RIP Pump #1

On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.

Yes, that’s a small lake of water in the bottom of the screen

*Yes, the Ping is waterproof.  Yes, I’ve let him swim even with the new one already.  No I don’t think it’s a problem.  C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park.  I completely trust its waterproofness.  I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in. 

I called Animas and a new pump was scheduled to be delivered the next morning.  It would end up being about 18 hours later.  I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give.  I didn’t hear back from anyone for about 3 more hours.  Only 15 hours left until he should be back on a pump.  As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game.  I did not want to deal with overlapping the Lantus and the pump’s basal.  I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started.  I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun.  I wanted “easy.”

This may or may not be for everyone, so please don’t take advice from me…  I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US)  It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).

At bedtime his number was 117 and he wanted something to eat.  It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction.  I was torn as to whether or not he should give another shot.  I decided against it being that we’d be correcting soon enough.

When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine.  I moved his blanket to find his hand and immediately it hit me.  My son looking so perfect was falling apart on the inside.  I knew his body was being ravaged from that stupid GoGurt he ate.  I realized how the pump masks the issue so well.  Sure there are highs and lows but they always seem so easily treatable.  Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard.  My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.

I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep).  Two hours later he was in the low 200s with no ketones and had to get up to give another shot.  He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium.  It’s really interesting seeing how the body reacts when it’s in shock like that.  His numbers were actually super manageable.  Not what I’d expected.

p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave.  Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well.  He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump.  What a blessing!

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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.

Helping the Emotional Side

I’ve been mentioning lately what’s been going on with C.  He’s felt pretty normal and accepting of his diabetes and most aspects of celiac disease from the get-go.

When he started basketball, I wanted to lower his basal while he played.  But C wanted to step outside to pull his pump out and make the changes.  And he wanted to test in the car before we went in and back in the car after the game.  It was the first time I’d seen him attempt to hide his diabetes.

I saw him clearly uncomfortable at the basketball party that I’ve already been writing about too much lately.  He sat with US to eat instead of at the “team table.”

He’s mentioned “just eating gluten” a couple of times lately after a pretty big break of not mentioning it.

He’s falling behind in school.  He gets sent home for a high blood sugar (I’m talking 4-500s when he comes home and I believe its’ stress-induced).  He misses class assignments and lessons.  Teachers don’t send work home.  He goes back lost, gets stressed, high blood sugars follow and I get a call to pick him up.  Vicious circle much?  He thinks he’s stupid.

Two of his best friends who lived on our block have both moved away in the last two months.  One to another city.

He’s been getting more and more short-tempered and not wanting to do anything fun.  Video games are about all he’s been interested in.

I finally put him in counseling this week.  It’s been at the top of my to-do list since he was diagnosed with diabetes and felt even more urgent after adding celiac.  He had crummy insurance for a while which wasn’t covering it and I couldnt’ afford it even though I didnt’ feel we could afford to not do it.  His insurance was switched but then LIFE got in the way and I just wasn’t giving it the priority I knew it deserved.  The other day he came home in a bummer mood again, we ended up in an argument of homework of all stupid things and I knew I needed to do something.  I started making calls to insurance and counselors that day.

I expected serious backlash.  I’ve mentioned it before and gotten it.  This time I explained to him that he hasn’t seemed happy with anything.  School seems to be making things worse and that he deserved a great, happy life.  I told him he’d been handed a lot of difficulties that would be hard for anyone of any age to deal with and that to expect it to be easy would be silly.  I told him that no matter how much I love him, a lot of our attempts at talking about school or attitudes or whatever else turn into arguments or door slamming.  I told him he needed to have someone safe in his life.  Someone he could always talk to and never worry about it turning into an argument.  I told him he had an appointment with a counselor and that we were definitely giving it a try.  I said it was my job to make sure he had the happiest life possible and this is my next attempt to make sure of that.

He said, “I don’t really want to, but I’ll try it.”

We went that night.  I went in with him to explain that he had been diagnosed with diabetes, celiac and ADHD (with no hyperactivity, but inattentiveness…another  thing nobody ‘gets’ they all think he should be bouncing off the walls if he’s got it) all in one year.  When he asked C questions, he responded.  He had a smile a few times when we were there.  It seemed hopeful.  I’m just so happy that he seemed so responsive.  It means that this is going to be a positive help that much sooner.

highs, lows and nights

Highs, lows and nights.  I hate ’em all.  I also hate making changes to C’s pump.  It’s just never simple.  I love when the doctor does it. 

This time, she was content with his numbers and only wanted to try to change his carb ratios slightly and one of his overnights.  I didn’t agree.  I thought his overnight change was too much and his daytimes definitely needed a change.  Anyways, night (12am-4am) went from 0.55/hr to .60/hr.  When I got home, I compromised and put it at .575/hr.

He woke up the next morning at 58.  I’d actually turned it DOWN to .55 from .575 about 2 weeks ago when he woke up at 45.  Needless to say he’s back at .55 but we need some normal nights to see if that’s even working.  Normal meaning I’m rested enough to actually wake up to my middle of the night alarms and check.  oops.

The other problem is he’s going really high around lunch time.  He was being sent home over 400 a few weeks ago, I made some changes and now he’s typically in the 200s.  I didn’t know what to do next because about 1/4 of the time, he’s low at the same times.  Doctor didn’t want to change either.  Ughhhh.  Soooo, I changed them again realizing I had the weekend to see if he went low or not.  So the breakdown is this.  Same night basal. First thing in the morning (4a-8a) it’s higher, mid-morning (8a-11a) is higher, lunch and dinner get more per carb.  I had my fingers crossed yesterday that he wouldn’t go too low, too many times.  I warned him to keep checking because he doesn’t feel many lows lately until they’re about 50.

We kept checking the last being 3pm and things were actually still highish, but nothing crazy.  5 pm he made some scrambled eggs for dinner and tested at 560.  HUH?!  Washed hands and tested 2 more times.  522 and 502.  Fuuuuuck.

Corrected (more than I’m ever comfortable giving), changed cartridge/site (was due for change anyways), retested in an hour, still over 400, corrected again.  Took shower, tested, corrected again.  At this point it’s coming up on bedtime and I told him, “I gave you an awful lot of insulin.  I’m afraid you might go low tonight, want to sleep in my room?”  He didn’t…  So I told him to double-check there was juice on his nightstand and remember to use his doorbell  (which has only been used once) if needed and set lots and lots of alarms hoping at least a couple might get me up.

About a minute later, E runs in very excited and says, “I get to sleep in C’s room tonight!” and runs out.  I wonder if C actually thought it out and decided he was safest having someone with him or if he invited him subconsciously.  Either way, if he doesn’t want to stay in mom’s room, I’m glad he’s got someone to keep him feeling more comfortable.

Thankful for Our Team

When C was diagnosed with diabetes, the hospital told us we would follow-up with an endocrinologist at UCLA (an hour+ away) and we would go there quarterly.  Later they came in and told us we’d be seeing another doctor instead.  She was in our city but was not an endocrinologist.  She was a regular pediatrician, but specialized in diabetes and ran a pediatric diabetes clinic once a week.

I wasn’t sold.  I’d only known what diabetes was for about 3 days and now they want me to go to a regular doctor instead of the endocrinologist I’ve been reading he should go to?  They assured me it would be fine.  The first time I met her, I knew she was the right choice.  She laughed with me at my panicking and helped me to relax (this was 5 days after leaving the hospital).

Dr. S ‘gets’ me.  She laughs at me when I’m nuts.  She doesn’t take offense at the humor I tend to use or my constant sarcasm.  She understands which things I take very lightly and the things I take very seriously.  She understands that C is 11.  She understands that if I find a stash of candy hiding in the back of our Tupperware cupboard that I should be thankful that sugar is all he feels he needs to hide from me.  In fact, her suggestion was to fill that stash spot with his favorite candy.  Just make sure to leave the carb count in there as well.  She speaks to C directly, understanding that HE is her patient and HE needs to be a part of all decisions.  Although she does not have diabetes, it is in her family.  Her sister has celiac disease.  I have not only her home phone number, but her cell.  She was fine with the fact that it’s taken me over a year to want to wait 3 months in between visits (this will be our first time… so far it’s been 8 weeks and I’m feeling ok).  She’s been fine with the 6-8 week schedule I’ve been comfortable with.  Although, some parents I’ve spoken to feel she’s too controlling, she respects me and will rethink things if I disagree.  She asks C to give her lessons on the Ping since he was her first patient to stray away from her comfortable MiniMed.  She asks us to speak to newly diagnosed parents or parents wanting to start pumping.    She calls C her ‘special patient with a special situation’ to the learning doctors who follow her because he has not only diabetes, but celiac disease and happens to be her only patient with both (by the way, he loves this attention).  She loves how well we’ve adjusted and how much we’ve accepted diabetes into our lives.  Sometimes I wonder if she has any idea how big a part she has to do with that.

Yesterday, we had to go to that original doctor at UCLA (an insurance formality… once a year).  There was nothing personal.  They didn’t share my sense of humor and looked at me like I was weird.  One doctor made a statement, I mentioned that our regular doctor had said the opposite and she said that’s why she recommends ‘not speaking with too many doctors.’  I didn’t like this.  Even though I love ours, I absolutely want to hear other opinions to help form MY OWN.  (At diabetes camp, I made sure I brought all my questions to the doctor there and asked WHY he disagreed with our regular doctor on certain things.  I can’t just put ALL of my faith in one person.)   This appointment felt like an assembly line.  Get in, see first doctor, wait, see nurse, wait, see second doctor, wait, see nurse, wait, see social worker, wait, see nutritionist, make next year’s appointment.  Phew.  Not at all like our normal one.  We see the nurse and doctor who KNOW us.  They ask about my other son BY NAME.  The nutritionist peeks her head in during the appointment to tell me she tried the gluten-free pizza I recommended last time and agreed it was DELISH!  The gastroenterologist walks down the hall and sees us.  On his way to his patient asks how everything’s been going diet-wise.  On our way out we might run into his general pediatrician who recognizes us and asks how both boys have been doing.

It’s clear that your team can make or break you.  Their attitude will shape yours.  There are amazing doctors out there.  My family is truly blessed that we have found not only an amazing endocrinologist (well, general doctor specializing in diabetes…), but gastroenterologist and even pediatrician.  I really don’t want to think of where we’d be without their support.

Eyes

Today was C’s first visit to the ophthalmologist since his diabetes diagnosis.  He was so nervous.  He’s scared to death of eye drops and panicked when I was telling him that they were going to dilate his pupils.

We chose the right doctor.

He was so calm and explained everything he was doing.  Was honest about the numbing drops stinging at first and even stayed patient while reminding C he needed his eyes open…

He talked to C about being a part of his diabetes team and how he and C would work together to do everything they can to make sure his eyesight stays with him forever.  He also showed him a model of an eye to show him exactly what he’d be looking at through the pupil.

It was really a great visit and now one more thing C’s overcome.  Next year he’ll have nothing to fear.

Oh, and even better: his eyes were perfectly healthy and his vision is 20/20.

Dr. B and C

I Love Today!

I had butterflies in my stomach all morning.  Scary, nervous butterflies.  C’s endo apt was today.  We’re supposed to get the results of his Thyroid Antibody test.  His thyroid was enlarged and he had a few other symptoms.  Not really a big deal in the long run, but still.  He’s tired of being diagnosed.  He’s so great at keeping a totally normal attitude despite the fact that he can’t eat most of the foods (gluten) that people eat around him, the fact that he has to prick his finger all day, the fact that he’s attached to a machine that delivers his insulin instead of his pancreas doing it.  It just rolls off his back like nothing.  But when he heard the idea of one more diagnosis when his life was just getting back to normal, he got pretty upset.  The idea of having to take pills scared him as much as the thought of needles did when he got the news about diabetes.  It was heart breaking.  Today we went to the Dr. and I was prepared to be as positive and light-hearted as possible to ease his pain when they broke the news.  Only they didn’t.  His levels were perfectly normal.  We cheered of course.  What a crazy relief!!
Then, onto the next order of business.  The last 3 nights C’s had some unexplainable high blood sugars.  I changed his infusion site and they got worse.  But… in the daytime they’ve been great.  Until today.  He came home from school about 9:30am with small ketones and BG 346.  I did not give a correction dose.  Dr. likes us to correct only at meals and bedtime and there would be no getting away with it even if I tried since we were going to see her.  Except and hour and a half later, while in the waiting room, he drops to 65.  What the?  Ok, so apparently the site is ok and the insulin’s working still?  Whatever, I’m still confused, but she was really excited to see the rest of his numbers doing so well!  She decided to wait before making any basal changes this time.  We’re just going to try a new vial of insulin.
Here’s the icing on the cake.  His A1C was 7.4.  It was 8.2 in November.  Before that, they did it in the hospital and didn’t bother tellling me what it was.  I wouldn’t have known what it meant at that point anyways…  BUT, I’m so excited because he’s been on the pump for a month and it’s changed everything.  I know that the majority of what brought it down happened in this last month.  Just imagine how much more improvement we’ll see on his next one!