I got the result I wanted, there’s still the budget battle for me to fret about. As I’ve said before it pretty much didn’t matter which candidate was elected, federal funding for my job is on the line—and there’s simply not a darn thing I can do about it. If I do end up getting the axe because we spent, lent, and bombed-away money like drunken sailors during the Bush years, I’d rather get my pink slip from the man I helped elect than be put out of work by the likes of Ryan/Romney. Time will tell on this front. When you listen to the news and hear folks talking about “big cuts to discretionary spending,” please think of me.

Recently we became a one-car family, and making that work has occupied a lot of our time and energy as well. My wife’s van shot craps a while back and we had it towed off. Then my Mercury’s power steering pump decided it would be fun to explode all over the engine. (I’ll have to admit that driving through McDonalds with all that acrid smoke coming out of the hood was kinda cool!) So my Merc, and the—seriously—$5, 000 worth of other stuff that’s wrong with it, are parked in our driveway awaiting final disposal—and hopefully, its replacement.

Anyway . . . things are obviously busy here and my energy level is less than optimum, so please have patience with my slower than average posts and responses. I’ll leave you for now with a shot of the car we bought for Patty; (please ignore the “scenic” background) pretty cool, huh?

Patty’s car

 

 

Sunday Spin #45, Bob Seger & the Silver Bullet Band, “U.M.C (Upper Middle Class)”

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Sunday Spin is a weekly feature of Coalescence. I use it to highlight some of my favorite music and talk a little about what the song means in the context of my life. Comments are highly encouraged! 

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Released in 1976, here’s this Sunday’s Spin! 

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Yogi Berra said it best, “It’s deju vu all over again.”  

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Yesterday we—Patty, Sam, and I—headed over to Independence, MO to run part of Sam’s Halloween routine. Yesterday’s portion of the annual Halloween routine involves a trip to “the pumpkin patch” (in actuality a HyVee grocery store parking lot) and lunch at a nearby pizza joint: Fun House.

Fun House is a time capsule. The décor, furniture, and menu have remained unchanged since the ‘70s or ‘80s—perhaps much longer. I used to go there with friends for Taco nights in the early ‘80s and it looked exactly the same. My wife, Patty, has been going there longer than that (most of her family worked there as teenagers) and she vows that the place is unchanged. There are—I kid you not—hand-painted pictures of dune buggies on the walls of Fun House! (I’m betting most of you will have to Google, “Dune Buggy,” to figure out what I’m talking about.)

Halfway through our meal the Fun House jukebox keyed up something long-lost, yet very familiar: Bob Seger & the Silver Bullet Band’s, “U.M.C. (Upper Middle Class)” Man, I just could not believe that a song from Seger’s 1976, “Live Bullet,” album was still on somebody’s jukebox! Incredible!

Before you ask: yes, the jukebox is newer and plays CDs instead of records, but that’s not the point here. The point is that some things never change and music and location can transport you right back to another time—speaking of how things don’t change, have a look at the lyrics to the song. Compare the words of 1976 to ones that might be said today: in 2012.

I wanna be a lawyer
Doctor or professor
A member of the UMC

I want an air conditioner
Cottage on the river
And all the money I can see

I wanna drive a Lincoln
Spend my evenings drinking
The very best burgandy

I want a yacht for sailing
Private eye for tailing
My wife if She’s a bit too free

I’ve been told ever since a boy
that’s what one aught to be
A part of the UMC

I want a pool to swim in
Fancy suits to dress in
Some stock in GM and GE

An office in the city
Secretary pretty
Who’ll take dictation on my knee

I want a paid vacation
Don’t want to have to ration
A thing with anyone but me

And if there’s war or famine
Promise I’ll examine
The details if they’re on TV

I’ll pretend to be liberal but I’ll still support the GOP,
As part of the UMC

I wanna be a lawyer
Doctor or professor
A member of the UMC

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What do you think? Are you a Seger fan? Do you remember “Live Bullet?” Notice any similarities in thought—then to now?  

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So what-in-the-heck ever happened to George?

Please stand by, regularly scheduled programming will resume shortly.

I’m still here guys—no plans to go away! Due to a variety of reasons I haven’t been very active on the web as of late.

• Patty and I have both had health issues recently; Patty’s of much greater concern than mine. (I’ll elaborate when we know more.)
• We’re a one-computer family (yes, they do exist) and Sam’s been ultra-active on ours. Our son’s been typing and printing lists and schedules by the hundreds—I am not kidding—up until the last few days he was going through 500 sheets of copy paper a week.
• In addition to the time spent on the computer—which is something that’s very satisfying to him—Sam’s had a LOT of opportunity for social/peer interaction over the last few weeks. This has kept us all busy in a much desired way!
• The three of us recently made a long-overdue road trip to see my mother. There’s some not-so-good stuff going on with her health and we’re going to need to keep a closer eye on her—despite the distance and Sam’s reluctance to go there unless the trip is part of a well-established routine.
• I’ve been spending a ton of time watching and fretting over politics on TV. For those unfamiliar with me and my family, we’re proud 47%ers! Because of his disabilities, Sam benefits from/depends on Medicaid, SSI, and other government-sponsored social programs. My employment (a grant position) is totally dependent on federal funds: funds which are NOT in Ryan’s budget and WILL be part of the “automatic spending cuts”—cuts which may be a fact of life despite the winner(s) next month. My wife works in an elementary school primarily populated by children from low-income families and/or undocumented parents. She sees—firsthand—the necessity of government-sponsored social programs. So yes, I’ve been fretting—expect last Thursday when I was cheering like a freaking madman for Joe Biden!

Long story short, I apologize for my recent few-and-far-between posts, and the fact that I’ve been slow to read and comment on some of yours as well. I’m still around—just been very busy.

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IMAGE CREDIT FOR TEST PATTERN: http://wgon-tv.com/

“Headlights” and tail lights

Sam and I went to an outdoor car show today. What makes that newsworthy is the fact that it was his idea!

A couple of weeks back Sam came home from school with a flier which announced a September 29^th car show. Sam showed it to Patty and I told us he’d like to go. We agreed to this in under a second: the event was way out of the normal weekend routine for Sam (he has autism) and would be a welcome change.

It was agreed that this was to be a father/son outing, so around 11:00 today Sam grabbed his favorite Beach Boys CD and the two of us headed out.

The car show was relatively small and was set up in the marina area of nearby county lake. We easily found an acceptable place to park (important because parking places are often an issue with Sam) and got out to take a look at all the goodies. Below is a sampling.

Near the end of our time at the show, Sam and I spent several minutes talking to the owner of one particular car that had caught my eye: the car was a 1953 Cadillac. It turns out that the gentleman’s’ father, a Korean War vet like my dad, was the one who had restored and maintained the car before his passing several years ago. The owner was extremely proud of the car and its history, and was more than ready to talk and talk and talk about it.

He told us what had been repaired/restored on the car and what had been left alone—left original. We learned that except for a few small areas of necessary bodywork, the car was still wearing its factory paint: 14 coats of deep, gorgeous, emerald green lacquer. The body of the car was outstanding; the interior and the engine looked just as good!

The car’s owner—who hadn’t yet appeared to notice any “difference” with Sam—grabbed my son’s arm and asked him to take a guess as to where the gasoline filler cap was on the car. Without hesitating at all, Sam pointed directly at the driver’s side taillight. The owner was floored, as was I. (I have absolutely no idea how Sam knew this.) The owner told Sam to go ahead and push the “button” (which looked like part of the taillight lens) and when he did the red taillight flipped up and there—as Sam predicted—was the filler cap!

The owner then ushered Sam and I around to the front of the car.

After examining the engine for a bit, the owner changed the subject to the car’s “Dagmars.” (I had no idea what he was talking about, but he was motioning towards the car’s front bumper: specifically, the twin bullet shaped components of the front bumper.” Noticing that I had a mystified look on my face, the owner grabbed a photo album so I could take a gander at just what he was talking about.

It tuned out that, “Dagmar,” was one of the favorite pinup girls of that era—the Americans fighting in Korea had apparently been particularly fond of her. According to the owner, when the GIs retuned from Korea they noticed a certain . . . resemblance between Ms. Dagmar and the ’53 Cadillac’s bumpers and named them after her. See the photos below; I’ll let you make the connection.

Life Magazine cover featuring Dagmar (found on Wikipedia)

All told, Sam and I spent about an hour at the car show. It was a welcome treat!

 

Sunday Spin #43, The Moody Blues, “Question”

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Sunday Spin is a weekly feature of Coalescence. I use it to highlight some of my favorite music and talk a little about what the song means in the context of my life. Comments are highly encouraged! 

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Released in 1970, here’s this Sunday’s Spin!

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In the late ‘60s and early ‘70s our family lived out in the country—way, way out in the country. During the summers of my 13^th, 14^th, and 15^th years, I earned spending money by cutting weeds out of soybean fields. Weeds frequently choked soybeans fields then, so it wasn’t hard at all to find a farmer willing to hire you to “clean” his fields.

The job involved walking through long rows of knee to waist high soybean plants and using corn knives (machetes), hoes, and weed-hooks, to cut sunflower plants, morning glory vines, ragweed, volunteer corn, and on occasion, long stands of cannabis from the desired crop. It was hard, hot, itchy, miserable work—especially for someone like me who suffered from hay fever—but it put a little fun money in your pocket.

Aside from teenage banter, and ogling the halter-top-wearing farmer’s daughters who often worked alongside us, the only entertainment we had was the music we listened to on our pocket transistor radios. I remember listening to Question by The Moody Blues as we slogged through acres of weed-infested soybeans hacking away at weeds; hard work, good days, great music then.

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 Are you a Moody Blues fan? Do you remember the song? What was your earliest job?      

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