Ping-iversary

At diagnosis, C’s nurse mentioned a pump.  He immediately said he never wanted one because he didn’t want surgery.  We had a neighbor on an insulin pump and we had just assumed that she’d had surgery to have it ‘installed.’  The nurse corrected us and he informed him that there was no surgery involved and he let her know that he still was not interested. 

A few months later I was looking at the OmniPod website.  They had a video explaining how it worked.  I was sold.  I asked C to watch and he freaked out yelling how he “WAS NOT GETTING A PUMP!”  I told him that he could NOT make a decision like that without being informed.  He HAD to at least watch the video.

He watched.  And he was ready to pump.  From there we went on Medtronic’s site  together and saw that they had a continuous glucose monitor built-in.  They got us, that was the one we wanted. 

Not long after we were at the JDRF Walk to Cure Diabetes and saw the Animas booth.  We already KNEW we wanted the CGM but we took their info anyways.  Soon after, we found out that C’s insurance didn’t cover the CGM sensors.  We heard that Animas would be integrating eventually and maybe his insurance would cover it by then.  We went on their website.  C was SOLD.  It was Ping or shots.  There was no other option to him.  The color screen, the sleek looks, the waterproofness, the remote control.  He loved it all.  He asked if I thought we could get it by the upcoming weekend.

To be sure we went to a Medtronic class to learn to use their pump, check it out, push its buttons, try out their infusion sets.  But C knew he would never have that pump.  He tried an OmniPod demo.  After about an hour he said it felt annoying and big and wanted it off.  Of course, I don’t think it ever had a fair shot after he’d made up his mind…

A week later the rep came out  to show us the Ping.  We checked it out, pushed its buttons and gazed lovingly at its beautiful color screen.  We filled out the paperwork that night.  But insurance had other plans.  We jumped through hoops for months and we got denied.  I spoke to the boys’ pediatrician only to find out that he works with our insurance and he’d push it through.  A week later I received a call stating that they’d gotten approval and C’s shiny black Ping would be arriving the next day.

C was hooked up one year ago today.  He hasn’t had a shot since. 

best gift we ever received

Shots were unnatural to us.  We couldn’t get small enough dosages to work right for C.  He was starving himself to not get extra shots or have to eat too much at his meals.  He’d estimate down about how much he’d eat and was always left hungry.  For a kid who doesn’t eat meat or cheese (carb free), it was very hard.

Technology, computers, gadgets… these are natural to both of us.  The day we hooked that pump onto him, we felt like life was back to normal.  Neither of us needed time to adjust, it just worked.  He eats when he wants.  We can bolus the tiniest little amounts so he can do his normal ‘grazing’ again.  We can correct a million times a day if we needed to and it keeps track of active insulin for us.  I don’t have to use my calculator as much anymore.  I don’t have to worry about C doing the math wrong anymore.  That pump gave him his life back.  I’ve never been more in awe of a machine in my life.

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memories…

Every once in a while I get reminded that C REALLY DOES have diabetes and celiac FOREVER. It makes me sick to my stomach when it happens.

Today I got registration papers in the mail from the summer camp he goes to every year.  He’s not going this year.  I don’t have enough hours at work to justify them going, but also, I’m not sure how I feel about him going on field trips with 19-25 year olds who have no experience with diabetes.  Anyway, when I got the papers I realized that I don’t think they even know that he was diagnosed.  The first time I notoiced his symptoms we were at Hurricane Harbor with them.  It was the last field trip he did with them.  I had to pull them out of day camp early due to my hours being cut at work, but I went on the last one with them.  It was a million degrees out, we were only drinking from the drinking fountains when we passed them and C had to head for the bathrooms about every 30 minutes.  He even decided to sit out at the tables for a while and all his friends were on the water slides.  I verbalized to my friend, “I hope the kid doesn’t have diabetes.”
Oh, if only I had known how dead on I was.  I wish I had known just a little more about diabetes.  I had no idea it was so serious.  I had no idea that he really could have it.  Oh that sarcastic remark will stay stuck in my head forever.  It was actually 8 more days before I rushed him to the ER and was told I was right.
Anyway, I wrote back to the camp.  I told them about his diagnoses (is that how you spell it when there’s more than one??). While writing I almost started crying.  We live with these day in and day out.  There’s not a lot of thinking about them, just living and managing.  It’s just a new life and we’ve adjusted pretty darn well.  However, writing it felt like reliving it.  It was like hearing the doctors tell me “yes” again when I asked if he’d be insulin dependant.  It was just a reminder that “yes,” he will have these forever.

Undiagnosed

When C was 15-16 months old, he’d had this unusual diarrhea for about 2 months.  It was orangey colored and very mucousy (sp?).  I nursed him until 14 months.  It was right after I stopped nursing that it started.  I took him to the doctor and they thought it must be parasitic.  They did a stool sample and there were no parasites.  They then decided it was probably an allergy to milk since he had just started on cow’s milk.  Removed the milk and it eventually got better.  They wanted me to reintroduce milk, but he was fine on soy milk and rice milk so I left it alone.  Until he was very underweight.  We had moved back to California and his new doctors were concerned with his weight and wanted him to start trying milk.  I added it back in his diet and there were no problems.  He was usually floating around the 10th percentile for weight and 50th – 75th for height (birth was about 50th/75th).  When he was about 4, his weight dropped down to the 4th percentile and I was looked at harshly for having him on a vegetarian diet.  He has never eaten meat and now at 10 years old I can SOMETIMES bribe him to try some for money…  Anyway, his weight and the way doctors look at me about it have always frustrated me.  When he was diagnosed with diabetes, I had brought him in to the doctor’s office.  I called and said I needed him tested for diabetes.  We got there and the Dr’s first idea was that he was malnourished.  Wanted to know what I was feeding him, what a typical day was meal-wise.  Then, came back in the room and informed me that I was correct and he was in DKA.  Handed me some printed papers about what that meant and told me to drive straight to the hospital.
Two months later, he was still losing weight and the blood work came back saying it was celiac disease.  I had never even heard of this before.  The word “gluten” sounded a little bit familiar, but I never would have guessed what it meant.  The more I read about it and it’s atypical symptoms, the more I wondered if C had suffered from this his entire life.  Moody, irratible, generally not feeling good… These were all very normal for C.  Not that he didn’t have plenty of great, happy, fun times in his life, but moody was definitely something people could use to describe him.  Changed the diet, changed the kid.  Granted, he’s back to being moody, although I still think less than ever, but his ever changing blood sugars probably have a lot to do with that also.
Anyway, I just read an article about a little boy who’d accidentally been eating gluten (with celiac disease) and had mucous is his stools.  This got me thinking.  I’ve meant to look it up, but keep forgetting.  Sure enough, I’m reading that problems having to due with inflammed intestines will cause stools to contain mucous.  Examples given are Krohn’s Disease and Celiac Disease.  Other possibilities are parasites.  It broke my heart that 10 years ago they were quick to test for parasites, but nobody thought to check for Celiac.  It breaks my heart that recently I’ve read two articles suggesting that untreated Celiac Disease could actually be a cause for Type 1 Diabetes, not just a related autoimmune disease.
I guess I shouldn’t be suprised.  They say that it typically takes 10 years for a person to have symptoms of Celiac Disease before diagnosis and we’d be right on target for that.  I just really hope that it changes soon.  I hope doctors start testing for this more routinely.  My other son and I were tested.  Just a vial of blood and under $100 and it was done.  Why are more people not being told they should get this blood work done?  One in 133 people have it?  There is a serious lack of awareness going on.

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

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.