New Home and Old Talent

First, let me say that I love my new home. There are things that are less than perfect, and there are things that are downright annoying, but overall I am very happy with it. The neighborhood is great! Quiet, with lots of trees. I'll take pictures one of these days. There are many good things about this place, and probably the best is the short commute. One of my schools is five minutes away.

And the ward is fantastic!

That's not why I wanted to blog. I really wanted to brag about my finely tuned hearing.

I went for an EEG today, and the electroencephalographer (who does the EEG) was very nice. She was chatting with me while attaching the electrodes. Laynie was with me, because she couldn't pass up the chance to take a picture of me with wires coming out of my hair. I'll post it once it's downloaded.

As I was listening to this woman, I was trying to place her accent. Slower cadence... slightly more precise final stops... devoiced final consonants... I enjoy identifying the tiny differences in people's speech. I'm nerdy, so what?

I said, "You know, your accent reminds me of Laynie's mom. She's from Austria."

Her response: "Wow! I'm from West Virginia, but when I was a young clinician, I tried hard to suppress my accent. My mentor was an Austrian man, and I guess I picked up his accent."

If only this talent were marketable...

CI Update

Laynie has been pretty frustrated with her listening progress, and it's been tough for her to get a good map. She really hasn't had one since May. She got a new map (okay, I know it's MAP, but that just looks so silly... count on me saying map) December 4, but it was painful within three days. Yikes! She went in again on December 8, so her current map is from then. Basically, everything got turned down, especially the higher frequencies. That was great as far as her comfort level--she can now leave her processors on to put away the pots and pans. But it wasn't so great as far as her listening abilities. She's struggling with fricatives and stops, which make up quite a bit of the English language. S and Z (well, /z/) alone are hugely important in English. So that was frustrating. Besides the fact that we haven't done much therapy lately, what with her poor maps and my poor health. Despite all this, I had a hunch that Laynie was still making progress, whether she realized it or not. So, on a day when she was getting kind of down about her listening skills, I gave her the Compass Test. (Again--we had done one in July.)

The Compass Test isn't normed or anything. It's just a way to determine which skills to work on. But it's not a bad way to measure progress, since it's basically criterion referenced. Whew, sorry for the quick nerd-out.

As I'm sure you've already seen, I posted the Compass Test I administered to Laynie in July and again in December. I used a blue pen in July and purple in December. And she has made progress! Now... I have to add a few details, disclaimers and descriptions:

-Both times this was auditory only, using an acoustic screen.

-Notice that her Ling errors were different each time--different mapping problems each time.

-This test involves pointing to one of four tiny pictures. In July, I said any of the words Laynie asked me to, in addition to the target word. In December, I fingerspelled any of the words upon request (sometimes it's hard to tell what the pictures are supposed to be), but I only said the target word. So the test was harder in December, because she had less accommodations.

-She did get as many repetitions of the target word as she wanted--both times.

-In December, I had to say most of the words at a distance of about 6 inches for her to have a fighting chance at distinguishing the sounds. Not very realistic, but it seemed only fair.

-I was so pleased at how well she did on the consonant manner distinctions! That was levels 1 and 2. Consonant place seems to have made real improvement, too, which is wonderful. That can be a difficult skill. I know some kiddos who have had their implants for three years, who are still working on place. Place is the distinction between, say, /t/ and /k/. Or /m/ and /n/.

-This test is hard. You have to listen to a single word, out of context. I mean, it's not hard for a hearing person. When I gave it to a hearing kindergartener (just out of curiosity), she got 98%--missed bat vs. back. But we were in a noisy kindergarten classroom. Still, the test is VERY difficult for those who do not hear as well or are learning to listen. I have students who understand much of what we say but still get 70% or below on the Compass Test (which tells me that they are relying on context and/or have a weak vocabulary). I wish I could give you an example of one of the cards, but I'm in New York right now and don't have them with me.

-Certainly there was some guessing going on, both in July and in December. But in a field of four choices, 64% is much greater than just chance.

-Laynie is doing very well, despite all the challenges!

You might wonder how a person can get 64% on a listening test yet understand basically 0% in conversation. This is mainly because the test has only four choices for each word, rather than the thousands of words that could possibly be used in any given sentence. Finish this sentence: "I saw a _____." Too many possible words I might say. Also, on the test, Laynie does not have to listen for word boundaries in a sentence. That's harder than it seems! It's so easy for hearing people to know which part of a stream of sound is a single word. But it's only easy for you to do that in your own language. Think about when you listen to a foreign language, such as Chinese. Listen to a sentence. How many words did that person say. I would have no idea! I can't tell the word boundaries in Chinese. Or, if you don't sign, watch a signer. Where did one sign end and the next begin? Word boundaries.

Another thing that's a huge impediment right now for Laynie is her auditory memory. She basically has to develop two skills: auditory discrimination and auditory memory. Auditory discrimination is the ability to tell sounds apart (distinguish between them). Auditory memory is remembering what words sound like. Keeping them all in your brain so that you recognize them when you hear them. There are so many words to know! It's one thing to tell two words apart while practicing. It's something else entirely to recognize one of those words just randomly, when you don't know what someone might say.

Another thing that's difficult for Laynie is that she doesn't know what words are supposed to sound like. She's using her literacy skills to bridge the gap, but unfortunately, English is one of the most nonsensical languages in the world when it comes to spelling. Beat and beet? Why?! Time and thyme? Eh? And why don't you say the E on the ends of those words? Have you ever tried to explain the silent K in knee and knock? Or hard C and soft C? Do you even know the rules for hard and soft C? (I do, because I'm so nerdy: hard C is followed by a, o, u or a consonant; soft C is followed by e or i.. probably exceptions, though.) And by the way, why does putting H after C make neither hard not soft C but a completely different sound? What Laynie hears is not necessarily what she's expecting to hear, based on written English. Italian would really be much easier for her to learn. Less functional here in America, though...

Oh, I could go on forever. I love phonology and phonetics. Sigh. (Reveling in my nerdiness.) Better stop here. 

I will just add that Laynie is doing so well with a very difficult task. It has been surprising how much she really wants to learn to listen. I hope she can do it!

Next Laynie post has got to be music... stay tuned.

I Like This Guy

I saw a new doctor today: Dr. M, a gastroenterologist with Johns Hopkins. He was great!

He listened.

He explained.

He listened more.

He asked questions.

He thought.

He suggested.

He planned.

He wants to see my gallbladder out ASAP, given that I have signs of sepsis. However...

First he wants to do an endoscopy, to see how bad my reflux is, assess the damage it has caused, and see why I might be having the reflux. He does not think the reflux is related to the pain episodes. He sees it as a separate and equally concerning issue. That's because I have it pretty much every day, unrelated to what I eat (I wake up with it), and because I am having swallowing problems. Yeah, I haven't mentioned that one on the blog. Anyway, Dr. M wants to do the endoscopy before I have the cholecystectomy, because then he won't have to wait for me to heal from surgery, and because there's still the teensiest possibility that the pain attacks are not being caused by my gallbladder. But he thinks they are.

He thinks I probably passed a stone at the ER. While I was waiting to be seen (yes, read that with sarcasm). He doesn't understand why the ER doctor did a CT scan and kept looking for other causes, given that my liver enzymes were through the roof. Oh, and the fact that there was a .9 cm stone in my gallbladder!!! "Tiny little stones just like everyone has," my butt. Dr. M thinks I might have passed a stone with each pain episode, or there might have been just one or two that have hung out in the ductwork, causing problems. One almost certainly was blocking the hepatic duct at least twice: once while I was at the ER, based on the liver enzymes on the bloodwork, and once when I had the HIDA scan. Dr. M said there might be one still just "rattling around" in there, going up to the liver and down toward the sphincter of Oddi (where the bile duct meets up with the intestines). That could be causing some of the irritation and pain I have been feeling between episodes. That also could account for the septic symptoms. When the stone blocks the common hepatic duct, the bile backs up into my bloodstream. Nice! It would also cause plain old irritation of the liver. He wasn't sure that explains my blood clotting problems, though, and he is going to check clotting factors and take a look at my platelets. He thought maybe the combination of stones and Accutane might be doing something in that area.

He sent me straight to the lab, which was no surprise. Assuming I would need to sacrifice some blood but not knowing exactly what he would want, I had fasted this morning and not taken my Accutane. He ordered lots of tests. Two were at my request: blood sugar and cholesterol, just because I've never had them checked (and as long as I was fasting anyway).

I had a wonderful phlebotomist, a grumpy old black lady who informed me that she is one of only two good phlebotomists in the area (ha, she hasn't met Dr. D, my dermatologist). When I warned her that I am a tough stick and finding a vein usually requires multiple pokes and some digging and here is a good vein, she ignored me. But she got it in right away, no digging necessary. After filling the required seven--that's right, folks, seven--vials, she informed me that whoever said I had bad veins or had to poke me more than once (um, every Navy and BYU phlebotomist) was a fool. I completely agree. I love this woman.

So, the plan is:

-December 3, I will have the endoscopy, which Dr. M will do at the Johns Hopkins Outpatient Center. Boy am I familiar with that place! Both of Laynie's CIs were done there, as well as all of her mappings.

-I will have an appointment with another Dr. M, a surgeon. This will probably be after the endoscopy. I'm hoping for the day after, but we'll see what they offer. I'm kicking myself for leaving my phone on vibrate, because I missed a call from Dr. M-the-surgeon's office about an hour ago. I called them back literally less than 10 seconds later, having just missed the call, but naturally they were closed.

-I can't remember if I blogged it, but Dr. P, the first surgeon I visited, had scheduled me for surgery for December 3. I talked to them earlier today. They needed to cancel anyway, and I was wimpy and just said that I would have to call them back after I looked at my calendar. Not going to call them back. Not comfortable with Dr. P. Hopefully I like Dr. M-the-surgeon better.

Seriously, the timing on all of this could not possibly be worse. I have three students in crisis (ok, let's be honest, it's not the kids who are in crisis), and one student in semi-crisis. I have consultation meetings, pre-meetings, IEP meetings, planning meetings, due process meetings, and observations over the next few weeks. Plus presenting at the speech meeting in three weeks, which I have not even begun to think about. Well, it is what it is. I'm glad that I told people at work that I was having some health problems. At least they won't be surprised if something pops up on my calendar and I have to miss a meeting.

Alright, now I want to blog about more interesting things. New post!

I Am a Health Hazard

My body is emitting gamma rays, even as I speak (OK, type). Cool, right?

Today I had a HIDA scan, which was not as bad as I thought, but the results were much worse than I thought. Honestly, I almost canceled the procedure earlier this week, because I thought my doctor was barking up the wrong tree. You see, I have had two episodes (well, now three: I'm coming out of one right now, which is why I'm awake at 1:30 in the morning) of what the ER doctor described as "epigastric" or "colicky" pain. If this is what babies have when we say they are colicky, let me tell you, it's no wonder they scream! I have pretty severe back pain, and it doesn't hold a candle to this.

I don't know why I haven't wanted to blog about this, and now suddenly I do. Maybe I was waiting until I actually knew what it was. I'm not sure I do, though, still.

For my HIDA scan, a very nice radiology technician or nurse or something, named Linda, started an IV (had to try two different places, sigh). Well, first she asked me the usual questions, like my name and birthday, whether I'm pregnant, and whether I still have my gallbladder. Are there doctors dumb enough to send a gallbladderless patient for a HIDA scan? You see, a HIDA scan checks the function of the gallbladder, sort of, and the condition of the bile ducts. She asked if I had had an ultrasound or CT scan, and when she heard that I had had both, she seemed to think that this test was overkill. I was still thinking yup, this test is going to be a waste of my money. Good thing I have excellent insurance.

Through the IV, Linda injected a radionucleotide, meaning some radioactive material. She explained that a camera would pick up the radiation coming from my body and track it as it moved into and from the gallbladder. When it was in the gallbladder, the second part of the test would begin: she would inject CCK, which would make my body think I had eaten a fatty meal. That would cause the gallbladder to contract, so that the machine could measure how quickly the bile emptied into the intestines. It could also "replicate my pain." Great.

So I laid in a scanner something like this, for about an hour:

The only difference was that the camera (the large, hovering rectangle) was much closer to my body. Maybe three inches from my chest. And my head was in an arc of machinery. It was a little claustrophobic at first, but I got used to it.

I laid there and watched Linda surf the web, checking out tote bag projects on Joann.com. She also spent a while chatting with another tech/nurse person. It was debilitatingly boring. Finally, after an hour and five minutes, the machine beeped, and Linda checked it. Nothing in the gallbladder. She had me lay there a while more and tried again. Nothing. She had me sit up for about 20 minutes, and she checked again. Nothing. She tried two other positionings... still nothing. She had me sit up for another 15 minutes. She tried all three positionings again and let me out of the contraption again. She said to go wait in the little waiting area in the hall while she went to show the radiologist my results. She said that they probably would not need to do the second part of the test.

While I was happy not to have the CCK and experience pain, I was thinking that this probably was not a good sign. The only thing I could think of was that the tracer hadn't made its was to the gallbladder, for whatever reason. Or that it had but was stuck in there.

After about 15 minutes, Linda came and got me to remove my IV. I was done. As she was removing my IV, she asked me again if I still had my gallbladder. Oh, my, that could not be good.

Linda said that the radiologist would take 3-4 days to review my scan and would let my doctor know, and my doctor, Dr. C, would call me. Remembering that the last time Dr. C was supposed to call me with lab results I ended up having to call her after a week and still not hearing back for another two days, I planned to call her on Wednesday.

Imagine my surprise when Dr. C called 20 minutes later. I hadn't even gotten home! She had me pull over to talk. There was no sign of the radionucleotide past my liver. Complete ductal obstruction. That's why Linda was asking if I had a gallbladder: nothing showed up there on the scan. Brother. Dr. C asked if I had had any more pain, and I really had had only minor pain since my last big episode, October 10. My fever was back all this week and I felt like my stomach was working something up the last two days, but nothing big yet. She warned that I might have another episode soon, if not from the obstruction then from the radionucleotide causing cramping. ?

Then she asked if I have a surgeon. Of course not... Why on earth would I have a surgeon? She had me take down a name and phone number. I have to call the surgeon on Monday. I still need to see the upper GI doc the day before Thanksgiving, since my reflux is still bad.

I wish I had asked if she knew why I had a total ductal obstruction. On the ultrasound, there had only been tiny gallstones. I guess the ultrasound could have missed something, or they may not have been as small as they seemed. I wonder if the CT scan should have picked them up. Anyway, there are other things that can cause a duct to be closed off, like the big casino. But I'm operating under the assumption that it's not that serious. What other assumption can I operate under and remain functional? There are other possibilities, too, but a nasty old gallstone parked in a duct is the most likely culprit.

So, as I mentioned before I'm coming out of a pain episode, which lasted about four and a half hours. I'm getting better at dealing with them, but boy, does time crawl by. At least I don't have to go to work tomorrow.

I put in a call to my dad. He's a nerdy physician assistant. I trust him more than most doctors. I do hope my doctor is a good one. At least she was observant enough to notice that my liver enzymes on the ER bloodwork were both over 300, which the ER doctor either overlooked or chose not to pursue.

Here is "me looking on the bright side:"

-I have great support from Laynie and Katie.

-I'm sure that the administrators and other powers that be, with both my employer and my current placement, will understand. (Not pay me for not working or anything, but at least not give me a hard time if I need to leave work with pain or take a few days off for the surgery.)

-I have excellent health insurance. Whew.