Extra Attention

Do you participate in TrialNet for your other family members?  We do.  Last year we went a few months after C was diagnosed so that E and I could get a blood draw checking for antibodies.  Checking to see if we are at an increased risk for developing diabetes.  Last year we were both negative.  E, being a sibling, can go back every year until he’s 18 to be retested.  E had really good memories of last year because it was the first time we’d heard of using numbing cream to do a blood draw.  Seriously, why don’t all labs do this? At least for kids that are fearful?  We drive about an hour and a half away to Children’s Hospital Los Angeles (CHLA).  They can send us orders to do in our normal lab and have them sent down.  Why do we do the drive?

E has a brother with two chronic illnesses.  Sometimes these illnesses get more attention than he does.  C is always being fussed over and checked on and talked about.  C always has doctor appointments and ‘important’ things to do.  Sometimes E needs to be fussed over, too.

We went on Tuesday after C’s appointment at UCLA.  We’d only be to the enormous CHLA one time before, used a map, and still got lost a few times.  This time, we had no time schedule and told them we didn’t need a map.  E’s reading now, so we let him check the signs for the “Tiger Elevators” which go to the endocrinology department at each intersection.  Every wing has a different animal.  When you get to the elevators, the carpeting will have that animal’s print and the wall across from the elevators is all framed pictures kids have drawn of that animal.  It’s really a fabulous place.

First we stopped at the aquarium to check out their fish.  Then we stopped at the play area to climb on the giant blocks.  There, a woman stopped and told E she was going to read a story if he’d like to hear.  His answer was that he just wanted to get his blood draw over with.  So she gave him a book to take home.

We found our way, got upstairs and went to check in.  I told the lady, “My son’s here for a blood draw for TrialNet” and another lady behind us goes, “Oh! That’s me! Hi E.”  Awesome.  He let her know he wanted numbing cream and got it done.  Afterwards, he got a TrialNet water bottle and TrialNet sunglasses.  We stopped at the McDonald’s (in the hospital) for ice cream sundaes.

So much better than headed to our plain old boring lab and ruining an experience.  He’s already excited about going back when he’s seven.

Here’s the poke he wanted me to document…

So, while in LA we were trying to figure out what to do.  What does E decide?  Well, we’d just watched LA Ink the week before where they had a new mural painted on their back wall.  The guy who did it was phenomenal and only used spray paint.  E was super impressed and asked if we could go see it.  So that’s what we did.  We just did a drive-by of the place, but got to see the back mural and cruised by the front (you always see the front in the show, they recognized it) and someone was walking in.  They were so excited that they could see a bunch of people in there were sure Kat was in there.  🙂  I tried to take pictures while driving by the back (safe, I know) but they came out blocked by the fence.

Here’s a picture of part of it I found online if you haven’t seen it… That’s spray paint.  Seriously.

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drink your gatorade.

Last Saturday, July 17th, was C’s one year anniversary with type 1 diabetes. Not actually true since we saw very strong symptoms over a week before his diagnosis, but it marked one full year of knowing what we were dealing with.
A local group, Diabetes Outdoors, was having their annual beach day the same day. It sounded like a perfect way to celebrate how far we’d come in that year. And it was. Lots of fun, perfect weather, perfect water and lots of kids and some adults living with diabetes.
However, C refused to let me put sunblock on him. Since he’s never gotten a sunburn before, I didn’t really think much of it. I was more concerned with trying to remember to test him and carb him. After seven hours in the sun, even he with the perfect olive non-burning skin, had a horrible sunburn. The next morning he felt sick. I assumed it was from the sun. He had a low fever and couldn’t finish the raspberries he bolused for for his breakfast. Had to take glucose tabs to cover the rest. For the next few hours he layed on the couch feeling nauseaus and not doing much. I kept testing his blood sugar and it was between 60 & 90 most of the morning. It was a little nerve wracking trying to keep it higher since he didn’t want juice or anything else in his stomach. He had juice once & vomitted shortly after. I fed him 2 Smarties at a time for a few hours. What’s that a carb every 10 minutes or so?
It was a few hours when it hit me that even though he was low, maybe I should test for ketones. Pulled out the meter and guess what… 1.8
HO.LEE.SHIT. I hadn’t even suspected this issue earlier. He hadn’t regular-sick in the entire year before this. I’d never dealt with sick AND diabetes together. I called and left a message for his doctor at home letting her know he was vomitting and had large ketones. What should I do?? We’ve dealt with ketones before. We normally give about one unit of insulin and a ton of water. BUT, I certainly didn’t want to give insulin if his blood sugar was only 80 and he couldn’t drink water and keep it down.
After an hour of not hearing back from her, I gave 0.50 units of insulin. Blood sugar was just above 80 and I kept feeding him the Smarties.
I also pulled books out and started trying to read what I should do. Unfortunately people tell you to call your doctor. Hmmm. I also read that ketones over 1.0 for over 3 hours can lead to serious DKA. I tested again and got him down to 1.3. Blood sugar was 122 and I gave one unit of insulin. Decided I’d test like crazy and get our asses to the ER as soon as it started dropping too low.
A bit later, I gave him another juice box. He told me he’d drink it in the bathroom by the toilet. Twenty minutes later, he still hadn’t had any of it. I retested his ketones and it was 2.1. Found out that 15 minutes earlier he suspended his pump after hearing me say that we needed his blood sugar to come up. I freaked. Poor kid, I scared the crap out of him yelling about how he’s never ever allowed to touch that pump without checking with me all while running around the house grabbing my purse, the meters, whatever we’d need. Grabbed him and ran to the car headed for the emergency room. As I said before, we’ve dealt with ketones. We’ve cut them off before they could get any headway. I’ve never seen a 2 on the ketone meter. At this point, did I think I had a huge chance of losing my son? Yes. The only other time in my life I was that scared was the morning of his diagnosis thinking he was going to die in the waiting room.
We got to the ER, let them know why we were there and he was in a bed in under 2 minutes. The Dr. came in and after talking about everything his thought was this. C became dehydrated yesterday at the beach. From there, the ketones started and even though I was giving insulin, it wasn’t going to help without the fluids in his body. They put him on an IV with just saline and pushed some anti-nausea meds through it. That was it. He was fixed. We were home four hours later. He felt great, woke up with in-range numbers and life went on just like normal.
Here’s the part that’s stupid. I always have given gatorade as his extra carbs when he’s active. Last month at the pool, he couldn’t be bothered by drinking 1/2 a bottle at a time. He refused, so I just gave him 2 glucose tabs. Easy breezy. Since then, it’s just seemed easier to slip him a couple when I think he needs it. It doesn’t disrupt his playing and he doesn’t complain. However, now I see exactly why gatorade is so much better than just plain sugar. If we’d used it, we probably wouldn’t have ended up in the hospital.
Lesson learned.

out of the hospital

We’re home and things are going ok. Of course his first night home his blood sugar went a bit higher than I had hoped (277). I gave the proper amount of insulin and checked an hour later and it was a bit higher than before. He also said he had a headache so of course I was a nervous wreck. I ended up staying in his bed until 2:00 am when it was time for me to check his blood sugar again… Thank goodness it was down to 130 at that point. I decided rather than getting in the habit of being in a constant panic, I went back to my room for the rest of the night where E was already sleeping. In the morning it was still only 133. Thank God!!
He had breakfast with his insulin and then a snack later and just had lunch. Before his lunch, his blood sugar was 160-something. Not bad. I know there will be times where it’s too high and too low, but I really really hope that we have a chance to get used to all of this before that happens. We’re doing our best.
*****

I tried to post a couple of times from my phone, but just can’t get it to work. This was from the hospital…

Tuesday, July 21
C’s handling this so well it’s amazing. He gets his blood sugar test stuff ready and then I do the actual finger poke and he uses the meter to check the blood. Tonight he took another step and wanted to get his insulin shot ready! He did it all but the actual shot. Kids adapt so quickly!!

now, here’s his photos…beginning to end of our stay. note how you can SEE the improvement!

Friday morning, just admitted to the E.R.

En route to Cottage Hospital via ambulance
ICU (Friday)
ICU Friday night
Saturday around 11am Finally breakfast! First food in 28 hours!!
Visit with brother. Building Legos (Saturday)
Feeling good enough to play Legos OUT of bed! (Saturday)
Sunday in a regular room, no more ICU!
Checking out the view!
A visit from his best friend (also not in good shape!) Sunday
Playing cards on the roof patio (Monday)
Anything to get out of bed (Monday)
Dottie! One of THREE dogs who came in to visit on Tuesday
Us, feeling better
Tuesday finally back on YoVille
Back on the roof patio (Tuesday)
Demonstrating his new found love for (low-carb) beef jerky, or Meaty Treats as we call them

fun in hospitals

we’re watching tv and all of a sudden C, laying on his side in bed starts holding down the button that slowly raises his bed while humming star wars music and cracking up. he ended up higher than he probably would’ve been standing up.

diabetes

last wednesday and thursday C didn’t feel well. this was after a week of me noticing he had to pee more than often and was continuously thirsty. friday morning i decided to take him to the dr. to get screened for diabetes. when we got up he looked close to death. in about a week he’d lost 10 lbs., he had no energy, could barely walk and couldn’t even talk because his saliva was so thick and sticky in his mouth. it was like a mouth full of glue. sure enough, my fear was true. his blood sugar was higher than the meter could even read (over 500). Normal is around 100. We were sent to the e.r. for saline and insulin and then was transported via ambulance to santa barbara to the pediatric icu.
he was so tired and sort of confused. he slept the entire day. twice he woke up hallucinating and screaming and it was hands-down the scariest thing i’ve ever experienced. they told me it was normal and he had no recollection of it later. his blood sugar kept going up high, then down way too low and right back up. Today (Monday) it seems to be fairly regulated.
Poor C has always been scared to death of needles and after the first day, had been poked so many times he was already used to it. Today I was learning to give them to him myself. We’re getting a heavy-duty crash course where we should be leaving this hospital almost on an expert level. There’s almost no time to even get too upset at this point. There’s always someone coming in to educate us on another part of it. I just can’t wait for another month because i know we’re going to be feeling a LOT better at that point.
I’ll be back on once i’m home to add some photos from our stay here.