December 27, 2010

Muscle Mags


Muscle Mags
Originally uploaded by Bill The Pony
Found on my Drugstore magazine rack.
I have a feeling one of these guys is dosing

December 20, 2010

Chugging the Holiday Spirits

On the THIRD attempted weekend, we finally got our Christmas decorations up in the yard. If you recall from last year, we actually put ours in the BACK yard, so Melissa can see them from her window.

Christmas Pig Bright Flamingo Penguin Sentry
Backyard Lights

Matthew is now out of school for the remainder of the year. And I have no vacation days left. Even when you're a telecommuter, you still feel it when there is no one else in the "Office". Just you, toiling away, getting out-of-office responses for everything you ask or need from people. *sigh*

But back to Matthew for a moment. I've long wished I could draw so I could illustrate some of the exchanges that we have, but that is just not in the cards. So I've gone for the free web application XtraNormal to provide this... in a highly abstract form. Below is the actual conversation I had with him this weekend:


November 30, 2010

White Out Conditions


White Out Conditions
Originally uploaded by ted @ndes
As a reward for getting good marks at school, I have been giving Matthew the Lego Series 2 Mini-Figures. (Special characters like a Lion Tamer, Surfer, Roman Legion, Vampire, etc.) Of this series, people don't like the Mime character, but some have started Flickr Photo Pool for creative uses of the figure. I think this one is my favorite.

November 26, 2010

Getting to Thankful

I wish I could say that things were going well this week, but they're really crappy right now. Melissa's Grandmother is near the end, and her parents had to go up to visit her and help out Gordon, her husband. They took Matthew with them, since I couldn't watch him and Melissa while I worked this week. So it's just Melissa and I in a very quiet, empty house.

We had a Pre-Thanksgiving Dinner on Sunday, but I royally screwed that up by mis-reading something Melissa was trying to say and reacting badly to what I THOUGHT she was saying. No matter how much I apologize I can't forgive myself, because by the time we settled down and got things straightened out, dinner was pretty much over. Matthew wanted to go watch TV and her Dad had to go take care of a neighbor's dog. I asked Matthew to stay and tell Mommy what they talked about, and he was happy to relay that to Mel while I fed her. It just was food on a plate for me at that point, no special feelings attached to it. I had ruined the holiday for Melissa by getting stressed out and causing a scene.

Melissa's Mom takes care of most of Mel's needs while I'm at work, but it's all me this week. And to boot, She's having a rough time this week with painful leg spasms and a lot of drainage. I'd hoped to take her out to see Deathly Hallows during the week, when the crowds were lighter, but she hasn't felt well at all.

On top of all that, I get the news that MY grandma, who has been living alone in a cottage on the outskirts of a senior community, has had increasingly bad dementia episodes and just had to be admitted to their rehab facility. She won't be able to live by herself anymore, and she's asking when her husband and sisters (all dead) are coming to see her.

Life is kicking us in the head at this point. How do I deal with all of it?

This is where my Training kicks in.

[ Things are bad now, which means they were better before. ]
[ WHAT was better before? Type it out. Find the Thankfulness. ]

Her Parents and Matthew are usually here. Her parents are wonderful and supportive of us. They let us live here, help take care of Melissa and tutor Matthew in his homework. They love us Kern folks and take great care of us. We never would be able to function as a family without their continuing help. And they will be back Tomorrow. I am thankful for them.

My Grandmother is 95 years old, and was able to live independently, even work in her prize-winning garden, until just now. She has remained healthy and active a dozen years after others her age have had to move into nursing homes. And even in her dementia, she seems content and happy, because she thinks loved ones long gone are still with her. I am thankful for her longevity and spirit.

I mis-read Melissa and caused a scene, making her cry. But 98% of the time I can read her head-nods, blinks and expressions properly and get her what she wants. Sometimes I am the only one who CAN read her. It's more art than science, and I can usually read a simple request with just a look from her, and predict what she is spelling out in just a few letters. I am thankful to be able to communicate with the woman I love.

Melissa has a terrible disease that can take a person in 3 years. But while ALS has taken away her speech and movement, she is still able to use a computer. With that, she can communicate with her friends, watch movies online, even do some of our Christmas shopping. And the progression of her disease has pretty much stopped since last fall. So 3 years into the disease, and she is still able to retain some independence and do some things she loves. I am thankful for the abilities she still has, which give her joy, and the fact that she is still here, which brings ME joy.

And we are both thankful for the Internet Army of supportive friends who help us alternatively deal with life, and forget about it for a while. Happy Thanksgiving, everyone.

November 14, 2010

A Much-Belated List of Thank-Yous

Here we are in Mid-November, at the end of "Flamingo Season" as it were, and I am woefully behind on my posting and thanking. I apologize, but Melissa is cramming for her dual PhD's in Forensics and Criminal Justice from an Online University. That must be it, because she watches these training DVDs that come in the mail. And I have to say, I really admire her diligence--she is studying them probably about 5 hours a day now.

The University must have a few different campuses that produce these training videos, because they have names like "CSI: Miami", "CSI: New York", "Law and Order: Los Angeles". I've seen a couple of them, and the production values on these things are pretty incredible, but one of the Criminal Justice videos has Ice-T as one of the cops. MAN, talk about falling off the map, yeah this is the same guy who was in the Rap/Rock outfit called "Body Count", talking trash about police, and now he's PLAYING one on the educational video circuit. Talk about irony. Just like his half namesake, Ice CUBE, who used to be a gangsta rapper in N.W.A., and now I believe works exclusively for ABC Family:

Ice Cube NWA Sellout Macro LOL

I suppose that's what money will do to people. But I digress... Mel's cramming REALLY hard on these things, and my workload has been insane lately, so I've not had much time to type more than a 2-sentence Facebook update in months. But since I'm the Night-shift nurse on the weekends, I can get a couple of hours of computer time in while she sleeps ever-so fitfully. So here goes :

1. Thanks to everyone who donated to get us this nifty logo!

Thank you to Janine+Ron, Bonnie, Kathleen, Amber, Rebecca, Rachel, Maggie, Michelle and Flora (Olotie)! Thanks to your help, we now have one seriously cool logo:

Fiver Flamingo MEL ALS
"Fiver's Team" was cool and all, but now (thanks to Janine and her Marathon Flamingos) we have a very cool mascot and now, a logo that shows a lot of character. Thank you so much for helping me bring this to fruition! This is something we can use for years to come.

And for some reason I'm having a creative block on those Icons I promised, but here's something to tide you over for the time being...Fiver Flamingo MEL ALS Fiver Flamingo MEL ALS Fiver Flamingo MEL ALS

2. Thanks to those who donated to Fiver's Flamingos team for the Walk to Defeat ALS!

We raised an incredible $5,227 this year! You all were incredible, and really took Melissa's case out to the people. ALS doesn't have it's own telethon to raise money every year, so this walk is their one shot to help fund all the wonderful support that the ALS Association of Georgia does for people.

And as obscure a disease as ALS is, it's funny how so many people still know someone who was affected by it. Such was the case for Berg: When he asked permission to put up a poster at the private school where he works, the principal decided to make it a "Dollar-dress-down day" where kids could pay $1 to wear regular clothes to school (instead of the uniform), and the proceeds went to the ALS Walk! We even got a T-shirt signed by Berg's class with all sorts of encouraging messages on it. So a special Shout-out to Berg and his awesome school!

3. And a special Thanks to those who braved the frigid weather and came out for the Walk to Defeat ALS!

It was INSANELY cold that morning, but you, the faithful (and obviously warm-blooded), would not be daunted. Mel was sad that she couldn't do the actual walk, but the weather was just too much for her. We figured that it would be a bit counter-productive to catch pneumonia and go back into the hospital, just to do a walk to raise funds for ALS patients, so she had to stay in the van with the heat running until we were done and it had warmed up a bit. But she was so very happy to see you all out there for her, and we were glad to get the chance to hang out with you all for a while.
ALS Walk 2010 - Fiver's Flamingos

4. And lastly, thank you to our friend Shawn

Melissa didn't think she could handle another of our annual trips to Disneyworld, with her condition. I knew that I couldn't take care of her AND Matthew by myself, and I couldn't afford to hire a nurse to come with us (like we did for DragonCon). But I wanted to do this for Melissa, so I booked us a trip the last weekend in October and bought us into Mickey's Not-So-Scary Halloween Party, where Matthew would do his trick-or-treating through the Magic Kingdom. Shawn's birthday is actually on Halloween, so I asked him if he would come along as a companion and we'd cover most of it his birthday gift. He graciously agreed, and he was not just a great friend to have along, he is actually much better with kids than his reputation might lead you to believe. He showed great restraint (in not giving Matthew a beating he SO richly deserved at many points) and incredible patience with us, since it takes so much longer for us to do things. He also showed great endurance for pain by not complaining when Matthew made him watch the "Shaun the Sheep" DVD "Little Sheep of Horrors" in it's entirety. God bless him, he deserves a Medal. (Well, he DID get a little birthday dessert at every restaurant we went to, so that made up for it somewhat, I think.)
Matthew and Donald @ Chef Mickey's A Beer with Mickey Shawn's Birthday

So thank you to everyone, you have really made these past few months really wonderful for Melissa!

September 16, 2010

Lyric Analysis: Bust A Move

After having an awesome time dancing with loads of friends at the DragonCon to "Bust A Move" by Young MC, the lyrics actually hit me for the first time. Consider this:




Your Best Friend Harry
Has a brother Larry
In five days from now, he's going to marry.
He's hoping you can make it there if you can
'Cause in the ceremony you'll be the best man

This is a telling story about Larry, actually. First off, he obviously has no real friends of his own, and there must be some bad blood between him and Harry, if he skips over his own brother and chooses the protagonist as the Best Man. I can imagine there would be some fallout after the ceremony, since Harry would find out about it, and would be understandably upset at the slight.

Then there is the last-minute nature of the wedding. Why is Larry dropping this invitation of honor on the protagonist with only five days of notice? Is it a "Shotgun" affair? Is a Green Card involved? Or was there a last-minute change of plans? Perhaps the best friend Harry WAS the Best Man until he and Larry had some argument or falling-out? Is Larry's offer of the position to the protagonist a simple revenge tactic to get back at Harry?

What was once a bit of dancefloor hip-hop has now become an epic of near-Shakespearian proportions. This is just how my brain works sometimes.

September 06, 2010

Who is This?

After getting back from DragonCon this afternoon, our son greets us, pointing out his newly-lost tooth. ("I got two bucks for it!")

Then, while I'm unpacking, he comes back in wearing a black fake mustache.
"I command that this house be sold!"  he declared in a fake-important voice.

I squinted at him, "Okay, whoever you are, why?"

"I am Barack Obama. and I do not have a house. So I will take this one."

I told him sorry, that we needed the house to live in. "And besides, you have the White House in Washington D.C. to stay in."

He wasn't prepared for this, so he dashed out of the room. He returned, walking casually, 30 seconds later without the mustache. "MAN, who was THAT guy?!?"

August 23, 2010

Conversations with Matthew - Disappointment

After dinner on Friday, Matthew (8) got suddenly serious.

M: Daddy, did you ever, um, want something really REALLY a lot? And it didn't happen?
C: Sure, many times. When I was growing up, about your age, I wanted to be an astronaut more than ANYTHING in the world. But I found out that most of the people that go into space are scientists, and I just couldn't do the high-level math that those people could do.
M: Math?
C: Really HARD math called Calculus, and hard science called PHYSICS. It's what they use to calculate stuff about stars and planets. It's really hard, and I couldn't pass the math classes. So I couldn't be an astronaut.
M: (sigh) Oh.
C: But that's okay. When I couldn't pass these math classes, I found out I was really good at Computers and I learned how to program them! And that's what I do in my job now, and THAT makes me happy. So even when you can't get everything you want, sometimes that can help you find something different that can make you just as happy.

I was feeling pretty good about dispensing the fatherly advice. Showing him that even Daddy was human, and it's all right to fail, because sometimes failure can help you find out something you didn't know about yourself.

C: So what didn't happen for you?
M: Oh... Well you know in LEGO Indiana Jones 2? Well, I really wanted to find a lego guy with a shovel, because there are things I need to dig up. But (SIGH, pout) I just can't find one ANYWHERE.

*Parental Facepalm*

July 21, 2010

Some Thoughts on AVATAR [Spoilers]

Through the magic of NetFlix, the home-bound Kerns finally saw AVATAR (James Cameron's 3D Epic, NOT Shymalan's "the Last Airbender").

Franky, I thought it was a great movie. Good to see that Cameron isn't all about the geeky technical details, he can still write and direct a decent action flick.  Yes, it was riddled with minor plot holes and common "Tropes" used by many movies, but it was overall a solid movie and not the "Pocohontas with Smurfs" that people were claiming.

Like many people, I was moved by the story. Some came away with a renewed interest in living in harmony with the natural world and the rejection of America's evil Military/Industrial Complex. But, me being me, I had another line of thought after seeing the movie: [SPOILER WARNING!!!]
Avatar Banshee

According to the movie, the Na'vi and their flying Banshees apparently "Bonded for life", and Jake's (let's call him "Patches") was faithful to him. Patches even stayed behind when the Hometree was destroyed, awaiting his master when all other Na'vi had abandoned him. So when Jake returned to his Navi body, Patches was there, forgiving, accepting, showing him that even though Jake was a traitor to the Navi, Jake was HIS traitor, and Patches would always stand by him.

And in return, Jake took flight with patches once more. Everything was just like old times, until Jake told Patches that he wanted a BIGGER, meaner Banshee to ride.

Avatar Banshee 'Big Red'
Adding insult to injury, Patches even had to help Jake CAPTURE "Big Red" here. As the final battle sequence went on, I can imagine Patches huddled in the corner of the burned-out HomeTree, sniffling, wondering what was wrong with him? If maybe he had flown faster or been stronger, would Jake have stayed faithful to him and not needed to stray? The Banshees are not used to such emotions, so the tears sting Patches' eyes, and since they have claws used for gripping onto rocks for hands, his attempts at wiping them away leave him cut up like Edward Scissorhands trying to put in a contact lens.

And as a post-credits sequence, you can imagine Jake coming back to Patches, perhaps holding a bouquet of small rodents as an apology.
"Patches! How wonderful to see you again!"
"SCREEEEEEEEEEEEEEE!" [How dare you come back here, after what you did]

(Of course, the Banshees don't have an exact language, so Jake can only guess at what is being said. And even that badly.)

"Whoa, easy boy! It's me, I'm really a Na'vi now, this is my real body! Neytiri's Mom fixed me up real good."
"SCREEEEEEEEEEEEEEE!" [Sure, you look great. What about me, huh? How do I show my face on the cliffs anymore? Every SINGLE Banshee on the CONTINENT was in that battle but me! And every single one of them saw you riding... that... THING. You bonded with it didn't you? DIDN'T YOU?!?!?]
"We saved the Tree of Souls! We sent those 'Sky People' packing back to my... er.. THEIR world! We won't see any of them again, and I'm back for good.
"SCREEEEEEEEEEEEEEE!" [So, you had your little fling. Is that what you needed to prove that you were a REAL Na'vi Man, some big conquest? And now you've let him go and got that out of your system, and we're supposed to go on like nothing happened? Do you Realize what you have done?]

----------
So Jake Sulley may be the savior of Pandora, but he also corrupted it by introducing infidelity to what was once a pristine, monogamous relationship.

July 18, 2010

The Gift of Song

A few weeks ago, a lovely woman named Billie from our church died. The choir quickly got together a rehearsal and learned Billie's favorite arrangement, "The Lord Is My Shepherd" from the BBC Comedy "The Vicar of Dibley"


It was beautiful and moving, and it was amazing that our choir, (a largely self-taught and by-the-seat-of-our-pants group), learned it so well after just one practice.

Choir call-time was an hour before the service, and I was on my way up to the church. It's a 20-minute drive, a time which I often try to center my mind, but today I needed to warm up, so I started singing in the car. With the radio at first, but then I turned it off to sing alone. After a few minutes of vocal free-association, I started singing "If Ever I would Leave You" from Camelot. I hadn't sung this since my final recital my senior year in high school, but out it came, complete and without a hitch. And just to see if I could do it, I sang the rest of my recital, nearly perfect from memory: "Everybody Says Don't", "Rainbow Connection" and even a little German for Beethoven's whimsical "Song of the Flea. And even more amazing is how different my voice sounded compared to then.
----
I had one year of voice lessons, my senior year in high school. One of my best friends' mother helped out with the school's spring musicals and also gave voice and piano lessons. Her name is Judith Patterson. I have a long list of things that the Patterson family has done for me over the years, but Judith game me an incredible gift in that single year of lessons-- a foundation that I have slowly built upon since then.

Before that I'd dabbled with instruments. two years of piano gave me the basics of music theory, six years of playing tenor saxophone in the school band, even a year in the percussion section. At the end, all of these left me wanting. I wasn't very good at them, and I really didn't feel the desire to continue. My junior year of high school, I left the band to join the choir with my friends. At that point, I was barely above shower-quality singing, but their support and lots of practice got my foot in the door.

After that, it was just a matter of sticking with it. By the time I finished high school, I had sung in the school choir, was the Bass in the school quartet, performed with the county summerstock theater and even did an 8-month stint in a college a cappella group called B Natural. (It was for the local community college, which was in dire need of singers. I and several others were found in high schools and we insisted we were all "freshmen".) Once at the University of Georgia, I immediately joined their renowned Mens Glee Club and got a coveted slot in their a cappella group, The UGA Accidentals. Later I sang in two other independent a cappella groups, Local Vocals and LiveWire. From High school on through college and to this day, I have been a part of my church's choir. Of course, "My Church" has changed over the years, but I've almost continuously been a part of *A* church choir since high school.

From each of these groups, I have gained knowledge and experience, met incredible people and gone all sorts of places. And one event after the other has brought more joy into my life. Because I joined the chorus, I was told about summerstock theater. Because I was in summerstock theater, I met up with Brad Maffett, who directed me in B Natural and Local Vocals. Because of my work in B Natural, I was able to move the UGA Accidentals towards touring and recording CDs. Because I was in the UGA Accidentals and Glee Club, I met my lovely wife Melissa, who sang in the Women's Glee Club and Concert Choir. After Melissa and I were married, we moved to Flowery Branch, where we found St. Gabriel's Episcopal Church, and were drafted into the Choir upon our first visit.

My life could have been so much more ordinary, but that single decision to start singing and that single year of voice lessons from Mrs. Patterson set in motion the events that have defined all the key moments of happiness in my past 20 years. The fact that I can still remember--and sing--nearly every piece of music I've learned, given my limited training, is a testament to how much it means to me, how much a part of me singing has become.

So thank you Mrs. Patterson. You have changed my life in countless blessed ways and made such a difference that I cannot imagine my life without your music in it.

July 06, 2010

When it's OK to Cry

This weekend, I almost lost it and cried, twice.

(1)

'Nuff Said. If you didn't well up at least twice during this movie then you never loved a toy in your life, you heartless guttersnipe. Now I only wish that I knew the whereabouts of my Star Wars figures and a certain stuffed weasel that I named "Schnookie".(PS: Not This one.) I never thought another cartoon would be able to plumb the emotional depths that Jessie's Song from Toy Story 2 did for me, but I was wrong. This script was amazing and the direction was spot-on.

(2) After Matthew fell asleep last night, I snuck in to turn off the Lava Lamp that he uses as a night light, but accidentally knocked over a tub of legos *crash*. He half-woke up, not really conscious, looked at me and lifted up his arms, inviting me in for a hug. I smiled and gave him one and he settled back down, and was asleep again before I left the room. I don't know whether he was saying he forgave me, or if he just wanted a hug, but I'm just glad that at some level, he still wants to be close to us like that.

June 11, 2010

FYI: ALS and Communication

Maddy asked me this in my last post, and I realized that most of you probably don't know this either:
Hey Chris.. in terms of getting the nurses kinda trained like you said in your last post... why don't they send you ones knowledgable in ALS? Or is there no such thing?

-------------

ALS is considered an "Orphan Disease" because there are supposedly too few people who have it to make "Fiscal Sense" for Pharmaceutical companies to be interested in researching a treatment or cure. the only ones doing so are the few ALS-specialized clinics (of which Emory Hospital is one), The MDA & ALS Association, and ALS-TDI -- a non-profit "guerrilla research lab" focused on ALS. We have to make do treating it with separate medications by the symptom.

Likewise, there are few nurses who have experience dealing with ALS specifically. However, in terms of care-giving, ALS shares many external symptoms with other diseases like Muscular Dystrophy or Spinal Cord Injury patients. We need someone experienced with the Vent and Tracheostomy care (which is fairly common), some light physical therapy and the ability to adjust her position.

However, we also need someone with the skill to be able to communicate with Mel (which is not common at all). The communication is the make-or-break with these nurses, and it's not a skill that can be taught to many of them. It's easy for her to communicate during the day, when she can type out words on the computer with her head-switch. But at night, it's not feasible to use, so we have to "run the alphabet" using a method similar to this video:





We run the letters, Melissa stops us when we get to the one she wants, and we keep a running tally of them. Remember that she is effectively paralyzed below the neck, so we have to rely on head shakes, blinks and facial expressions as signals. I have become fairly skilled at word/phrase prediction with her (kind of like the predictive text messenger programs on your phone) and can guess fairly accurately what she's trying to say most of the time, given just a few letters. Most of the nurses don't have trouble running the actual letters of the alphabet (and I DO sadly have to use that word "MOST"), but it's more difficult reading Melissa's signals at night, because of two factors:
1) She is lying down in bed, which makes it harder for her to signal, and
2) She has Ambien and Muscle Relaxers in her system to help her sleep. This makes her a bit groggy and makes her facial expressions less obvious, making it harder to read the signals.

When you get down to it, there is very little that needs to be said in her nighttime routine, but each thing is vital to her being comfortable and able to rest. Communicating needs like "Move legs up", "shift arms forward" or "Roll me over" are most of the messages. It may seem simple, but imagine that every time you needed to do these things at night, you had to flag down another person and spell it out to them, letter by letter, in what amounts to Morse Code.

For Melissa, even getting someone's attention can even be difficult at night. We have an alarm set on the Vent that beeps if she coughs, and she uses this to call us over or wake me up. But sometimes she can't set off that alarm because of the muscle relaxers, and the only way she has to get attention is to breathe quickly. The vent itself is very quiet, but there's a small click when it changes from inhaling to exhaling and slightly more "wind" noise when it's pushing the air into her lungs. The nurses have to learn to listen for this change in breathing, but when they're not there, I've actually learned to wake up most times when this happens. (Imagine that, a white boy who has a sense of rhythm!)

----
So I hope this helps Maddy, and let me open the floor here for anyone else:

Is there anyone who has a question about ALS or Melissa's condition specifically?

June 09, 2010

Nocturnal

I have to come clean about something that has been weighing on me. For the past few months, after everyone else in the house is asleep and Melissa has gone to bed, I've been having women come to the house and... well, fulfill a certain need that ALL men have naturally. One that lately, I have not been getting met, with Melissa being in the state that she is right now. They show up around midnight, and are gone when everyone is getting ready for work and school in the morning, so most people are none the wiser about this.

Matthew has no idea, he sleeps like a log at night, and they're gone long before he gets up. Melissa's parents have occasionally stayed up later than usual, and there has been that awkward meeting in the upstairs hall. They know what's going on. They know the stress that I'm under. But they also know that I love Melissa very much, and that I am doing everything I can to take care of her. I've told my parents about the women. Hell, Dad understands my needs, he's even given me some money for it, if you can believe that.

At first I tried to deny these physical needs, push them to the back of my mind. I figured that if I was strong enough, if I just loved her enough, I wouldn't need this. But the body can only go so long without it. I felt some shame at first, but a neighbor had some connections, a friend who ran a service that would provide nighttime companions, one after the other. If I didn't like one, I could just send her back and someone new would be sent out the next night. I have my favorites that come for repeat business, but sometimes there will be three or four different ones in a week. The service is a lot more convenient for me, since I don't really have the availability or time to go out and look for companions myself. One time, they send someone who was actually an acquaintance of ours, and it was a little embarrassing to have her in the house, seeing us like that.

I've told my pastor, and he isn't giving me any grief about it, but he always was a bit more Progressive. And now even Melissa knows. She's not happy about it of course, she'd rather we have a traditional arrangement where we'd sleep together like most married couples. But a few nights a week, she has come to terms with the fact that I require a slightly different arrangement to satisfy my needs.



I'm talking about night-shift nurses, of course. They come in around 11 PM a few nights a week and take care of Melissa while I get some rest on the couch downstairs. Essentially, I am paying to sleep.


I posted about a year ago about the most challenging aspect of caring for Melissa being LUNCH. Things have changed a great deal since then, especially since she got her Tracheostomy in July of last year and started sleeping with the Ventilator (aka "The Vent"). Since then, meals have become easier (now blended up and put in her feeding tube) and sleep has become the #1 difficulty for both of us.

All of us get uncomfortable when we sleep, and our bodies automatically move us to another position. But since Melissa has ALS, she has no control of her muscles below the neck. So at night, she gets more uncomfortable until it wakes her up, and she needs to signal me to turn her over. This happens, on average, once every 90 minutes. Add to that the times where the Vent pressure causes her to cough, and she needs her Trache suctioned out, which can happen between 10 and 30 times a night, and you can see how getting any restful sleep for us is a challenge. While Melissa can sleep in later to make up for this, I have to wake up and get to work at 8 AM.

At bedtime, she takes a combination of muscle relaxers and one sleeping pill. That should keep a normal person asleep for the whole night, but she will usually only sleep for about 2 hours before the interruptions begin. While I have become accustomed to waking up and quickly responding to the Vent alarms (indicating a cough, either natural, or elicited by Melissa to get my attention), the cumulative effects of not getting REM sleep do take their toll on you. Sleepiness first, then lack of concentration, forgetfulness, mood swings, and a certain ADHD-like symptoms that just make working the next day very challenging.

We have two agencies that provide nurses for us, (Maxim Healthcare and Better Private Duty), and it's a challenge to find nurses that really can help us. Melissa doesn't require much in the way of skilled care, but it takes a certain skill to communicate with her, and not many of them can grasp that method. We had two great nurses that would each come in two nights a week: Jody from Maxim and Tamika from Better Private Duty. They knew their stuff and we got along well. But after Melissa went into the hospital in March, Jody had to stop working nights, so we were down to one trained nurse, and the other two nights a week, I'd train the new nurses from Maxim, so I'd have to stay up there and get very little rest. And since most of the nurses really couldn't grasp the communication method that we use, we've had a near-constant stream of new nurses for the past couple of months, and so I haven't been able to get that rest.

We're still "auditioning" new nurses from Maxim today. The only thing really keeping me going was Tamika, the trained nurse from Better Private Duty. When she was here, I could sleep peacefully downstairs with few interruptions. But last night Tamika came in and declared that she would be gone for a few months because she was pregnant. While we are happy for her, I selfishly am thinking about losing those restful nights of sleep and thinking about the long audition process for finding a new nurse from BOTH companies.

Even so, I am thankful for the help that I am getting on this. I wouldn't be fit to work if I had to do all the care of her at night. My parents and relatives have chipped in to help with the monthly cost of the nurses, and after the hospital stays as of late, I think we've hit our Out-of-Pocket Maximum for our HMO, so they will be picking up more of the cost of it until the end of the year. Like most things in dealing with ALS, any help we get is appreciated. As hard as things get for us I always keep in mind that many people who get this disease don't have the support structures of nearby family, the care of one of the few ALS Clinics in the country, and loads of friends who care for her. That is what keeps us positive about the whole situation.

June 02, 2010

Way to Normal

Things are just now starting to get back to normal for Melissa and I. We've spent the majority of the month in the ICU of Gwinnett Medical Center - Duluth, including our 12th Anniversary and Mother's Day. So not the most appropriate place for celebration.

She went in on Saturday the 8th because she was still spiking 102 fevers and having upper respiratory symptoms, even after four days on Zithromax (one of the strongest oral antibiotics out there) so they told us to come into the hospital for an X-ray of her lungs to rule out Pneumonia. Guess what? Yeah, it was. So we had to check into the ICU. I had to stay with her of course, due to her ALS. So it was a week sentence for both of us. A couple days later we got the labs back and found out that it was MRSA, a drug-resistant infection caught mostly in.. you guessed it... HOSPITALS. So our extended stay in March probably gave her this as a parting gift and it's just been biding it's time. Luckily, it was the lung form of it, not the nasty skin lesion kinds, which was easier to treat. (But still not easy.)

I told the nurses that I'd heard of Viral campaigns to get people's return business, but never a BACTERIAL one! Heh. Hmph. Well, it seemed funnier when we were stuck back in quarantine.

Long story short: She got better, they released us on Friday, she got worse and we came back on Sunday. Stayed on the other side of the ICU floor from Sunday through the next Tuesday getting rid of ALL the nasty infection with some serious ass-kicking antibiotics that ended up kicking Melissa's ass along with the MRSA.

As I FaceBook'd, "The Place Where Everybody Knows Your Name should probably not be the local Hospital ICU". We got to know most of the nursing staff at that hospital, as most of them had us for at least one shift. I even sprained my foot jumping out of that awful hospital recliner I was sleeping in, when one of her alarms went off during the night, and when the tech came out to fetch me for the X-Ray of my foot, she said "Well, Hello Mr. Kern!" She apparently did some of those great 4 AM in-room X-Rays of Melissa during our stay there.

I was able to work half-days from the hospital thanks to an INCREDIBLY understanding boss and some awesome co-workers that had my back. And to tend to Melissa for that time, some members of our church choir came out to tend to Melissa and keep her company, which she really enjoyed. I also read the first two Percy Jackson and the Olympians Books (Love them!), and Melissa watched more back-to-back episodes of Law and Order and NCIS than anyone under 60 should ever watch.

In any case, we're home now, and I'm almost caught up at work. They had to play around with Mel's meds to allow the Uber-AntiBiotics, and the shake-out of that is never pretty, but we're starting to see the shores of Normal again.

My big gripe with the whole stay now? Besides the debt of sleep that I'm still working on, I gained 6 pounds eating cafeteria and vending machine food for two weeks. Ugh.

April 06, 2010

Mel, Pneumonia and the Hospital

Most of you know that Mel was in the Hospital for Pneumonia a little while back, and due to the hospital's flaky WiFi and some other BS (more on that later), I wasn't able to get word out. So the following is my day-by-day journal of the experience, starting when I realized that we'd be there long enough to warrant an entry.
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I think today is Thursday.  Not quite sure, the days sort of run together.  BONES and Law and Order show in blocks most nights on TNT apparently,  so it is hard to tell. 

How we got here: We were going to use the Tuesday doctor appointment to get Mel caught up on her immunizations,  but she spiked a fever out of her garden-variety cold on Monday night and we had to make it a check for pneumonia.  Sure enough,  her breathing was labored and shallow and her lungs sounded bad. We had to check into the hospital and get checked out for Pneumonia. 

The nurse walked us to the new Gwinnett Medical Duluth Hospital that was next door,  which we did not know was there.  And that was something, because Melissa and I, we know hospitals. There was a segment on TV a few days ago about doctors' reaction to the new Healthcare Bill, and Melissa and I immediately recognized the backdrop of the scene as the ICU at Emory University Hospital in Decatur.  We used to joke that instead of the Disney Vacation Club,  someone should start a Hospital Vacation Club,  where for a nominal fee,  you can bank your points for stays in all the best hospitals in the country.  “Seven hundred points buys you a week stay in the famous Mount Bethel Hospital,  which was used in filming blah blah blah.”

Having a nurse from the medical offices check us in helped expedite things, and we were in for a chest X-Ray in 20 minutes. 40 minutes later, we had a bed in the ER. They needed to get some blood work on Melissa, and give her IV fluids and Antibiotics, but Mel's body was having none of that. It's always been difficult to find a vein with her, so much so that she's earned the nickname “turnip” because it's impossible to get blood from her. For the next 2 hours, six different techs stuck needles in no fewer than nine places on her body, including her feet, before striking paydirt with a vein on her neck. After stick number six, I was worried that she'd walk home with Stigmata.

I think we're going to find another Pulmonologist, since our current one decided that he didn't want to drive the 15 minutes from the Gwinnett Medical Center in Lawrenceville to come and see us here. So because of that, we had to wait for a shift Pulminologist to review the X-Ray and Admit us into the hospital proper. We waited from six until 11:30 PM for her to show up, and we didn't get to our room until 1:30 AM.  Then the happy folks at the ICU started their welcome parade. Hi! We need your vitals! Hi! We need your blood! Hi! We need to do a breathing treatment. Just a constant stream of people from 2 AM until 6:30 AM when the shift changed. We slept from 7 AM to 10:30,  only briefly interrupted by a visit from our pastor,  Father Bill.  He found me dead-out in the two-in-one,  but not enough of either,  recliner slash bed, trying to stay warm underneath those criminally thin  hospital blankets. He stayed just a moment to tell us that the parish had us in their prayers and let us sleep.

The rest is a sort of blur.  I had to call into work and tell them that I would not be returning until later in the week,  and my boss said she would assume I'll be back Monday,  and anything earlier would be a pleasant surprise all around.  Mel's parents brought in care packages for us each night,  usually two or three things from the house,  a change of clothes and some food.  They had some sort of guest wi-fi in the hospital,  but it would only load half of a page before giving up after five minutes,  and my Yahoo mail was totally unreachable.  So with few of the usual signs of time passing,  and little to do but wait for the drugs to take effect,  the time went by unremarkably.


UNTIL...  This morning. (Possibly Thursday) The doctor told us that her white blood cell count was normal again,  which is good,  but the x-ray wasn't improved, so there is a slight chance that this might be TB.  And because there was that chance,  we had to remain in isolation (Read: "quarantine") for three days while they run the TB tests on Melissa.  No visitors,  and all the nurses had to scrub up and wear masks and gloves to even enter the room now.  Yeah,  we were panicking a little bit.  Not thinking we actually HAD it,  but that we would have to stay in this room for three more days.  At least. 

Mel has been sleeping fitfully,  but I have been left to pass the short periods in between.  Looking outside as the parking lot fills up and empties again.  Wondering about the lives people go home to after a shift here.  About what they are having for dinner.  The only good omen we've had is the appearance of a half dozen ladybugs in the room.  One is even reversed—-black with red spots.  I have taken to whispering to them like Gandalf to his moths...  Speaking plans of escape from our tower.


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Saturday Perhaps?  Slept maybe tens  minutes total the whole night,  Mel just could not get comfortable.  Woken up from said ten minutes at shift change with the bursting entrance of four nurses and the flipping on of lights.  GAAAAAH.  Nurse number one says yesterday's blood tests showed her hemoglobin much lower than it was four days ago when she arrived. 
"What does that mean,"  I ask
"That she may be bleeding internally. so she may need a transfusion. As her husband how do you feel about that?"
Blink. blink. at her.
"I am ALL FOR the idea of my wife being full of blood."
Blink, frown at me.
"Means I'm okay with the transfusion. A Blood Cell Count is not something to fall behind in now is it?" I explain patiently.

And of course, being a hospital, we are still waiting, three hours later to talk to the doctor or be taken for any scans or tests to see if she is, in fact, bleeding internally.

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Later Saturday and we've finally seen that doctor. We told him about the nurse's speculation about internal bleeding and he got a weird look on his face. Then he plainly spoke "No. The body's bone marrow makes the red blood cells, and production slows down when you have a serious infection like Pneumonia. If you were having internal bleeding, your blood pressure wouldn't be this high, and it would need a place to go. And since you're not leaking blood everywhere, I think we're safe in that assumption."

Whew. Crisis averted. Unfortunately, the Pneumonia is still clinging to the floating doors of the titanic, so to speak, and we have to wait until another X-Ray on Monday for him to judge us healthy enough to leave. We are four days in and I'm going a little stir crazy. I can only imagine what I'll be like when I get back to work on Tuesday (Hopefully.)
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Sunday. we're still in quarantine but it should be lifted today sometime and we can bring Matthew in to see us.  Being under contamination isolation,  with all the nurses wearing masks and plastic aprons whenever they come in,  and now with Resident Evil: Apocalypse playing on TBS,  I'm having visions of Mel suddenly waking up with zombie strength and biting me in the neck.

Movies on:
Resident Evil - Apocalypse
Resident Evil - Extinction
Shooter

The once-hopeful ladybugs are dried up on the windowsill. They couldn't get out either.
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Monday.  The pulmonologist's partner, a short Indian gentleman, came in around eleven am.  The x-ray of her lungs is not showing improvement.  She is hardly coughing at all though, and what she is coughing up is old stuff,  lungs just cleaning house.  He also said that the third and final TB sample was collected a little too early,  so to clear us from isolation, he needs to take and process another one. That last sample was taken on Saturday morning, and we waited this long for it to get processed.

When can we take her home, I ask. And his answer stuns me.
"What is your hurry?"
Must. Control. Fists. Of. Death.
"We've been here a week, just waiting around for test results of one sort or another," I begin. "We have pretty much every piece of equipment in this room, AT OUR HOUSE, save for the I.V. and the X-Ray. So just send us home with an oral antibiotic and we can wait it out like normal people."
He eventually agreed.  But we sent another sample to the lab to clear us of the TB isolation, just in case. Then more waiting.
Movies on AMC:
The Fugitive
Silence of the Lambs
The Queen
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Tuesday. X-ray looks better. Buuuuut after Nurse Ratchet put in I.V. #12 in Mel's foot, it started turning red and swelling up. What the hell, this is a hospital, did she spit on it before she put it in or something? They have to roll in an ultrasound and check her leg for blood clots just to be safe. "It's a boy!" I tell Melissa, to calm her nerves.

After some last minute haggling, we are discharged. The TB test never did come back from the lab. I drive home cautiously, fearing that the little Indian guy is chasing us, insisting we come back. We were insanely happy to get home, and to see Matthew. Then we got upstairs to our room and found out the A/C was out. And the forecast was for 80-degree weather all week.
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Present Day:
Melissa is doing better. She's still a bit under the weather, but her breathing is worlds better. The A/C is still out, a few fans are keeping it at a summer-y 80 degrees, rather than the tropical 95 that it was. The parts just came in, and with any luck, the A/C guy will fix it tomorrow.

No quippy reviews of hospital food this time, it was just a soul-sucking time-warp of a stay.

March 15, 2010

I Laugh in the Face of Danger

Well, it's taken a long time, but I think I finally have come to full acceptance of Melissa's disease now.

We were at the Battle N Brew on Wednesday with some friends for their Geek Triva Wednesdays. I've taken Mel there three times I think, and the crowd there was pretty awesome about it. People there thought it was cool how she typed with her computer, and when I had to give her some water in her food tube, one patron joked "COOL! Is that VODKA?" The people there are helpful when we're trying to navigate the doorways and give us the space we need to accommodate her wheelchair.

Last week, it was also a celebration of lots of people's birthdays in the group, so there was cake and cake and cupcakes. And bless Mommagorn, she brought a Blender and had her son get some milk so we could blend up a Cake Shake for Mel to take in her Tube. We just plugged in a blender at our table and let that sucker go. And everybody in the place seemed to be cool with that. :)

Then came the moment of realization. The category of the question was "Disease". Given the history of the questions, I was expecting it to be something funny or movie-related. The question was read out: "Name the most famous person to have the following disease - Amyotrophic Lateral Sclerosis. This was also the first person to be on a box of Wheaties."

The room fell strangely silent. And I could not help it, I let out the biggest belly laugh I've had in a very long time. I was the only one laughing. They all probably thought I was off my nut, but I couldn't help it. THIS I know about. I do know quite a bit of trivia about this particular topic, yes. Amyotrophic Lateral Sclerosis. ALS. Lou Gehrig's Disease. We put down "Lou Gehrig " on our answer sheet, with the previous answer of "The girl at our table" scratched out.

I think the manager was lobbing our team a softball question, or maybe trying to educate the room a bit about her.