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


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.