Running Into the Horror Stories

I don’t know how to start this other than to say that it’s not an upbeat positive post, it’s negative and scary.  I wasn’t sure how/if to share this with anyone else, but keep feeling the need to express the story.  That’s my disclaimer.

Molly (C’s Diabetic Alert Service Dog) came home a few days ago.  She’d been with her trainers for an entire month.  She goes to work with three different super-trainers who work on obedience, public access and scent work in order to make sure we’re on track, see where we need help and give pointers.  We picked her up from T who told me this story.

T and a friend took Molly and some kids to a restaurant for public access work.  The kids wanted to eat outside, but the adults stayed in with Molly for practice.  After eating, they went to the outdoor area to talk to the kids.  There was a couple there and the man walked over to tell T that they give money to support a service dog organization.  T explained that Molly is a Diabetic Alert Dog and what her role is.  The man proceeded to tell her that they had just lost their son to type 1 diabetes the previous week.  He died in his sleep apparently from a low blood sugar despite having five roommates in the house.  He was 24 years old and using a pump.  He asked T if she would bring Molly over to meet his wife, which of course she did.  T told me that the woman hugged Molly and just cried on her for quite some time.  Molly didn’t budge and just provided this mother with the therapy she needed in that moment.

I can’t imagine how this couple felt meeting Molly.  I can’t imagine how it would feel to be in T’s place.  She told me that Molly had touched a number of people over the month that she was away, but this was by far the most significant.  I can’t figure out how this story makes me feel.  Does it scare me? More than I can imagine.  For obvious reasons, but also it scares me that I could run into this couple or another just like them and be faced with it in person.

C overheard the conversation and asked me about it later.  I asked if it made him worry and he said no because B (our old Animas rep) had diabetes for “a really long time and nothing like that’s happened.”  I wish that were enough for me.

This disease is not just about chasing numbers and trying to achieve your goal A1c.  It’s about keeping your child (or yourself) alive.  It’s praying that everything you’re doing works without ending in tragedy.  I know this isn’t an isolated story.  I have heard way too many of them.  We cannot afford to live in blinders thinking that in this day and age our kids will end up just fine.  It’s not a fair to the families who’ve done all they can and who’s kids weren’t ok.

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It’s Happening

C’s application was approved.  He will be receiving a Diabetic Alert Dog!!

This is such exciting news.  We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs.  He craves freedom and I want him to have it more than anything.  He’s 12 years old.  Yet, sleepovers scare me to death.  The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it.  These thoughts get to me and it’s hard to move past them.

We’d considered a Continuous Glucose Monitor (CGM).  C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times.   C knows that I wanted it.  and I know that he doesn’t.  He does not like the idea of another site.  He hates the idea of carrying another item.  He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him…  But a dog?  He would definitely not resent a dog.  He loves the idea of a dog.  I love the idea of using a natural resource and tapping into its abilities.

This is the route for us and I cannot wait to start the journey.  Oh, that’s right… it’s going to be quite the journey.  The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us.  Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January.  But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing.  This puppy is bred to be a working dog and is being taught the scent we want to know about.

Still, we won’t be alone.  When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train.  We will enroll in a standard puppy training class, we will do scent work.  After 2-4 months, puppy will go back to the trainers for a month.  They will do more intense training including lots of public access work (remember, this dog will go everywhere!).  Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on.  This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained.  We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic.  Not just scent samples, but real-time highs and lows.

I started a facebook page to give updates on our process.  I’d love it if you’d LIKE it and pass the word!

www.facebook.com/camdensguardianangel

D.A.D.

I took a big step today.  A really exciting step.  I sent in C’s application for a Diabetic Alert Dog (D.A.D.).  Please help us say a prayer, think good thoughts, whatever you do to help him get approved and start moving forward on the process.

Silly Questions

Once a year we travel to UCLA to meet a special team of endocrinologists that C’s insurance, evidently, trusts more than our own.  They do a thorough overview of C, his diabetes, his pump settings, A1c, etc.  They ask a million questions and then submit paperwork to our insurance that a)Yes, we’re taking care of his diabetes, b)Yes he does need all that stuff you’ve been paying for.

When I’m filling out the paperwork this one question really sticks out to me.   Like, seriously, is there a weirder question to ask on medical paperwork regarding a child on insulin??

Yes. Countless. Eat Sugar.

Lower Lows and Losing Insurance to Boot

I’m up late.  This is way late for me.  I’m in the middle of another battle with C’s lows.  He was at 90 before bed.  I gave him a bowl of ice cream with caramel topping.  About 18-20 carbs.  No insulin.  Thirty minutes later he tells me he’s low.  45.  Here we are back to around 90…7 juice boxes later.  He’s refusing to eat or drink anymore because he’s “full.”  So, I’m testing him every 15 minutes for now to make sure he’s moving upward instead of pulling another U-Turn and going back down.
While sitting here I noticed the mail is still on my desk.  One piece is a notice from Medi-Cal.  It’s telling me that they’ve dropped my children’s health insurance coverage because I’m making too much money.  This is really hard for me.  Here’s my long boring story.  I need to rant apparently.
My kids were on Healthy Families for years.  It’s regular insurance but with lowered rates according to your income.  It’s great insurance.  Then, when C was diagnosed with diabetes we found out that they don’t cover chronic illnesses, so we get referred to another program, California Children’s Services, that covers everything related to that.  It’s amazing.  He has 100% coverage and so far the only thing they haven’t approved is CGM and that’s ok (for now).  Then, my hours at work dropped due to 1) the economy wreaking havoc on my job 2) me missing lots of work due to Dr. appts and illnesses.  That’s when Healthy Families needed my annual renewal information.  I promptly received notice that I did not make enough money for the program and would be referred to Medi-Cal.
I receive money from Unemploment for the hours I’ve been cut at work.  Unemployment has a lottttt of paperwork to deal with in these times and sometimes it takes a very long time to receive your check.  Sometimes it doesn’t.  I didn’t receive any money from Unemployment in December or January.  In February, I received all three months worth in a matter of weeks.  This happened to be the month that Medi-Cal wants all of my info for their review…  Of course.
So, it looks like I’m rolling in the money according to February.  I got my letter today stating that I’m over the income limits and as of March 31st, my children will no longer be covered.  So, I guess I move forward and reapply for Healthy Families.  But now, if I don’t get extra checks the month that they want to see how much I make, they’re going to deny me and refer me back to Medi-Cal.  It’s such a stupid cycle to be stuck in.  It’s annoying enough with no medical issues, but throw in Diabetes, Celiac and all of the blood work, Dr.’s appts and supplies and this is just about overwhelming.

good morning!

C and I have a harder time than anyone I’ve ever met getting up in the morning.  We’re like Garfield, miserable and disheveled for quite a while.  Me until I’ve had my coffee and I’m still waiting to find somthing to help C snap out of it.  This morning was no different.  C slept in my room last night.  He doesn’t normally unless I suspect he was too active and might go low through the night.  Last night he just wanted to.  I’ve got a comfy bed, I guess.
This morning I dragged myself out of bed, tried to get him up, got my other cheery, morning-person son up and started the coffee.  I come back down the hall and find out that C has asked E to go pick out his clothes for him.  This was even lazier than usual!  Took forever to get him into the kitchen for breakfast.  “Sorry, son, you wouldn’t get out of bed today, I don’t have time to make you bacon, test and eat your cereal.”  He tests and I lean over to peek at the number.  59?  Holy moly, have some juice, no wonder you didn’t feel like getting up!  I told him we’d wait a bit before going to school to make sure he was a steady number.  His response?  “Does that mean we can make some bacon?”
Yes, it does.

rambling like crazy

This has been a really hard couple of weeks.  C’s blood sugar is nuts.  Couldn’t get a hold of the Dr., was just feeling completely overwhelmed.  I’m exhausted.  Physically, mentally, ever other way you could be exhausted too.
Last night I heard from the doctor.  She thinks that C’s feeling a lot of stress when I’m not there and is driving his blood sugar up from it.  At school in the mornings, he tests.  If he sees a number over 200 he starts retesting.  Sometimes every 5 minutes, 15 minutes, 30 minutes.  It really depends on how high the number is and how nervous it’s making him.  Then, he gets sent home, his limit at school is 400.  He never has ketones and drops back down by lunch or with a correction from lunch.  This doesn’t happen at home on the weekends.  We started some new rules.  He’s allowed to test once between breakfast and lunch.  If it’s a number that he’s worried about, he can go to the health office and test for ketones.  If it’s negative, he can go back to class and stop worrying.  If its trace, he can drink some water in class and we’ll retest at lunch.  If it’s any higher than that, he should call me and we’ll make a decision at that point.  I assured him that he’s ok.  He’s safe.  He’ll be fine.  I told him that even if it’s 500 but no ketones, he’s safe.  Apparently that’s what he needed to hear.  He tested at 9:00 this morning and it was 256.  This is high enough to usually start the testing frenzy.  But it didn’t.  He didn’t even go test for ketones.  Just waited to meet me at lunch at which point it was 101.  Love that!
At daycare, he took carbs before playing football (although he forgot to test first to make sure he wasn’t too high already), came home, tested at dinner and was 130.  Love that, too.  Looks like the anti-stress talk is helping?
Or is it the fact that the Dr. also said she wants me doing his injections for the next few days to see if it changes anything.  He doesn’t quite leave it in as long as I (&the dr./nurse) would like and maybe he’s not getting every last drip of insulin?  We’ll see.  It was a much better day though.
At bedtime, he tested and was 125.  Lovely.  Except since we want him to be at least 130, I gave him 2 glucose tabs and tucked him in.  Went to my room and thought… hmmm, what if it’s dropping though?  I waited 20 minutes and asked him to retest.  He just did while I was typing this and it was 60.  Jeez.  I knew there’d be a catch to all these nice numbers!  Usually this means it’s going to be a long night.  Lots of juice boxes and waiting.  I’m going to go ahead and start praying now that that’s not the case!
Besides all of this, the doctor also reminded me that absorbtion is issue due to the celiac disease and we may always have a rough road to travel on due to this.  She said his blood sugar will be much harder to manage because of it.  She also reminded me of how sensitive he is.  She said that some people are affected by insulin and carbs very smoothly.  Some people, no matter how little an amount of either, their body just absorbs it and becomes affected quite severly.  This would be him.  She said his body is working very crudely.  I give a unit of insulin and he drops low.  I give his 15 carbs and he skyrockets.  There’s just no winning.  Except for when we get the pump (knock on wood).  Those tiny tiny little amounts of insulin we’ll be able to give will be oh so helpful.  The bummer is, she doesn’t think it’ll be approved before his 6 months.  The good news is, they go by symptoms, not diagnosis.  That means we’re only 2-3 weeks away from him being a pumper.  It coincides with my birthday and I can’t think of anything I’d like more this year.