Why this page exists
How we got here

What happened in 2005 and 2004

PICTURES

LINKS

Gillette Children's Hospital Saint Paul Children's Hospital McNeely Pediatric Diabetes Center Juvenile Diabetes Research Fund Papa's Page
The Nevus Outreach Group

Tuesday, 13 December 2005, 0032

Glucose Correction Chart available
I don't know if there are any other parents of diabetic children reading this page. In the event they are, I've posted A sample glucose correction chart, in OpenOffice spreadsheet format. Feel free to download it, and use it as you will. Why OpenOffice.org format? Simple--it's free, platform independent, and it just plain works. Use it under Windows or Linux, it's all the same. Let me know if you've found it to be useful.
If you're just curious, and want to see what it looks like, you can look at thorwald's correction chart as of 12/13/05

Friday, 9 December, 2005, 1539

Movies of Thorwald online
Jose and Beth Nazario were kind enough to gift us with a Canon digital camera, when Thor was born. I thought it appropriate that I take a little movie of Thor today, and put it up.
This movie shows Thorwald diligently disassembling and sorting out LEGO bricks, and Shows more of the same, and Thorwald waves goodbye at the end. Please note, these movies are 50MB and 44MB respectively. They're big, they're high quality, and my upload speed is only 512Kbps. So, figure it's going to take a couple of minutes to download them, even if you have really high-speed internet. If you are on a dialup, don't even bother. Also, both movies are avi's, and I didn't have any luck getting the framerate or sound to display correctly under Linux with mplayer. Try windows media player. Sorry!

Wednesday, November 2, 2005, 2051

It's all good
The laser lightening has progressed well. So well, in fact, that we tend to forget about it. Many of the moles on Thor's face are now much lighter, and Dr. Wood has decided to hit all the moles, when we do the next surgery--which will be coming up in January.
Thor's A1Cs are quite good, as well. 7.2 at his last endocrinologist appointment, and we've got a new endocrinologist as well. I can't remember his name, but it is a wonderful Greek thing, which no one seems to be able to pronounce. I managed to pronounce it just fine, but have since forgotten in.
Thorwald's verbal skills are racing along. He's a complete chatterbox, and had a blast on Halloween. I'll get pictures of him in his Eeyore costume up shortly. His manners are quite good, as well, which is a big sticking point with me. I was offended when kids walked up to my door and said "gimme candy." For pete's sake, is it that hard to say "Trick or Treat! [pause] Thank you!"??
LEGO bricks are now on Thor's radar screen as well. He's happily shuffling through the giant tote of them, building little things, and ordering us to build him cars and buildings and trucks and cranes.
As for getting along with his little brother, we couldn't ask for a better relationship between them. Thor adores Gunnar, and refuses to go to bed until he's given Gunny rabbit a "hug and a cuddle and a kiss." What a great kid.

Monday, May 16th, 2005, 2202

...we will hold them hostage using the "laser" weapon...
Our first session of laser lightening went apparently okay. At 3 PM, Thor had a 5 minute session with Dr. Wood and the Alexandrite laser. They're still experimenting, so they zapped 4 moles on Thorwald's forehead, and one to the right of his right eye. 30 watts for the first four, 40 watts for the second. I believe the wavelength was 750nm. They're starting to scab a little bit, and it appears they'll peel right off.
Thor got good and worked up before, though, so we ended up using a mild sedative, something related to Alprazolam (better known as Xanax). I can't remember exactly what it was, though. This was all done at Minneapolis Children's Hospital, and our experience there was better than last time, but still not as good as our experiences at Gillette. The sedative calmed Thor right down, and we got to visit with Darla, the nurse who saw us when Thor was barely a week old, for his MRI. Darla reminds me a LOT of Lynn. I think it's just perfect that Lynn is going to be a nurse now, and oh, how I wish we'd had more people like her and Darla at our various stays. Don't let anyone tell you nurses don't earn their money. I have found the pediatric nurses to be a wonderful group of humans, and there's a whole gaggle of them over at Gillette whom we adore.
We were home shortly before 5 PM today, but we had some side-effects from the anesthesia--mainly just fussiness and rage. Didn't help that in the short stay recovery area they would let us touch anything, because they were being all histrionic about MRSA. Last time they checked, only his rectal swabs turned up positive for MRSA, so as long as we don't shove any legos up his rear, they've got nothing to worry about.
We had a great anesthesiologist, though I've forgotten his name--a very nice man. And Thor's blood sugars were excellent today, if a bit on the low side (58 at half-past noon, which led us to disconnect his pump for some time). All in all, we have high, high hopes for the Alexandrite laser, and what it may be able to do with mole/small nevi lightening. Dr. Wood has used the Discrete CO2 laser before, but the effects were not lasting. Oh! Also, the alexandrite laser will burn out the hair follicles in the satellite nevi, so wherever we zap the nevi/moles, the hair will stop growing, so at least those warts won't be hairy!

Wednesday, April 27th, 2005, 2130

New Nevus Site
I find that http://www.nevus.org has updated their page rather radically. They're a non-profit group dedicated to researching, curing, and finding a way to prevent giant congenital nevi. Overall, a nice-looking site. And certainly, a much better site than Nevus Network. Nevus Network is not an uplifting site, and their attitude is summed up for me by their picture of Sophie--a young child who had a nevus on almost her entire left arm. Take a look at the miraculous results from the use of tissue expanders.
Note that the caption on the second picture says "it is a myth that plastic surgery leaves no scars." Wow. I'm absolutely flabbergasted at the caption-writer's attitude. This is a classic example of ignoring the massive silver lining, and concentrating instead on the dark cloud. That nevus has been almost completely removed, and the scars will fade drastically over the next few years. Thorwald certainly has larger scars than the picture shown, and his results have, as yet, not been nearly as dramatic as those of sophie.
Speaking of this website's namesake, the little tyke is doing great. He's charging around the house, and has almost completely mastered the art of the yes-and-no question. Though, in good Norwegian form, he never says yes, but "ya." On May 16th, we're going in for our first session of laser lightning, using the Alexandrite laser. A quick websearch on "alexandrite laser dyspigmentation" on google will turn up several interesting sites. Though the Ota Nevus is not a giant melanocytic nevus (which is what Thor has), there is a fascinating article from the chinese medical journal on treatment of Ota Nevus with the Q-switched Alexandrite laser. Unfortunately, the fabulous results seen with the Ota nevus won't be seen on Thorwald's bathing trunk nevus, but we're aiming for the smaller nevi on his face (really, the size of large moles), and we hope to eventually tackle the one on his arm.
Since Dr. Wood is renting the laser (Gillette has yet to buy their own), we're a bit at the scheduling mercy of the laser owners. white paper on using the lightsheer laser for nevus removal. Interestingly enough, both the Q-switched alexandrite laser and the lightsheer system are use for apparently permanent hair removal as well.

Monday, April 10th, 2005, 11:58

Love that minimed!

We've had some more excitement. Thorwald's Paradigm 512 pump has once again failed to prime successfully. Actually that was last night. A quick call to the help line got them to FedEx us a new one, which should arrive tomorrow. Basically, it wasn't sensing any resistance in the insulin reservoir, so instead of a few drops of insulin coming out of the needle at the end of the infusion set (actually, the little plastic line that links to the canula which is resident in Thor's arm), a high-power stream of insulin shoots out.

It has not malfunctioned while attached to Thor, mind you. Well, we don't think so. Today, his blood sugar was well above 450 when he woke up, and that's just plain too high. Angela managed to sneak up on him with a syringe and 3.0 units of humalog, before I headed home from work to help her put in a new infusion set. We'd had some minor issues with this infusion set last night, and in retrospect, we should've swapped it out then. Live and learn, right?

We got the new infusion set in, and things seem to be working normally. It'll be nice to have the new pump, though. Minimed even let me know that I could get a Letter of Analysis from their QA team. Basically, they'll analyze Thor's old pump, and once they've figured out what's wrong, they'll tell me! I really didn't think they'd do this, but I'm so glad to hear that they will! I cannot imagine a company with better customer service than Medtronic Minimed.

Tuesday, March 29, 2005, 0615

All good news!
Thorwald is rockin' along, climbing stairs (up AND down, without really crawling), identifying letters, and starting to count! He can now count reliably to two. (Mem, Doo). It's not 100% yet, but I expect he'll be there shortly. As for letters, T G B and O are immediately identified by him, and he's working on a few more.
In terms of health, he's never been better. His 14-day BG average is under 200 and his 30-day averages is below 215. He's letting us know when he's under 100, and he's REALLY letting us know when he's over 250. So it has been a good month. No colds, no troubles of any kind. He's really growing, too. We can't seem to get his weight over 25 pounds, but he's thirty-five inches tall now, which isn't bad for a 20-month old. I can't wait until I can just know his age in years.
Also, the incisions from the last surgery are completely healed now. It's absolutely amazing how quick this kid recovers.

Sunday, February 20th, 2005, 2135

Blood-glucose under control
Thor's BG levels are much better now, but he's requiring QUITE a bit more basal than he used to. We're dutifully feeding him his prescribed antibiotics (Keflex), and his back is healing VERY quickly. There has been no drainage to mention, and there are no signs of fluid under the skin. He's doing great, though he's starting to discover the power of rage. :/

Friday, February 18th, 2005, 0704

Stand down from battlestations
We are safe and sound at home. We actually got home yesterday around noon. When I got home from work at 2100 hours, Thor was thrilled to see me again. It's so rewarding to have him come running from the other room, crying "Da da!" when he hears the side door.
He is recovering nicely, and back to his cheerful self. Angela and I cannot express how much we appreciate all the phone calls and emails. The medical staff made this a particularly traumatic stay (not Courtney or Nicki or Sara, though...those nurses are the best), and every little bit of encouragement is worth its weight in gold.
On the "normal childhood development" side of things, we've added a new game to our night-night routine. It's called "pick up the toys", and it's working wonderfully. In fact, when I left one of my books on the coffee table, Thor carried it over to his book shelf and set it with the other books to be shelved. He's happily picking up his Legos (thanks Jose and Beth and Mom and Dad!), and stuffing things back in his plush medical kit, and grinning from ear to ear the whole time. The other day, I had left my wallet on the coffee table, and he tracked me down in the office with it, angrily repeating "Dada!" This kid will get us organized yet!

Thursday, February 17th, 2005, 0810

Welcome to http://www.thorwaldgustav.com
Papa has finally gotten off his rump, and created the Thorwald Gustav Anderson update page. This is the first genuine entry on this page. All the others are cobbled out of things from Papa's page (available on the left hand side of this page). Some of the links are broken for now, but will be fixed as soon as possible.

Thursday, February 17th, 2005, 0751

Oh, sweet Irony, how we've missed you
After spending a fair portion of the day asking to be left alone to deal with Thor's diabetes, a funny thing happened. Our Anesthesiologist took it into his head that he knew more about endocrinology than we do. Truth is, he probably does. But that doesn't mean he handled it well.
After the surgery, the anesthesiologist (who will be named Dr. Vandelay--not his real name, but a Seinfeld-based made-up name) got it into his head that we weren't checking Thor's glucose often enough, and that it was too high. To be honest, Thor was at about 372. VERY high for an adult, merely high for a toddler. Do I like seeing it at that level? Hell no. But it gets there some times. All we can do is correct it and wait.
However, something happened then that we didn't know about. Thor got hooked up not to clean saline, but to a saline/dextrose mix. Dextrose is sugar. Since we didn't know about the dextrose feed, we didn't hook Thor's pump back up. Sure, through the night, Thor was eating and we would hook up the pump and correct for that, but that wasn't near enough to cover for the dextrose. So when we checked his blood sugar right before 9 PM, Thor was at 597. That's VERY high. That's alarming, if the glucose levels aren't responding to insulin, and if ketones are building.
We administered 2.0 units of insulin, and then Dr. Vandelay drops in. We had checked for ketones, and there were only traces signs of ketones--a sign that thor is not breaking down much body fat for energy. But Dr. Vandelay starts talking about "IV insulin feeds", "dropping the ball" "the big picture", and "this isn't working." To summarize, he was convinced that Angela & I had no idea how to manage Thor's diabetes, and that we were killing the boy.
Is a level of 597 dangerous? Yep. Will it kill a person in 5 minutes? Nope. We had administered a LARGE dose of insulin, given Thor's mass of 25 pounds, and the appropriate thing to do at that time was to wait and see if that insulin had any effect. Had we blindly done what Dr. Vandelay wanted, Thor would have crashed to VERY low blood sugar and probably crashed out.
This is why we had asked Dr. Wood NOT to send anyone in to talk to us about Diabetes. They fly off the handle, they're used to adults, they think that 2.0 units isn't much (for an adult, it's really not). Dr. Vandelay, meanwhile, started getting angrier and angrier. So did I. I don't respond well to accusations of endangering my child's life. I tried to remain calm. I said "We need to wait and see what this insulin does before we put more in." "This stuff is good for 2 hours. It's insanity to inject more right now." "High blood sugar won't kill him in 5 minutes."
Dr. Vandelay responded with: "I won't tell you what this is doing to the osmolarity of his brain." "I won't discuss this management with you." And off he went to call Dr. Wood at home. I feel bad that they called Dr. Wood, but he backed us, apparently. Because we DID get an apology from Dr. Vandelay later, but then we had the requisite consult from pediatriacs.
What did Pediatrics say, you ask? "You're managing this okay, but we want to get some blood tests. And we want to check his urine for ketones." Say, we JUST CHECKED HIS BLOOD FOR KETONES, with our own testing unit. I think we have this in hand.
Basically, some doctors assume anyone without an MD is an idiot. And for some reason, Dr. Vandelay thinks we DON'T have our son's best interest at heart. He may worry about patients, but at the end of the day, it's us: Angela and I, who go to bed every night knowing that we are responsible for ANYTHING that goes wrong with Thor's bloodsugar levels.
In view of that, this entire incident is my fault--I never read the IV bag they hooked up to Thor. That will NEVER happen again. If this anesthesiologist acts up again, I WILL post his name here.
When I left after midnight, Thor was down in the mid-300s again, and Angela was continuing to correct. In the future, I will be far more aggressive with anesthesiologist, and with getting rid of them before they can throw gasoline on a fire. Did spiking our bloodpressure REALLY help Thor last night? NOTHING we did as a result of his hissy fit was anything different than how we would have normally handled things.

Wednesday, February 16th, 2005, 1611

All right you expanders, EVERYBODY OUT!
Dr. Wood just stopped in to let use know the scoop. The expanders have been removed. There wasn't any pus, but there was plenty of cloudy fluid around the expanders. He is quite confident that it was MRSA, though the labs have not yet returned. Dr. Favel, the infectious disease specialist may stop in to talk to us later. In situations such as these, removal of the expanders, no matter how bad the infection, almost always cures things.
Still, we'll (and by that I mean Angela & Thor) will be here overnight for antibiotics, and to keep the wound covered with clean dressings. As Dr. Wood said, this will be a mess to clean up. He made two one-inch incisions, and left them a bit open to allow for better drainage. This will apparently drain for some time. I'm guessing it should be mostly done in two to three days, though we weren't given a time frame, and I didn't think to ask.
We aren't going to think about expanders for another six months. The doctor said that the wounds were actually healing acceptably, but it appeared that the tissue was seeded with MRSA. He's fairly sure that waiting another six months will give Thor's body time to heal and clean out the remains of the MRSA.
In the meantime, we're going to try some laser lightening of the nevus. That doesn't require full anesthesia (just enough to make Thor docile. Oh, wait, that'd be full anesthesia, I guess), and won't require either a hospital stay or antibiotics. They're still at an experimental stage with this at Gillette, but we've volunteered Thor for trials. Since the laser they need is about $130k, they want to make sure it works before they buy. So we'll almost certainly be working with a borrowed or rented model.
In a short bit, we'll go into recovery and pick up Thor. He'll be groggy and cranky, but it'll be good to hold him again.

Wednesday, February 16th, 2005, 1545

Into surgery
Thorwald went into surgery at 1515 hours, on February 16th, 2005. The surgery was exploratory, to check for existence of MRSA in the infection surrounding the tissue expanders which were put in on January 31st, 2005. Robert Wood is the plastic surgeon doing the work, and as always, we're confident his work will be excellent.

Tuesday, February 15th, 2005, 2218

Oy.
Figured I'd update the old blog with our latest bout of bad news. When I said that Thor had gotten an infection, I guess I wasn't kidding. I've never seen our Surgeon look so vexed as today. Two weeks with no sign of infection, then overnight Thor has swelling, a fever of 102F, and great discomfort.
Dr. Wood is pretty sure it's MRSA, and this means a radical change in what we've been doing. At 1515 hours tomorrow, Thor goes back into surgery. Dr. Wood will take a sample of the fluid in the infected area, and have it cultured immediately. If it's MRSA, the expanders will be considered compromised and will be removed immediately. Thor will then spend the night in the hospital, getting IV antibiotics. We're then looking at a 6 to 12 month break in treatment, while we let Thor heal, and let his immune system slowly and surely wipe out this MRSA.
Turns out that Thor's nasal culture turned out negative for MRSA, but his rectal culture tested positive. That means this is almost certainly MRSA rearing it's ugly head. Thor is a little uncomfortable right now, but the Tylenol w/Codeine is helping out.
On a tangentially-related topic, if you're looking for someplace you can get rid of some new toys, consider donating some to Gillette. A lot of the kids who go in don't have a lot of extra money, and a new toy is a wonderful thing. Even for the kids whose families DO have money, a shiny new toy can really distract them from the fact that they're in the hospital. Last night, for example, I bought Thor a Hot Wheels car. Ja, Ja, I know, he's too young for them. But he doesn't play with them unsupervised, and he NEVER puts stuff in his mouth. But I digress.
Today, Thor was understandably upset in the doctor's office. Elizabeth from Child Life was there, blowing bubbles at him, and it just wasn't taking. He was paying a little attention to the Hot Wheels car, so she bounced into the other room, and came back with a brand new one for him! That helped a lot. It turns out that somebody called the hospital a while back, and wanted to donate Hot Wheels cars. What they didn't tell Child Life was that they were actually cars attached to books. According to the publication data on the inside cover, the books are produced by a publishing company in St. Paul. My guess is that these were merchandise that didn't sell as well as they'd have liked, or that was overrun, or somesuch. I'd list their name here, but it's entirely possible that they could get in trouble for doing this. Weird, but if Hot Wheels got crabby about a bunch of cars being _given_ away, they could dump this company as a publisher. Anyway, I have to say that I think this company did a wonderful thing, and if you work for them, and I can use the company name, I'd really appreciate it. People should buy more of their stuff, because they COULD have just thrown it in a dumpster.

Tuesday, February 15th, 2005, 0733

All is not well in paradise
You wouldn't know it from this blog, but for the most part, Thor's medical procedures are VERY routine. Of course, what I'll say next will convince you of the opposite.
Thor's right-hand incision is infected. I went home early yesterday, so I could go see the doctor about what I thought was a sinus infection. Turns out to be mere sinusitis. I got some Flonase to get it under control. But when I got home, Thor was still napping, and it was VERY hard to wake up him up. Then, he was extra clingy with Angela. Normally, this wouldn't be an issue, but Monday is her lesson night--she's got students coming to the house for Oboe and Piano lessons. Needless to say, a toddler standing at the gate to the basement stairway, screaming "MAAAAMAAAA!" can be a bit disruptive.
I noticed that he seemed to be in discomfort whenever I moved him--which is HIGHLY unusual. This is a kid who LOVES to be tossed into the air, and spun around, and any other generic disorientating activity.
Sure enough, when I pulled up his shirt, the right-hand incision was swollen, red, and showing some signs of pus beneath the skin.
He was scheduled for an expansion today, at 1530 hours, but that'll be shelved, I'm sure. We'll still go in and let Dr. Wood look at it. We'll get an Rx for some new antibiotics, I'm sure. We'd kept the antibiotics from his surgery, and they haven't expired yet, so we started him on those last night. Once he got a little tylenol with codeine, he bucked right up, and slept the night away. He's still asleep as I write this.

Monday, January 31st, 2005, 2022

Safe and sound at home
Dr. Wood was kind enough to let us come home tonight, so Thor is back in his element again. He's dealing with the anesthesia better than he did last time, and Thor got to see Nurse Nikki today, so that perked him up. Unfortunately, Nurse Shell was so busy we didn't even see her today. But we had a nice anesthesiologist (a gent we've had before, though I've once again forgotten his name), and everyone on the care team was great.
Surgery was uneventful, and about forty minutes long. Thor now has TWO expanders in place, one of which is intended to bring the nevus down on his right flank.
Probably the most interesting portion of the day was noticing a gentleman with a Blomkest Fire Department jacket in the waiting room. Turns out that it was the son of one of my dad's friends. I can now say that Dr. Wood is the official pediatric plastic surgeon of Whitefield Township--after all, he's now operated on grandchildren of two of the three-member township board! We had a nice talk with the father of that child (I'm leaving names off, because I respect their privacy), and it was good to talk to him again. It's probably been sixteen or eighteen years since we've seen each other, and the Fireman and I were never good friends. We went to different school districts, though we only lived a few miles apart.
Anyway, Thor is in the living room, saying "Da da! Da da!" so I think I'll wrap this up, and go see the kid. In two weeks, we go in for another expansion.

Monday, January 31st, 2005, 0646

D-Day
Thor's official surgery time is 0800 hours. He's still sleeping. We just snuck downstairs and showered, and we'll have to fetch him momentarily.
New expander today. We're on the short side of the tissue expander journey now. I expect we'll be done with surgeries inside the year, perhaps after only two more sets of expansion. We'd keep going, but we're rapidly approaching the point of diminishing returns. With luck, I'll be able to find a wi-fi hotspot in the hospital. But if not, and if I can't hijack a connection anywhere, I'll update late tonight when I get home.
We're hoping to NOT spend the night, but I fear they will want to keep Thor overnight. Hopefully, we'll be on 4-South. The girls on 4-west are REALLY nice, but Nicki works on 4-South, and Thor LOVES Nicki. Come to think of it, he hasn't met a Nicki he hasn't adored. Of course, I think every Nicki he has met has been very attractive, but _still_. Whether it's the daughter of a consulting client of mine, or a nurse, or some teeny-bopper sitting at the restaurant table next to us, it's all the same. He smiles, he turns away, he makes eyes at her for as long as he can see her. I foresee some late nights in my future...

Wednesday, January 12th, 2005, 0741

Surgery: January 31st
Thorwald is going in for the next set of tissue expanders on Monday, 1/31! Exciting stuff, particularly now that the end is in sight. He's completely recovered from everything now, but appears to be making more efficient use of his insulin, somehow. We've had to drop back his night-time basal rate to almost nothing. I think that for a few hours a night, we'll have to set the rate to 0.0 units. Currently, it's only at 0.05 units from about 11 pm to 8 AM. This is about a third of what he was getting before the virus. Funky stuff.

Sunday, January 9th, 2004, 2125

*SIGH*
Well, we've survived this years only (I sincerely hope) bought with something akin to rotavirus. No sooner did Thor and I get over our big Xmas cold, than he came down with something nasty. He had almost three days of vomiting, and a week of the runs. Poor kid. He's feeling better now, and actually eating again. We were having a blast keeping his blood sugars high enough to be safe. Thankfully, Angela managed to avoid getting it, but alas, I did not.
I'm FINALLY feeling better, after missing Thursday and Friday at work. Did I think I was behind before? Heh. Anyway, it's amazing how people at work react when you tell them you aren't coming in, because you're "...just waiting for the vomiting to start." Yarg. Man, I tell you, you just don't look at a Wendy's Spicy Chicken sandwich the same way after you've seen it come back up. Ooof. As if fast food wasn't bad enough the FIRST time.
I've gone and registered thorwaldgustav.com. I need to find some PHP-based blogging software, so that Angela can do updates on it. Then, we'll move all the kid-based stuff there. Nice and simple, eh?
We met with Dr. Wood again, and got some mixed news as towards future surgeries. The good news is that Thor's scarring is minimal by anyone's definition, and we've had really good success so far. Dr. Wood believes he'll be able to get the nevus lower on the back and the sides, and maybe a little in the front. The legs, however, are a no go. He does not believe that tissue expanders in the legs will be anything approaching successful.
The upside, however, is that they're doing experiments with a new laser-lightening technique. They don't believe it'll reduce the eventual chances of cancer, but in terms of cosmetic effects, they have high hopes. Mind you, less than a year ago, Dr. Wood said he'd never been impressed with laser therapy before, so this goes to show how quickly advances are coming.
I still think the eventual answer will be cloned stem cells, laid down in a polymer framework to grow new skin. Recent work by Medtronic (in the realm of heart repair) lends credence to this idea. Of course, we have to wait for a new President. I DID hear, however, on MPR that a recent UN scientific envoy to China had this to say:
"In the west, we're talking about stem cell research and stem cell based cures. In China, and in SouthEast Asia, they're banking on it. Where the west theorizes, the East is trying."
Big news, and good stuff.
Christmas was, as always, great. I hope yours was as well.

Friday, December 4th, 2004, 2219

Updates
Thorwald is doing fabulously. We're on a break from surgeries right now, which is nice. He's taking the time to grow and learn a few new hobbies, like walking and talking and picking up some sign language. He's signing now for milk, and he can ask for crackers, and come about 2030 hours, he's hanging out by the door to his bedroom, wanting to call it a night. Hell of a kid.
We'll pick up the surgeries again shortly, but Dr. Wood has done excellent work so far. That's a terrible understatement, by the way. As I am exposed to more and more medical professionals, I find them to be humans, as flawed as the rest of us. But Dr. Wood, and his Nurse Practicioner, Nurse Shell, are two of the kindest, most genuine, and highly skilled individuals I've ever met. Over the years, I've met some master craftsmen in various trades. I have found all of the great masters to be humble, somewhat self-deprecating and kind. Hubris and arrogance are almost always the mark of the poseur and the fraud. Nurse Shell and Doctor Wood are master craftsmen in every sense of the term.
On other fronts, I've registered thorwaldgustav.com (thorwald.com was taken). I'm planning to shift over all the Thorwald related things to that site, and set it up so Angela can make updates to it. I'll, of course, do this in my copious free time.
Anyway, yeah, I'm kind of busy these days, which is why the updates are so few and far between. I always update when something bad happens with the kid, so if you don't hear anything, you can know that Thorwald is doing well, running us ragged and eating like a horse. Did I mention that he's sleeping 12 hours a night now, and napping to boot. He makes up for it by charging about at Mach IV for the rest of the day.

Wednesday, September 22, 2004, 0552

Paging Osmosis Jones, Paging Osmosis Jones...
Thor's got an infection. The incision has begun to weep for about a 4cm chunk on his abdomen. Angela had him into the doctor on Tuesday, and they prescribed Keflex for it. This is good, because that means they're darn sure he isn't having more problems with MRSA. It's bad, though, because if it is MRSA, then the keflex will be useless, and the Staph will have more time to colonize the little guy's body.
He's not sleeping well because of the infection. He woke up with wet PJs at about 0430, and Angela took care of him, and checked his blood glucose, which was at a dreamy 177. But he just couldn't get back to sleep. He'd drift off, then cry himself awake again. He was breaking my heart, so I got up a little before 0500, and held him and rocked for about 50 minutes. He finally drifted off in my arms, so I put him back in his crib. It breaks my heart when he's in pain.
Angela & I have been married 9 years today. Woo woo!

Sunday, September 19, 2004, 1722

Thorwald is doing well
On September the 13th, Thor had his expander out, and an abdominoplasty done. They basically stretched the skin down below his belly button, nearly two inches. So he is now the first member of my family to ever have had a tummy-tuck. He recovered from the anesthetic very quickly, (really just a few hours) and there have been no complications, despite the fact that he really has a full-circumference incision. Once again, Dr. Wood has done some absolutely magical work. We've had to stop putting infusion sets into his abdomen, due to the abdominoplasty, so we've been putting them into the backs of his upper arms, over the triceps. That's worked pretty well. By the middle of the coming week, we should be able to move the sets back to his abdoment.

Wednesday, September 8th, 2004, 1821

Thorwald (and a quick reminder for me!)
Thor had another tissue expander put in over six weeks ago, and it's gone fabulously. It moved a little, but not so that it was expanding nevus. It's now the size of a 16oz coke bottle, so we'll see excellent results very shortly. I'm going to take a picture of him, probably tonight, and post it. He's a little trooper! No signs of infection, and no signs of discomfort, though he wasn't thrilled with our long drive to and from Sioux Falls, SD this last weekend.

Wednesday, July 28th, 2004, 1841

Anyone else been busy?
Oy, we've been busy. That's why there have been no updates. Here's the news so far:
  • Thorwald got a new tissue expander put in. It's a much bigger expander, and it's got the expansion port directly on top of it. We actually use a little magnet to find the port. This makes it VERY easy to properly apply EMLA to the injection site.
  • Thorwald's surgery was 2 weeks ago, on the 12th or 13th. He did well, but it was much harder on him than previous surgeries had been. It was really about 30 hours before he was feeling like himself again. But he's a hellion again now, that's for sure.
  • Thorwald got expanded on Tuesday, and Dr. Wood was so pleased with how things are looking that he said "Well, we'll want to see you at least once a week." Whoopee! Maybe we can get 2 expansions per week from the get go.

Monday, July 5th, 2004, 2142

Light at the end of the tunnel
In Thorwald news, he meets with his endocrinologist this week, and his plastic surgeon again. He's healed nicely from his last surgery, and we'll begin a new course very shortly. As for the endocrinologist, we've been having absolute joy with the pump--it's fabulous when it works. But we've had issues with the infusion sets. He's an active little boy, and he's been kinking the canulas and whatnot. So his bloodsugars have been plenty high lately. We'll see if the pump will work out in the longrun or not.

Friday, June 25th, 2004, 1414

Insulin pump, infection, et al
Well, we've started using the Medtronic Minimed Paradigm 512 pump. Very, very nice. It doesn't automatically measure blood sugar levels--if it did that, it would be called an artifical pancreas. But it does store a large amount of insulin, and it can disburse it very quickly, and without separate injections. Basically, we put a flexible plastic infusion set into his belly and the insulin is administered through that. We have to replace (and move) the infusion set every 2 days. Otherwise, the body can start interfering with the inflow of insulin.
Unfortunately, for the first few days of the pump, we have to monitor his blood sugar REALLY closely--checking every 2 hours at least. So we're a bit sleep deprived right now. But we're coping. The cool thing is that we now have a remote for Thorwald, so that I can feed him, put him down to play, and administer his insulin from across the room. The remote looks just like one of those fancy car thingies that you can use to unlock doors remotely. Very simply to use, and the pump is a marvel of technology.
Thor is doing pretty well, but the incision from surgery a few weeks ago (feels like a decade) has gotten infected.
It's not MRSA, thankfully, so we can use regular keflex antibiotic, administered orally. The infection looks to be getting better, but it did engender a quick drive to Gillette yesterday, so Dr. Wood could look at it personally. That guy is one hell of a doctor. I can't recommend him highly enough.

Tuesday, June 15th, 2004, 1212

All quiet on the western front
Things are generally well here. Thor is healthy and happy again, and I'm trying to get our education class scheduled for the insulin pump. Apparently its complex enough to require education. Hmph.
We found out what the infection was, in thor's back: Methicillin-resistant stapholococcus. I'm sure that's spelled horrendously wrong. Anyway, this staph is resistant to almost all antibiotics. But, they're quite sure they got it all out during the surgery.
Last night was fairly sleepless. For some reason, the poor kid's blood sugar skyrocketed to > 600, which is not good. He woke up sobbing at midnight, having over-saturated his diaper again. It took us a solid hour of soothing before he went back down. So, we're both a little wiped out today. Angela, as usual, handles sleep deprivation so much better than I do. I'm a wee bit crabby, methinks.

Wednesday, June 9th, 2004, 1337

...where never is heard a discouraging word...
Home and napping happily. Thor will get antibiotics for the next ten days, and a checkup on Friday and next Tuesday, to ensure that nothing is going south, but so far so good.
Once again, the kid apparently feels no pain, which really helps. If he was just lying around moaning, like he did with the cochsakii (???) virus (a relative of hoof and mouth disease, apparently) that he picked up this last weekend.
This kid doesn't get sick often, but when he does, it's a doozy. Nurse Shell suspects that the virus may have lead to the infection. Argh.

Tuesday, June 8th, 2004, 2231

Heading out of the woods
Thor came through his surgery with flying colors. The expander is gone, so is part of his nevus, and the infection is apparently history. I swear, that kid is bucking to be a Marine: by six hours after his surgery, he was pulling himself up on the crib, babbling, and generally being in good spirits.
Both of the nurses we had on our last Gillette stay stopped in to say hi, which was really sweet. Gillette Children's Hospital is...well, absolutely amazing in my book.
He _did_ yank the IV out of his leg, so he's on oral antibiotics now, instead of IV. You'd never know he had a massive infection this morning. Angela is spending the night at the hospital, and I'm home to keep the dog company. Heavy thunder and lightning is convincing me that it's not a good time to walk the poor hound :(
So now, we have a six week break or so, and then we do another pair of expanders. I certainly hope the next batch works out better than the last!

Monday, June 7th, 2004, 1419

Impatient little bugger
Thorwald apparently didn't want to wait until 6/24 for the removal of his expander, since his primary incision has become infected, and is indeed weeping right now.
We've moved the removal date up to 7 AM tomorrow morning (which means we don't have to be there until 6:15 AM, so we should get to sleep until 5 or so), and I'm off to Target to get antibiotics as soon as I get the word that they're ready.
On the upside, the two expanders are already at capacity. The small expander is 140cc, the big one is 260cc, and they're both full. Now, that's not the limit of expansion, though--each will safely go to double capacity, and we had 6(!) more expansions schedule, each of which was usually putting 50cc of fluid in, which means we would have almost doubled the amount of good skin as compared to today. But, one takes what one can get.

Monday, May 24th, 2004, 2253

Ever wanted to see an expansion?
We finally got pictures of Thorwald's expansion as it took place. click here to see them. Starting this week, we're moving to two expansions per week. With luck, he'll be done with the first expander come his first birthday. But I think the surgery will have been so close that he won't be able to swim at the Koenig's annual 4th of July party :(

Wednesday, May 19th, 2004, 2201

The MegaConglomerate that _cares_
That sounds far more facetious than I had intended, but what's a guy to do? Medtronic was kind enough to send a cute little stuffed monkey in the mail (FedEx, actually). They put a nice card in, too. This was all courtesy of Ken, our neighbor who is in the upper levels of HR at Medtronic. Nice guy, too.

Thursday, May 13th, 2004, 2111

A truly outpatient procedure
Thorwald's outpatient surgery actually didn't require an overnight stay! Angela and Thor are comfortable at home, while I teach my final class.
I had a very interesting conversation with a fellow teacher (one with whom I don't chat often), and really gathered that they envied me for returning to the private sector. I suspect that this individual's life hasn't been everything they wanted, and that they often took the safe course of action rather than a risk. I wouldn't exactly call myself a risk-taker, either. Truth be told, I'd probably have taught for decades upon decades, if I hadn't been laid off.
Now that I've been laid off, though, I'm looking at the private sector in a new light. Higher wages, fewer nights working. Benefits that are damn near as good as what the state is currently offering. I'm still interested in the teaching job at Century College, mind you. It would simplify life for the next year, since benefits wouldn't change while we get Thor's medical issues sorted out.

Wednesday, May 12th, 2004, 1014

Does anyone remember sleep?
We've received the insulin pump now, but we're missing some piece of it, so we won't be getting trained on its usage this week after all. Also, this is a good excuse for Angela & I to get some rest! Before the kid, I was always a solid 8-9 hours of sleep a night guy. But Thor is up at 7 AM sharp (except on days when he wants a bottle at 4 AM, like today), and I'm lucky to get home before 11 PM when I have a night class.

Monday, May 10th, 2004, 1644

Life begins to return to normal
Angela is finally feeling better, and actually got to enjoy a mother's day steak at her parent's place last night. Thor is back to his waking-up-like-an-air-raid-siren normal state.
My mom is fighting the rotavirus now, and I seem to have escaped it so far, thank Cthulhu.
Thor is back to Gillette's Children's Hospital this week, for an outpatient surgery. The expanders in his back have become free-floating, which is really interfering with expansion. So on Thursday, Dr. Wood will reopen the small incision through which they were inserted, and will stitch the ports into place, using absorbable stitches.

Thursday, May 6th, 2004, 0828

Plague House
Angela has the rotavirus now. So far, I have escaped it. I hope my luck holds. Thor is doing okay so far, but is struggling with low blood sugar (down to 55 about 15 minutes ago). We're going to have to cut back on his Lantus dosage. It's dropping him too low over night. Plus, we're in the honeymoon period--when his pancreas temporarily catches up. Soon, it'll give up the ghost and then he'll be entirely dependent on injected insulin.

Wednesday, May 5th, 2004, 1709

...where the deer and the antelope play...
We're finally home. Thor's diarrhea mostly cleared up around midnight last night. Things are improving readily! So they cleared us to leave today, and then we finally got our diluted insulin, though that was quite the problem leaving the hospital with it.
No sooner did we get the insulin, than our nurse took it away to go "verify it", and was gone for fifteen minutes. In fact, she took it into a room that was infected with rotavirus! I was a little brisk with her about that, but she swore it was in her pocket the whole time. I don't really care, since the sign on that room's door said clearly: Do not take non-essential materials into this room. Was it infected, probably not. Was it an unnecessary risk? Definitely.
But we're finally home. I actually got my lawn mowed, and the kid is keeping down food. We had an atomic blowout, but thankfully I didn't have to deal with that. The kid nuked his outfit and his high chair, and from there it was straight into the tub. Fact is, we were intending to give him a bath last Thursday, and before we did, we got scared and ran him into the doctor's office. The rest is history. So, basically, he was a little ripe already.
The kid is doing great. He's playing with toys, and babbling a bit again, and incredibly interested in anything I have in my jacket pocket.

Tuesday, May 4th, 2004, 2316

Gotta love IVs
Thor is spending his fifth night in the Hospital. They disconnected him from the IV earlier today, and he started going down hill. He was just losing fluids in his stool faster than he could replenish him. I was long gone, off to teach class--my second to last lecture at HTC.
My parents are back here, helping out. Angela has been actively running off nurses and doctors. They have this wonderful habit of waiting until he's been asleep for ten minutes, then wanting to wake him up to listen to his breathing. I suspect that Thor was contaminated by a nurse who inadvertantly carried the rotavirus in on her stethoscope or name badge or something. Yep, I said "her". I know there are male nurses, but I haven't seen one at St. Paul Childrens.
I figure the source of the rotavirus is the poor kid down the hall from Thor's room. That kid was marked with a Biohazard tag on the door when we got there last Thursday, and they're _still_ having problems. I really feel for that kid. I hope they start feeling better soon!
Thor is done with vomiting, it appears. He's keeping food down, but unfortunately, it's flowing right out again. The Saline in the IV is keeping him hydrated, but it's so hard to see him with an IV jammed into his scalp. That's better than the alternative, though.
I guess while I was teaching class, Angela ran into the mythical Nurse-Who-Does-Things-Quickly-Or-At-Least-When-She-Said-She-Would. I never would have believed that such nurses exist. After all, pretty much every nurse we've had so far has run off to get Thor's insulin, and it takes them 25 minutes to return to the room. The WonderNurse, however, can apparently leap tall buildings in a single bound, run faster than a locomotive, and STILL go straight to the medicine locker and come back with no intervening stops. I am told she is an older nurse, so I suspect that her efficiency and time-management skills come from a lifetime of experience and practice.
On another topic, I'm about ready to strangle the Nurse-Educators. Thorwald needs diluted insulin. Basically, he needs so little insulin that it is hard to measure out the proper amounts. As I said a few days ago, a "unit" of insulin is 1/100 of a milliliter. Well, Thor usually needs 0.5 units. Okay, so we're going to mix the insulin with a dilutant. So the final result will be a 10% mixture. That is, 10% insulin, 90% saline or something. Well, the most senior of the Nurse-Educators was by today, and after about five minutes of her, I had to leave.
That woman was absolutely incapable of figuring out how a 10% solution works. I mean, she started saying that "100 units is 1 unit". Uh, lady, you left off some important parts of that sentence, thus rendering your statement into gibberish. A better way to say that would be "100 units of the mixture contains 1 unit of pure insulin." When I asked her if that was the case, she said "Oh, no, no, no, that's not right at all."
Translation: She couldn't find her ass with both hands, a map and a flashlight. She has no clue how this diluted solution works. What if I wasn't a math guy? I'd be confused as hell. Tomorrow, if she pokes her head in again, I'm going to tell her to go away, right it all out, and I'll review it for clarity.
On a frightening side note, the parents of another diabetic boy prevented a major incident a few days ago (they're safely at home, not infected rotavirus now). The nurse drew up 6 units of insulin for their 4 year old--even though he'd been getting 2-3 units at every previous time. The mother argued with the nurse that she had too much, and the nurse assured her that the boy really did need 6 units. The mother told the nurse that if she tried to put 6 units into the boy, there'd be a real problem, and that the nurse needed to verify the order with the doctor. This continued for several minutes before the mother ordered the nurse out of the room. Sure enough, the nurse checked with the doctor, and she was wrong. Apparently there's been some miscommunication, and the boy _was_ supposed to get 2 units only. *phew*. Hypoglycemic Seizure, anyone?
StPCH does a good job overall, they really do. Some of the Nurse-Educators are idiots. The social worker they sent in to "help us with our feelings" did help us with our feelings: she generated a common wish among all of us: "Where the hell did this wingnut come from, and why won't she LEAVE?" That screwy woman hung out for more than an hour, preventing Angela and I from getting a meal. But that was on Friday or Saturday, so it's all water under the bridge.
We have our own biohazard sign on the door now. The joy of rotavirus (the tests confirmed it early this morning). It spreads primarily by fecal-oral contact, so hold off licking any used diapers. With kids, it's nasty, because they don't wash their hands well enough, and they constantly contaminate themselves. So the nurse who brought the rotavirus in (Thor most likely did not get it from a nurse, but from a toy in the playroom) wouldn't have realized what she was doing--even if she washed her hands REALLY well, that wouldn't have prevented the infected child from touching the nurse's stethoscope. And where do you think Thor puts the nurses stethoscope? Straight in his mouth, of course!
I'm off for some sleep.
Thank you everyone for the kind emails! It's been really wonderful to hear from everyone, and email is so great because it requires so little personal energy. Phone calls are wonderful, and I don't want anyone to hold back from calling. But at half-past midnight, I'm too tired to talk to anyone. A nice email, on the other hand, I can read and feel...well, loved. Thanks everybody!
Angela isn't checking her email too much, because she's not home that much, but she does check it. She'd love notes sent to angelar at angelar.com . She's been an absolute pillar of strength. My advice to pretty much anyone these days: Don't mess with mama! She'll rip your spine out and show it to you before you fall down, Bruce Lee-style.

Monday, May 3rd, 2004, 2247

Another Day, Another Emergency Room
Thorwald apparently has the flu, since he spent his few hours at home vomiting. He actually woke up vomiting at 0230 this morning. This, of course engendered a rather hurried and worried visit to Southdale Peds. His fever peaked at 102.5 at about 1030 hours, but by noon he was down to 101.7.
It took Dr. McEvoy an hour to respond to Dr. Lawler's page (she is such a sweetie--if we couldn't go to Dr. Tamte anymore, she'd be our first choice). Anyway, they agreed that we should go back to Saint Paul Children's Hospital, for IV fluids. Thor was down a pound from sunday's weight (which happened to be 20 pounds, ten ounces). We did manage to get most of a Pedialyte Freezer Pop into him, and that stayed down.
The really good news is that his blood sugars have remainded stable and in the 120 to 210 range, which is great.
Next time you're at StPCH getting an IV put into your infant, ask for Kathleen Quinn by name. She was fast, efficient, gentle and kind. She also drew enough blood for a couple of tests that hadn't yet been ordered--checks for aerobic & anaerobic organisms such as rotavirus. Now THAT'S planning ahead. Even though we'd gotten to Southdale Peds at 1030, it was 1415 before the IV got started.
About the same time the IV got started, our planned afternoon at the ER became one to two more days at stpch. Rotavirus, they said. According to the CDC only 1 in 40 children are hospitalized for it. Thorwald is definitely an exceptional kid.
We had a different Resident this time, and they threw in a med student for no charge. Though the labs hadn't gotten back by the time I left, Everyone was pretty convinced that it actually was Rotavirus. Thankfully, Thor had taken a total of 18 ounces of Pedialyte by 2130 hours, and had kept it all down. He was sleeping soundly when I headed out, but I know they woke him right after 2200 hours for his Lantus.
StPCH has a nice family resource center, where I was able to check out a nice IBM Stinkpad, for checking email from home. Unfortunately, the only access available (outside of the FRC itself) was dialup. I'd forgotten how slow it was. Thankfully, I could get to email through Squirrelmail, running on my mail server, and I could also install putty for ssh access, so I could get some stuff done.
I'm wiped. Angela and I figure that we slept from 2300 Sunday night to about 0230 this morning, then again from 0400 to 0630. She'll sleep like a log at the Hospital tonight, and I'll sleep like the dead here. Lately, I haven't even been rolling over in my sleep. It's kinda creepy to see the imprint I make in the bed, and how the covers are completely undisturbed a couple of inches from me.
The Hospital staff figures that Thor probably picked up the rotavirus in the playroom adjacent to our room--which is, ironically, the same room we were in before. There is no common staff, however. A familiar face would have been nice, but the only person who was on duty both this weekend and today was Dr. McEvoy himself, and he's a rather busy gent.
Thor was feeling MUCH better by this evening already. We're still unclear as to whether or not he'll be spending Tuesday night at StPCH or not. Whatever. It'll be nice to be able to spend some time at home again, instead of just coming home to shower, shave and sleep.
On the upside, I know the 7th Street/Walnut/Chestnut area in Saint Paul pretty well now. If Angela could keep from being run over by distracted Asian women in Beige Toyotas, it'd be a real nice place. (Angela is fine, by the way--the driver stopped the car after bumping Angela hard enough to shake her, but not hard enough to hurt her. Then the driver rabbited on out of there. Unfortunately, the cops didn't catch her. That was Saturday night, btw)

Sunday, May 2nd, 2004, 1829

Home, home on the range
We've finally made it home again. Thor's blood sugar has stabilized greatly, but until we can get either diluted insulin (which is apparently rarer than a left-handed monkeywrench), or a pump, he's going to be yo-yoing a bit. Right now, because he's so small, we're needing to give him truly miniscule amounts of insulin (humalog, for those who are curious)--doses like 0.5 units, where 30 units == .3 cc. So lets see, by my guess that means there are 100 units to a cubic centimeter, and we need to give him half of a unit, so that means he needs about 1/200 of a cc (or milliliter, same thing, really), or .0005 cc. That's a small amount to measure out.
Thankfully, he's getting an even two units of lantis every night, and I can measure two units. It's the quarter and three-quarter amounts that are damn hard to measure.
He's finally napping--when we got home, the dog went off like a bouncing betty and snapped the poor lad awake. So we played, and he giggled again--something he hasn't done in a week, and finally he had a bottle and crashed. So up he went. We're debating whether or not we'll wake him up for a bottle in a few hours. Angela's parents are bringing KFC over, so we'll get a meal shortly.
My parents and her parents have been insanely helpful. Since they both babysit, they were kind enough to attend all three days of education at St. Paul Children's Hospital. My sister, bless her heart, drove up for as much as she could. So we're all briefed on how to figure insulin, how to give injections, how to measure blood sugar, and what to do if he goes hypoglycemic. I'm looking forward to the pump, though it's going to end up costing us about $1200 after insurance. Turns out my plan has a straight 80/20 rule for diabetics, but there is an out-of-pocket maximum, and I think we may hit that this year. That is, of course, if diabetic supplies are not excluded from the out-of-pocket max rule. Incidentally, Thorwald will be the youngest patient they've ever fitted with an insulin pump. We'll be getting a Medtronic Minimed Paradigm Model 514. The kid will have a wireless remote through which we can administer his insulin! I'll write more on that once we're using it.
Saint Paul Children's Hospital is a wonderful place. I know some of our experience was because they actually _know_ something about Diabetes (not our prior experience with Thor's bathing trunk nevus). Everyone was very knowledgeable, and most had personal experience with Diabetes. We learned a hell of a lot, and went from feeling a wee bit overwhelmed to ready to deal with this. I'd rather that we hadn't had to talk to a social worker. I mean, when you've got BOTH sets of parents attending all the education, wouldn't you think that they'd get the clue that we _have_ a support network already?
But I digress. I'm already looking at what I can do to actually be productive, and I think that Mike Schwarz and I (yes, we collaborated on Multitool Linux) are going to start cracking on some PalmOS app for diabetics to track bloodsugar. It may eventually grow into a Zaurus or laptop linux app as well. Basically, with a $30 cable from LifeScan, we can download Thor's bloodsugar data from his OneTouch Ultra. Very cool. Too bad all the software is for Windoze. Anyway, I want a PHP page with a MySQL backend, so that I can take a look at historical data from anywhere on Earth.
Jim Walters, of Hennepintech fame, was kind enough to bail my rear out on a customized training conference this week. I was scheduled to do a talk on PalmOS, but I'm not leaving my kid this soon. It was hard enough not sleeping in the hospital (somebody needed to get stuff from home, and walk the dog, and Angela sure as heck wasn't leaving his side)--I'm not going to voluntarily run off to Craguns (sp?) for an overnight, less than a week after our dash to the Emergency Room.
On the downside, it's now 2246, and he's barfed twice. The doctor says we shouldn't worry about it, but he never barfed before...

Friday, April 30th, 2004, 2334

Life is full of surprises
Well, they say when you quit learning, it means you're dead.
We are most certainly not dead. We've learned how to spot that your little boy has diabetes: unquenchable thirst, copious urine production, vomiting, fussiness.
Thor has pretty much stabilized now, and until 5/2, he'll be at Saint Paul Children's Hospital, which is the shiznit for pediatric diabetes. We've gotten the ketones flushed out of his system, and he's rehydrated, and his blood sugar levels are ranging from somewhat high (300s to 400s) to the ideal range for a diabetic baby (100-200). Yep, that's right, ideal blood sugar levels for a diabetic baby are 100 to 200, even though adults would aim for 80-120. That's basically because a hypoglycemic seizure (caused by blood sugar levels that are too low) can cause brain damage in children under 5. A blood sugar level of 100 to 200, on the other hand, doesn't really have negative effects for a child of that age.
He's type 1 diabetic, which means he needs insulin. But it's not all that bad. Modern technology and current treatment regimens means he gets to have a normal life--the rigid "diabetic diet" of years ago has been abandoned. Now, we will simply measure his blood sugar levels before mealtimes, feed him normal food, then administer the proper amount of insulin after he eats.
Basically, he'll be counting carbs from here on in. Oh, and things like low-carb power bars and most of the new low-carb foods are basically crap. They substitute alcohol sugars like sorbitol and polysorbitol for real sugar. The alcohol sugars differ from things like aspartame and sucralose in that they _are_ partially metabolized. Also, many low carb foods essentially lie on the labels. When something says "net carbs", that's a good sign that the company producing it is a bunch of lying rat bastards. Sooner or later, the FDA will put an end to this sort of false advertising. But I digress.
He can still trick or treat, he can still have candy. He can still do everything any other kid can do. He just has to be a little more aware of things, and he'll be poking his fingers and toes to sample his blood sugar. If the whole flourescing glucose-detecting tattoo thing that the British are working on pans out, he won't need to prick his finger anymore. The gents at Lawrence Livermore National Laboratory are working on a flourescing blood glucose sensor which would be implanted under the skin, and would last for up to a year.
Meanwhile, the folks over at Medtronic continue to tinker with stem cells for heart attack patients, and I suspect that a spin off of this technology may eventually be able to repair the damage to Thor's pancreas that his immune system has caused.
Dr. McEvoy, the Directory of Pediatric Diabetes at St. Paul Children's Hospital, clued me into a few pieces of research which show that we're already successfully curing diabetes in mice, and humans probably won't be far behind. There's also work going on towards preventing diabetes before it happens. Hopefully, that'll be able to help our future children.
Considering that diabetes has been treatable for only 81 years, we're making good progress. The black death ran rampant in Europe for a lot longer than that. I believe we'll see a cure inside the decade.
Type 2 diabetes, by the way, is when you're body is producing some, but not quite enough insulin to keep up. That happens later in life, and is often brought on by obesity. Recent articles (no links, sorry) I've read in Science News seem to indicate that it's the inflammation associated with obesity that's really bad. Apparently, in some obese patients, macrophages go nuts, wiping out cells, causing inflammation and all sorts of bad juju.
I'm rambling now, though. Everything's fine, Thor is in good shape. Even though his bloodsugar did drop pretty low today, he never had a seizure or anything else. I'll probably never make another joke about a diabetic coma again, though. And I did learn today that Aspartame (better known as nutrasweet) will aggravate the hell out of brain tumors caused by cell phone usage. And if you believe Aspartame is dangerous, and will kill you young, I have some coastal property in Iowa that I'll let you have at a real fair price.