This blog post is by special request from Sarah's grammy. I'm glad she asked, so I can get this together before I start forgetting - as if that's really possible.
Sarah always seemed to have odd health. She’s a third child. The first two were much more typical; ear infections, coughs, colds, snot that seemed to go on forever. Yeah... ya know.
But not Sarah. She rarely got colds, and when she did they seemed to last about five minutes and then POOF, all gone. Instead of sniffles, snot and coughs, she got fevers and vomiting - not simultaneously. Since she was about two she’d get an unexplainable fever, usually topping out around 103 at least 3-4 times each year. The fevers were odd in that they were never accompanied by any other symptoms. She also had frequently projectile vomiting attacks. Every 2-3 months she would wake up in the middle of the night (it was ALWAYS the middle of the night), cough once, and SPEW! And when I say SPEW.... I mean it in the worst possible way. That hollow leg she’s always had, yep, it was filled with gunk that would spray bed, walls, furniture, the moon.
|Imagine how happy she was when she learned pickles were a "free" food! - Spring 2000 - 9 years to diagnosis|
I took her to see the doctor many times and it was always the same answer. She must have a virus. Then, around age 9 we started to notice that Sarah was a love and a half when she was well fed, but turned into a raving lunatic when she was hungry. Okay...odd.
Then, on February 24, 2009 (just over a year before her diagnosis) she nearly passed out at school. I took her to the doctor (not her usual pediatrician, as she was unavailable). He did some tests, and checked her blood sugar. Okay, here’s where I get extra sheepish... He said something about her blood sugar being abnormal - but didn’t elaborate. I assumed she hadn’t eaten and had a low blood sugar. It honestly never occurred to me that her blood sugar might be high! Kids don’t get high blood sugar, right? That’s reserved for older folks who don’t eat well and don’t exercise (before any of my type 2 friends flog me, yes... I’ve learned since then). So, the doctor didn’t seem worried about it, and I put it out of my head. She seemed to get better and all was well...for awhile.
I remember thinking in early 2010 that Sarah seemed thinner than she had. Sarah has always been a thin child, and I’ve always had to shop those stores that carry a hefty supply of slim sizes. But now her slim pants were baggy and in danger of ending up around her ankles. Weird. She was eating well, so I attributed it to an upcoming growth spurt (probably some wishful thinking because she was quite the shrimp at the time). She continuing having the frequent vomiting attacks, though the fevers seemed fewer. We had taken her in and called the doctor so many times that by this point we’d just decided it was a Sarah quirk and that she had a sensitive stomach or something.
|2/15/10 - 1 month, 3 days to diagnosis|
In early February 2010, Sarah had an audition for the Music Circus. As I drove her to this exciting opportunity, I suggested she practice her song just a couple more times along the way. She sang through it, not really sounding like the enthusiastic Sarah I usually hear, and then went quiet. I looked back and found this (I snapped this shot when traffic stopped, of course...).
|3/2/10, 16 days to diagnosis|
This was the first time at Disney that my husband and I felt we could get a little Disney time without children. Our older daughter, Amanda, was nearly 18, and her best friend came with us as well. So when the girls all decided to take an afternoon together, we were all for it. The girls headed over to California Adventure, and we stayed in Disneyland for a couple of hours before heading over to meet them. We found an exasperated Amanda and an unhappy Sarah coming off the giant Ferris wheel.
|3/14/2010 - 5 days to diagnosis|
Amanda told me that although she’d taken Sarah to the bathroom right before they hit the line, about halfway through the line she had to go again. Luckily Amanda’s best friend saved their place. This was the first sign that Sarah was going to the bathroom more than usual. I should mention that Sarah has always been a HUGE water drinker. Water is her favorite, actually her only, drink. She drinks it all day and all night - and has since she was a baby. Consequently, Sarah has an iron bladder that can hold approximately as much liquid as your average lake.
On our last day at Disneyland, Sarah was just not herself. She was dragging. She asked me for a milkshake at some point, took about three sips then lay down on my lap on the nearest bench - and there we stayed for quite awhile. Looking back, I can’t even imagine how high her blood sugar must have been with the churros, pretzels, ice cream, and overall Disneyland goodness. But somehow she kept bouncing back, so we didn’t realize it was anything serious.
We hoped being home and back into a normal routine would help Sarah feel better, but it didn't. Five days later we took her to the pediatrician and the rest is history. I've blogged some about it before. But here are the basics.
I called the advice line on Wednesday night and told them Sarah's symptoms. She was primarily lethargic, I remember. She'd lost weight. She just overall didn't feel well. She had a headache. I got an appointment for the following morning.
We went to the doctor, and she looked a bit better (isn't that the way it always is?). Still, her pediatrician decided to run a few tests. We went down to the lab for blood draws, and back up to the doctors office where they had her pee in a cup. Everything seemed fine, and we headed back. I dropped Sarah off at school and went back to work.
That night, everyone decided they wanted Mongolian BBQ for dinner. So the four of us piled in the car, and off we went. My cell phone rang not long after we left the house. I answered it, and it was Sarah's pediatrician. She asked me where we were...weird. I explained. She asked how close we were to the nearest emergency room - and my heart dropped out of my chest, rolled a few times around the floormat, dissolved under the car, and bounced squishily down the street.
The doctor explained that the nurse had misread a ketone test (uh...huh?). Something about the nurse telling her .1 instead of 10 (or something like that, I didn't have a clue what ketones were at the time, so she was speaking a foreign language). She said we needed to get Sarah to the hospital ASAP. She was going to call ahead and let them know so they'd take her right back. She said it looks like Sarah has type 1 diabetes.
At this point, I'm still in la la land, because I hear diabetes and know what that is, but I'm not really comprehending the magnitude. So off to the hospital we went. About 8 hours in the ER were followed by an ambulance ride to another city where they have a diabetes specialty. It was 2am, and I very groggily managed to follow the ambulance without causing an accident. Sarah went straight to ICU, and stayed there for two days, until the darn ketones decided to depart. Then it was a plethora of people whizzing in, all bearing paper charts of snacks, carbohydrate information, sick day, injection instructions, etc.
And thus began our journey...
In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com