Tuesday, May 29, 2007

Friday, May 25, 2007

The Adventures of Captain Ketone IV

It was just before dawn on Tuesday morning. Brenna started fussing in her room and then climbed into bed with me. As we cuddled up I felt her little body was on fire.

I held her long enough for her to go back to sleep so I could sneak out of bed to hunt down the thermometer. I couldn't find the ear beeper thermometer so I put the digital one under her arm and waited for the beep.

101.5

She felt hotter than that to me and I remember that under the arm isn't the best or most accurate spot but I wasn't about to lube it up and give her a rude awakening. Next stop, blood glucose test.

1-2-3 poke. 256.

Not bad, really. The range her Endo suggests is between 100 - 250. I like to see her in the 100's (who doesn't like to see their numbers in the 100's) and I've set her target in her pump at 165 so it's not really that far out of her range.

Drip, drip.

I was getting blood all over. So I figure as long as her finger is still bleeding I might as well put it to good use. Go go gadget - ketone meter! Pop in a purple strip and hoover up all that blood and

::beep:: 1.7

What the ?!?

I shuffle through the stack of info I brought home last month from the CWD confrence and find the colorful bookmark that explains the numbers. Until that morning, the reading on the PrecisionXtra has been 0.3.

Red. If your blood ketones are 1.6 or above get immediate medical care. Yikes! Deep breath. Another one. Dial Nurse J. Get an answering machine and leave a message (neglecting in my state of almost panic to leave my phone number). Sift through the cabinet for Tylenol - nada. Call Nurse J's office & leave a more detailed message. Hang up. Call the appointment call center and make a 9:30 a.m. appointment. Run to grocery store for Tylenol. Send Therin off to school with Al. Call work & leave message.

Test again. Blood Glucose: 190. Blood Ketones; 2.1.

Load Brenna, barely awake now, and everything we might need into the van and start driving. Use handsfree Uhura earpiece to call everybody again (why did I forget to call the Endo's pager?) Arrive at the clinic early. Thank goodness we're seeing her Pediatritian. Dr. E. gives her the once over, no ear infection, throat's fine, fever's down by now, she's just got kid crud. Some virus that her body is fighting off nothing particular. Clear fluids & fever reducer and rest. But, diabetes changes everything. Those ketones are worrysome. She's probably a little dehydrated from the fever. But to be safe . . . Dr. E suggests doing some blood work to make sure everything is O.K. Since the lab work is going to take a couple of hours it'll be better to start her on an IV now than find out 2 hours from now we should have started her on it right away. Nice that they were able to draw blood using the IV thingie.

Nobody has any experience with blood ketones so we try and get her to pee. No luck. We snuggled up toghether and watched Land Before Time on the tiny hospital bed-- the same one where we waited anxiously for news of a hospital bed when she was diagnosed. I convienently made my official "I won't be in today" call to work when Little Foot's mommy dies so I don't have to watch it. Call the babysitter, call Al, put the phone away. I want to call my Mommy but she's having fun with Rowan so I hug my girl close and wait. I do BG testing about every hour and watch the normal pattern. 100's, bolus, bagle, 301, bolus, 100's - still working on that postprandial spike.

The IV stand thing begins to beep and the nurse unhooks the tube from the IV but she leaves in the IV . . . just in case. I take Brenna to the potty again and she has a meltdown. Poor baby. I can't really blame her.

Before we can go home we need a urine sample.

Two more tantrum trips and I try a different tack. Finally, we have a cup full. When we get back the nurse tells Brenna that she did such a good job! Woo hoo! High five. Then she leaves to do the urine ketone test. After she leaves, Brenna turns to me and says, "Mommy, she was so excited."

"Yep, baby, you did such a good job! Can I have your finger?"

The blood results are back and things look good. Her bicarbonate level is 22. She was a little dehydrated so keep pushing clear, non-sugary fluids as long as she's eating solids. If no solids give her drinks with carbs -- water them down if you can. And the Endo says start her on the 6 day plan. Huh? What's that? Test her every two hours for the next 6 days. Sigh. Might as well start now.

Poke - 84

Well, it is almost lunchtime.

So here I am. I'm taking the first shift and Al's taking the second. The last two nights I was so tired I was afraid I'd fall asleep so I did housework. Not that it looks like I've done anything. . .

Tonight though, I finished my audiobook while holding my sleeping beauty. When she was safely tucked away in bed I caught up on all the blogs I've been composing in my head for the last couple of weeks.

Time to go wake up Al.

San Diego, revisited

My cute backpack turned 5! We had his birthday party at FunWorks the day before Mother's Day. We played and pizza with just a few of his friends. FunWorks is loud and crazy, but we picked a good time, 10 a.m., so there wasn't a huge crowd. The cousins weren't able to join us but Rowan's best friend from preschool was able to come . . . her birthday party was at the Bowling alley down the street at 1 p.m. so it worked out to be a party kind of day for the birthday boy. Rowan had a blast!

My parents took a trip with Therin to Disneyland during the summer before he started Kindergarten and they took a trip with Rowan earlier this week. They left early Sunday morning, just the three of them and arrived in Legoland at 1:15 ish. So after their 7 hour car trip they played there for about 4 hours and went to their hotel to crash. They went to Legoland again on Monday, SanDiego Wild Animal Park on Tuesday, and SeaWorld on Wednesday. They got back into town about noon today. I missed Rowan but I'm so glad that my Mom & Dad got to spend time with him. I'm glad that Rowan got to talk without having to compete with his siblings for attention. As soon as I get pictures, I'm posting them! He was so excited and he called us every night. They're making a scrapbook of their adventure.

I sent Rowan with his birthday money. I was talking with my Mom on the phone and he walked up to her and handed her his money. "I'm buying the phone so I can talk to my Mommy." I laughed so hard. He bought me zebra socks and he tried so hard to keep it a secret. He told me on the phone each time we spoke that he had a "secret that he wasn't going to tell me about the zebra socks." He whispered to me often and sent me lots of phone kisses. What I noticed most over the phone was how very little he sounds. I know that sounds wierd but he's growing up so fast and I ask him to take responsibility for so many things and expect so much that I forget that he's still just a very little boy. Still my baby. I'm not saying that I want him to grow up fast, but if I don't encourage him to try to do things that might be difficult for him then he won't know a sense of accomplishment. I forced him to try and buckle his own seatbelt for months before he could actually do it. "You try once and then I'll help." Twice, three times, five times, then one day; "Mommy, I did it! I buckled myself!" Somedays he still has a hard time buckling but if he tries first I help him. But that little voice on the phone made me want to just scoop him up and take care of him but I've got to let him go be his own little person. He had a great time doing it this week too! Ah, growing pains. Does that mean I'm growing up a little too?

Thursday, May 24, 2007

Sweet Victory!

On May 16th, I stayed home sick. On the 17th at 8 a.m. I had an IEP to go to that I was positive would be no way to reschedule should I need to cancel. Luckily, I was able to drag myself to the meeting - I felt LOTS better than the day before but had no energy for anything.
The Autism specialists from the County have been working with Therin to put in place a self-monitoring system to take the burden off of the teacher and give him the tools to keep himself on task. They reported that while Therin is a very smart boy and could be doing the school work he is unable to self monitor with the amount of time they are allowed to spend with him per week to teach him the system. Since they've seen him 3 or more days a week for a couple of hours each time during many times of the day (recess, math, reading, direct instruction, morning, afternoon, etc.) They collected A LOT of data. Therin is very smart but he doesn't do his work in the large classroom setting unless he is being prompted. The teacher is doing her absolute best to promt him and be able to teach the rest of her class. And their conclusion is that to properly teach Therin the self monitoring concepts and keep him on task for classroom learning -- he needs an aide. Then she point blank asked the District Guy "Who are you going to get to do this? This is beyond the scope of the services we provide. We will be unable to come out and be there as often as Therin needs to learn the system." In a way, it was probably good that I was sick so that I didn't stand up an whoop! The tension was so thick you could scoop it with a spork. The District Guy grudgingly agreed to an aide for Therin at 3 hours a day for a 6 week trial period. Then he signed the IEP looked at me, and tersley told me that he felt that he felt that all of the FAPE protocols had been met . . blah, blah. . . basically it seemed like a sour grapes kind of thing or a CYA kind of statement. Gee, the Autism Specialist collected data to back up what I had been saying about my son since Kindergarten! I wasn't surprised - it just ticks me off that it took so much red tape to get what my son needs. But we got it!

But it makes me wonder. . . did I get it because of all the hard work from the team of wonderful people that I'm working with? Or did it happen because Therin's teacher let slip (on purpose with my blessing) that I was looking into getting an advocate?
So when I sip from the victory cup -- there is a bit of an aftertaste -- but not enough to stop enjoying the taste.

Life as We Knew It

I've been listening to audiobooks. My most recent book is called Life as We Knew It by Susan Beth Pfeffer. Follow the link for the publishers info page, I think it has just enough information there were some good reviews but they gave away too much plot. It's a very interesting book. I'd put it in the Apocalyptic science fiction genre. We have it in the Children's Department but it woud take a VERY mature 6/7/8th grader to handle this book. I could have eaten this book up after reading Watership Down in the 6th grade if it were around. It might even appeal to the Lurliene McDaniels fans - a little bit anyway. It's a "what if" book. What if the moon was hit by a huge asteriod and knocked it closer to the Earth. It starts in mid May and I don't think it'll give anything away that California gets dunked by Tsunami's (LA always ends up "falling into the Pacific" in some way or other). What's wierd is that I started listening to the story about the same date that the moon is knocked out of orbit in the book and they mentioned SanDiego being hit - Rowan was in SanDiego at the time so I felt a momentary panic thinking about him. Then I walked into Walgreens to pick up some diabetes suppilies and had to stand in line right in front of a tabloid that was talking about a little girl that had been kidnapped right out of her parents hotel room while they were on vacation. Rowan was on vacation with my parents. They just got back today. It makes me feel so much better to have him home safe and sound. I love Sci-fi and I've been fiddling around with a plague story since 1996. As much as I like the story (Ms. Pfeffer's, I don't have a completed draft of mine) -- don't read it while you're depressed (although if you did have a draft of mine it would still be good advice). Oh, "Catherine, Called Birdie" fans might enjoy this book as well. It's similar in that it's written as diary entries. Something else reminds me of Catherine too but I just can't put my finger on it. Two plucky young ladies handling circumstances beyond their control the best they know how? Perhaps. If you happen to read it let me know what you think. Oh, if you read the autism fiction books tell me what you though as well.

Friday, May 04, 2007

My Backpack

Mornings are always hurried trying to get everyone ready and out the door but since Therin has been keeping track of the days he tells me "today is Friday, no school tomorrow" and all the little things his siblings do just don't seem to bother him. Brenna is alway a big helper especially after Therin puts out our bowls or plates on the table - she loves to rearrange them. Sometimes I think she does it just to bug him. But my favorite morning thing to do is put on my backpack. O.K. so this backpack is a little heavier than other backbacks but he's just so cute! I love that I work right across from Rowan's Preschool. I can park at work and walk across the street with him. Since I usually give him a piggyback ride somebody from my work notices and comments on my "new backpack" and Rowan always giggles and says, "It's just me, Rowan".



It's been really cold at work recently even though outside the temperature is nice. Last Friday, I was sitting outside eating & reading when my Mom drove by me and waved. Must be time to pick up Rowan from preschool. I took longer to find my stopping point than I thought because Mom was already outside with Rowan & Brenna getting them into the van as I wobbled over on pins-and-neeedle feet.
"Are you coming with us?" asked Rowan
"I had lunch early today. I came outside to read so I can warm my bones. Library is so cold."
"Can I go to your work? I need to cool my bones, it was hot in my preschool," replied Rowan.
That would have been fun if he could come inside for a bit but there was stuff to do. So I had them drive me around the block and drop me off.

Bernard's Blog: Decoding the Dexcom data format. An update

Bernard's Blog: Decoding the Dexcom data format. An update

Dexcom Challenge

Don't you hate it when technology doesn't work right? Me too. Bernard's trying to get Dexcom to help him get to his data. What is a Dexcom? It's a continuous glucose monitoring system. It's great to have that data but if you can't get to it to analyze it and figure out what you can do to fix things it really doesn't help much. If enough people link to Bernard and he becomes number one on the list if you google Dexcom, maybe the company will pay attention to his requests for assistance.
Good Luck Bernard!

TGIF

Friday's are great! Hardly anybody at work so fewer distractions and sidetracks. Mornings are slightly less crazy with the kids. And sometimes I get to go home just a little bit early. I had a teen poetry thing last Saturday so I got to have longer lunches this week and I get to leave at 3. Yaay!

Tuesday, May 01, 2007

Overwhelmed

I don't know why I do this to myself. I let things back up and get out of control and then I scramble to "fix" them. I'd feel so much better if I could just keep on top of things. I start to work on something and then get sidetracked. I wish I were more organized. It's frustrating to watch people who can look at something and just organize it. Too much stuff. Rowan's 5th birthday is in 7 days and I still don't know what to do. What's so hard about writing up a few invitations and deciding on a place and time? Beats the hell out of me I don't know why I'm so bloody incompetent. It'll all turn out fine in the end but a semi-clone would be mighty handy. Or Martha Stewart. Or just her brain. Any brain? If you've got a spare let me know. This is the "easy" thing to organize there are a zillion other things clamoring for my attention and here I sit at 1:00 a.m. blogging instead of doing any of them or sleeping. Sleep would be nice. I fell asleep on the couch and Al sent me to bed and I woke right up. I don't feel like I deserve to do anything fun until my "must do" list is taken care of.