Diagnosis is just the beginning....

I feel like there's so much more to our diagnosis story than what I've already written.  Realizing that something was wrong and identifying what that something was doesn't even begin to tell the story.  And it's probably not even the most important part of the story.  So, here we go...the rest of the story:

Lily was admitted to her room after 10:00 at night on August 10th.  Poor Leo was exhausted by that point.  Luckily, he was still mostly just breastfeeding, so at least he hadn't gone hungry!  I walked up to Lily's room with my husband and Lily and had to immediately head back down to our car with Leo.  Leaving Lily there was one of the absolute hardest things I've ever had to do!  For practicality, I knew my husband had to be the one to stay with her.  But the mom side of me felt like she needed me more.  Or maybe it was just the fear of falling to pieces that made me want to be the one to stay.  I knew that as long as I was there with Lily, I couldn't afford to let myself shatter into a million pieces.  I had to hold it together.  The hospital Lily was admitted to was a good 25 minute drive from home.  To be completely honest, I probably shouldn't have been driving that night.  Imagine this....10:15 at night, it's pitch black, middle of Minnesota's "other season" (road construction), I have a 7-month-old child asleep in the backseat, and I'm sobbing my heart out as I drive past my exit.  Not the best situation.  But I made it home safely, put Leo to bed, and then sat there, unable to sleep and still crying.  I think I finally managed to cry myself to sleep at some point, just a few hours before having to return to the hospital for the education sessions that they give parents of newly diagnosed children.  Those poor educators and doctors!  I don't think they quite knew what to do with us.  How do you educate a parent of a diabetic who has had diabetes for more than 20 years herself?  I tried to encourage them as much as I could to do as they normally would.  I may have been diabetic for a long time, but for my husband, it was quite different to go from being the spouse of a diabetic to the parent of a diabetic.

For us, the hospital stay was probably the worst part.  We were at Children's Hospital in St. Paul.  An excellent hospital.  But there was one major problem.  The protocols for how to deal with a diabetic patient don't take into consideration the differences between a toddler and a school-aged child.  We had some major issues.  As most parents know, toddlers eat.  Often.  Their little tummies don't hold much and Lily was still in the 2-hour eating pattern.  Every two hours, she wanted something to eat.  She was hungry.  The nurses would only give her low-carb foods.  And they'd often forget to bring her a snack altogether.  At one point during our two-day stay, Lily was so hungry and frustrated about not getting anything to eat and not being able to communicate what she needed that she started banging her head on her hospital bed!  Would you believe that my heart breaks more over that than over her diagnosis?  The nurses did try as much as they could to accommodate Lily's needs, but sugar-free Popsicles and  meat and cheese trays were just not cutting it for Lily.  Luckily, her stay only lasted two nights and on the second day, we were able to take her home, after a quick (or, not-so-quick) stop at the pharmacy.

Now THAT is where the story really starts.  Bringing home a diabetic child invokes nearly the same emotions as bringing home a newborn.  The fear and anxiety over doing something wrong, of forgetting key concerns, of failing to adequately care for your child.  It all comes rushing back when they give you all these new rules for providing for that child.  In an ideal world, we would be able to follow every instruction that the doctors gave us.  We'd be able to care for our child perfectly, controlling their blood sugars to make it possible for them to feel as normal as they are able to.  We'd be able to feed them the snacks we were told to feed them, balanced and nutritious meals that are prepared with love and care to give the best balance for their little diabetic bodies.  But this isn't a perfect world and what you wish your child would eat is not always what your child wants to eat.  My husband really tried hard to offer Lily all low-carb snacks.  Lunch meat, cheese slices, carrots.  We quickly discovered that when your diabetic weighs less that 30 lbs, there is no such thing as a "free-food".  Even four grams of carbohydrates would shoot Lily's blood sugars to the moon.  And she quickly got burnt out on meat and cheese.  She wanted fresh fruit.  Every time she ate, we would have to give her an injection.  Which meant we also had to make sure that every time she ate, she consumed at least 20 grams of carbohydrates.  If we didn't give her insulin, she'd be horribly high.  If she didn't eat enough carbohydrates, she'd go low.  And really, no matter what we did, her blood sugars never fell where we thought they should.  It drove us nuts and the stress of it started to take a real toll.  We got snappy with each other.  We became sleep-deprived, stressed, unhappy.  None of that was Lily's fault and none of it was because of her diabetes.  We both had some serious coping-flaws and needed help figuring out what to do with our new reality.

Is it awful of me to say "to be continued" at this point?  It's getting late and I need to get some sleep.  But I do plan to return and tell more of the story.  It's cathartic to get it all out!  To anyone out there reading, thanks for sticking with it!  I hope I'm not boring anyone to tears!

Avoidance...

Dear Blog,
I've been avoiding you.  We're coming up on Lily's one-year anniversary of being diagnosed and I know I need to write down the story of that awful day.  But I don't want to think about it.  I don't want to relive it.  So I'm avoiding you and putting off the inevitable.  Now that I'm done with my Christmas in July craft exchange gifts (which I will post pictures of later!), I have no more excuses for avoiding you.  So...here I am, to recount and relive the events that brought my world crashing down around me.

These are pictures of Lily.  I took them around 2:30 p.m. on August 10, 2009.  I remember thinking just how adorable it was that she'd fallen asleep in her Elmo chair while watching a show.  She'd given up on napping and was very rare that she'd even randomly fall asleep.  And there I was, as her mommy who should have known better, thinking it was adorable and she must have just worn herself out, playing with friends at a play-date that morning.  I thought nothing of it.  Until she woke up from nap around 3:15 and asked me for a juice box.  I'm not big on giving the kids juice, but I'd just recently bought some organic juice pouches by a brand called Honest Kids.  Lily hated them!  They were bland and flavorless, like severely-watered down juice.  But she woke up and asked for one anyway.  I handed one to her.  She sucked the entire thing down in about two minutes flat. She asked for a second juice box.  I gave her one.  Two minutes later, the box was empty and she wanted a third.  You know that feeling you get when you just know something is wrong?  In that heartbeat when you realize that the house you thought you'd built with bricks is actually constructed of playing cards and they're all falling down around you?  That was my moment.  My world crashed down.  I knew.  I didn't want to know, but I did.  Being diabetic myself, I pulled out my own meter and checked her blood sugar, hoping until the very last second that it would show me something other than what I was expecting.  Five seconds later, HI flashed on the screen.  I tested Lily twice more, hoping it was a fluke.  Maybe her fingers were sticky.  I tested with a toe.  HI.  Maybe she'd stepped in something sticky.  Third time would be the charm, right?  HI.  I picked up the phone, crying and nearly hysterical, and called my husband.  He was just getting ready to head home from work and I had to break the news to him over the phone.  I told him Lily's blood sugar was over 600 and I was getting the kids ready to head off to the ER.

My poor husband.  He's much calmer in bad situations than I am.  I freak out first, then take a breath and start dealing with the situation.  He deals and saves the freak-out for later.  He met us at the ER and we sat there, waiting to be called back.  I wish I'd had the presence of mind during all of that to think of just common sense things.  Lily hadn't eaten anything since lunch.  We didn't make it into a room until nearly 6:00.  Two hours in an Emergency Room waiting area is just too much for a 2-year-old girl.  Especially without anything to eat.  I kept getting her more water to drink (high blood sugars = excessive thirst).  But no food.  Four hours later and after being forwarded on to a new Emergency Room (our local hospital doesn't deal with pediatric diabetes, so we were sent to St. Paul's Children's Hospital), I finally had the presence of mind to ask the nurse for something for Lily to eat.  At 10:00 p.m., Lily was finally admitted into her own hospital room and we were able to get her settled in to sleep for the night.

I have many regrets over that day.  I wish I'd been calmer.  I wish I'd thought more about what Lily might be feeling, other than that she was sick.  I wish the day had never happened and that Lily was still the healthy, non-diabetic child I had wanted her to be.  I sobbed for two days straight, whenever I was alone, which was a lot since I was still breastfeeding a 7-month-old Leo and my husband was the one staying at the hospital with Lily.  I wish I'd been able to be the one to stay at the hospital with Lily.  So many wishes and all the wanting in the world won't make a single one of them come true.  But here's the thing....when life throws something like this at you, there are always other things happening around you that can help put your situation in perspective.  During the two days that Lily was in the hospital, I talked a lot with my family.  One of my sisters is a nurse in a rural area of Minnesota.  During a conversation with her, she mentioned a classmate of mine and the situation that his family was going through.  He had a daughter nearly the same age as Lily.  They'd received the news just a couple of weeks before that their little girl was very sick.  Leukemia.  Two weeks was all they got.  Two weeks with their beautiful little girl before having to say good-bye to her.  Perspective.  How horrendously heartbreaking it would be to go through that.  After hearing that, there was one thought that stuck in my mind.  I can deal with anything.  Diabetes is a challenge, especially when it's striking at your toddler.  But diabetes is life.  Diabetes is nothing compared with leukemia.  I can deal with this.  

Just one more thought to leave with everyone and anyone who happens across my blog...parenting is difficult. But, oh my, is it worth it!  Having a child will break your heart daily.  Shatter it into a million pieces.  And in the same heartbeat, it glues all those pieces back together in a new and more complex and amazing shape.  Glues it back together stronger than it was before.  Someone who doesn't have children yet can't imagine and there's no way of describing the bitter-sweetness that having a child adds to your life.  Someone who isn't a parent can't may look at the story of a family saying good-bye to a child and decide that the heartbreak wouldn't be worth it.  But those of you with children know that one minute with that child is worth so much more than a billion minutes without.  No parent would willingly choose to not have had their child, no matter how short of a time they have with them.

My brick house may be made with cards and may have crashed down around me, but it can be put back together again.  And the new house is so much bigger and better than before.

Bugs, bugs, everywhere!

Life has a way of making sure you never get complacent, doesn't it?  I had to make an unexpected trip to Lily's pediatrician's office yesterday.  Lily had a couple of bug bites that looked kind of odd.  Round, red bump for the first couple of days.  Normal.  But then they turned into little red bumps in the middle of a round, red circle.  We never did find the bug that bit her and have no idea what kind of a bug it was.  But since this is Minnesota and you can never be too safe where bugs are concerned, her doctor is treating it as a possible Lyme disease infection.  Two weeks of antibiotics.  For a normal child, this probably wouldn't be much of a problem.  For a diabetic child, it's usually not so simple.  You see, diabetic children tend to have a sweeter body chemistry than other children.  You kill off the good bacteria along with the bad bacteria and there's nothing left to keep the yeast in check.  So, the two-week wait begins...we'll finish up the course of antibiotics and most likely need a second trip to the doctor in order to deal with a yeast-overgrowth, possibly in the form of thrush.

For all you other d-moms out there, a simple equation....DIABETES + ANTIBIOTICS = NOT A GOOD COMBINATION!

At least I'm not too worried about the Lyme disease though, right?  If that is what her bites are, we're catching it very early.  She's shown no signs of fever or of being ill yet.  Just the bites.  Here's to hoping it all clears up quickly!

A little of this and a little of that....

I've been busy.  My husband has been on vacation from work for the last week, which has been fantastic since he's let me sleep in so much!  Nothing like catching up on all that missed sleep, right?  I've also made the mistake of signing up to take part in two Christmas in July craft exchanges.  I'm late sending my crafts out and still need to work on finishing them up quick.  And the friends of my husband's that I was working on a baby blanket for had their baby three weeks early, which meant I needed to finish up the blanket quick.  It's amazing how things can just pile up sometimes, isn't it?  So, here's a few pictures of what I've been working on and a few tips for d-moms....

My very first baby blanket

The matching hat

Now for the tips....you know how hard it is to deny a 3-year-old diabetic child a snack when they're in the midst of an insulin reaction, even after you've given them enough carbs to cover the reaction?  Well, here's our solution to that:

Lily loves her pickles!

I'll post more when I've finished my craft exchange projects.  Need to finish them and get them off in the mail.  I just have to hope that the recipients of them think they're worth the wait!

Faces of Diabetes

Channeling Pink Floyd

I've had that Pink Floyd song running through my head for days now...."all in all, you're just another brick in the wall".  It kind of fits the situation lately, but not quite.  For the situation at the moment, it should be, "all in all, it's just another brick wall".  All you other D-moms (and dads) know what I'm talking about.  You're cruising along, things are going great, blood sugars are looking good.  And, all of a sudden, a brick wall pops up!  Blood sugars are running high, child is eating everything in sight or nothing at all, you're picking your brains and pulling out your hair as you try to figure out what went wrong and what should be changed.  It's so frustrating!  Right now, it's not a brick wall we're facing, but a bottomless pit.  Lily's blood sugars are plummeting several times a day.  I know part of it may just be that we're in the midst of summer.  We're busy, running around, swimming in the pools, and just generally taking advantage of the heat.  My husband is on vacation from work this week.  He was in desperate need of a mental health break.  So we have a busy week of activity ahead.  Today, we went to the zoo.  We LOVE, LOVE, LOVE the zoo!  The monkeys, the dolphins, the fish, the birds.  It's so much fun!  Interestingly enough, one of the birds featured in the bird show today was named Pink Floyd (he had a bright pink belly).  We tested Lily when we got to the zoo....49.  Gave her 20 grapes and only bolused for 8.  Normally, that should send her blood sugar to the moon.  Two hours later, she was 78.  Gave her a second lunch of a corn dog, which she gobbled up in record time, leaving just a few bites for her daddy.  Tested her again a couple of hours later, as we were leaving...136.  Fast-forward to bedtime.  Lily managed to cram in 28 more grapes.  We gave her enough insulin for 20 of them, because it makes my husband nervous that she might go low at night.  Apparently, he was right.  Bedtime check gave us a blood sugar of 38!

I used to love roller coaster rides.  I want to know where the exit is for this one?  I'm not enjoying it!  I know that this is likely the start of another growth spurt.  She's about due to shoot up another inch or two in height.  But now I need to figure out...do I decrease her basals for the next few days to get her back on track, even though I know her blood sugars will sky-rocket in a week as the growth spurt slows down?

A picture from the zoo:

Aren't they cute?  You might actually think that they love each other!

Just a little side note....
I used to do this thing in an on-line forum that I participate in.  Basically, in the middle of our daily chat area, I'd share some of my "Observations from the Gym".  I have a hard time getting myself to go to the gym sometimes, even though I find it so entertaining.  Seriously, I always come away with some interesting stories.  Like the time an elderly lady warned me that there was a "man" in the locker room.  She followed that up by asking the gym staff-member, "are you a man?"  Nope, just a flat-chested woman with a very short haircut.  Here's my observation for today:

I find people in the parking lot of the gym so incredibly funny.  They troll through the parking lot, looking for the closest parking spot possible.  I can understand maybe in the middle of winter when it's freezing or when it's raining.  But today was a wonderful, breezy 77 degrees.  Gorgeous.  And yet they still troll through the parking lot.  One person took it to a whole new level today though.  Apparently, all the special motorcycle parking was taken when he showed up on his bike.  So, instead of just using a regular parking spot, he parked on the sidewalk, directly in front of the gym!  Seriously, you go to the gym to exercise, but can't be bothered to walk from the middle of the parking lot?  Imagine how much more exercise you'd get if you parked at the back of the parking lot! 

Another Medtronic News Release

News Release


Medtronic Media Contacts:

Jeff Warren, Investor Relations, 763-505-2696

Amanda Sheldon, Public Relations, 818-576-4826





Medtronic Begins Enrollment in ASPIRE Pivotal Study of Low Glucose Suspend Integrated System



Semi-Closed Loop System Designed to Reduce Severity and Duration of Hypoglycemia







MINNEAPOLIS – June 25, 2010 – Demonstrating its dedication to close the loop for diabetes management, Medtronic, Inc. (NYSE:MDT) today announced that the first patient has been enrolled as part of the ASPIRE study of the MiniMed Paradigm x54 System featuring Low Glucose Suspend automation. Low Glucose Suspend works by automatically suspending insulin delivery temporarily if blood glucose levels become too low as defined by the patient and his or her healthcare provider and is a feature available commercially in Medtronic’s Paradigm® Veo™ System in more than 35 countries outside of United States.



ASPIRE (Automation to Simulate Pancreatic Insulin REsponse) is a multi-center, randomized, investigational device exemption (IDE) study designed to assess the efficacy of the MiniMed Paradigm x54 System Low Glucose Suspend function in reducing the duration and severity of hypoglycemia (low blood glucose). Hypoglycemia is a common occurrence and concern in diabetes management and can result in confusion, unresponsiveness and – in rare cases – even death.



“Hypoglycemia is the greatest fear and biggest hurdle in achieving better glucose control in patients with diabetes. Until now we have never had a therapy designed to automatically intervene when blood glucose becomes dangerously low,” said Satish K. Garg M.D., professor of Medicine and Pediatrics, Barbara Davis Center for Childhood Diabetes. “The new Low Glucose Suspend integrated system is intended to close the treatment loop, ultimately reducing the risk of hypoglycemia even when a person is asleep or unable to react.”



Medtronic’s MiniMed Paradigm® REAL-Time Revel™ system is the second generation of the only integrated insulin pump with continuous glucose monitoring system cleared by the U.S. Food and Drug Administration (FDA). With the MiniMed Paradigm x54, Medtronic has designed a first-of-its-kind semi-closed loop system that not only features insulin delivery and CGM sensors, but also advanced software algorithms that enable the Low Glucose Suspend automation. The integrated system and low glucose suspend automation are the first key steps towards the creation of an artificial pancreas.



“The commencement of the ASPIRE study is the result of extensive interaction between Medtronic and the FDA to identify the clinical data required for FDA approval of our Low Glucose Suspend integrated system, an innovation we believe has the potential to transform the way diabetes is managed,” said Katie Szyman, president of the Diabetes business and senior vice president at Medtronic. “Building on our commercial success with the Veo in Europe, we look forward to the opportunity of bringing yet another new and important ‘first’ to U.S. patients for whom hypoglycemia is a significant and constant concern.”



Hypoglycemia can be one of the most frightening aspects of living with diabetes. Research has indicated that, on average, a person with diabetes will experience more than one low blood glucose event every two weeks. In addition, each year nearly one in 14 people with insulin-treated diabetes will experience one or more episodes of severe hypoglycemia.1 The landmark Diabetes Control and Complications Trial showed that severe hypoglycemia is more common in adolescents than in adults, and hypoglycemia has been shown to be a risk factor for reduced cognitive functioning among the pediatric patient population.2,3



About the Diabetes Business at Medtronic

The Diabetes business at Medtronic (www.medtronicdiabetes.com) is the world leader in advanced diabetes management solutions, including integrated diabetes management systems, insulin pump therapy, continuous glucose monitoring systems and therapy management software, as well as world-class, 24/7 expert consumer and professional service and support.





About Medtronic

Medtronic, Inc. (www.medtronic.com), headquartered in Minneapolis, is the global leader in medical technology – alleviating pain, restoring health and extending life for millions of people around the world.



Any forward-looking statements are subject to risks and uncertainties such as those described in Medtronic’s periodic reports on file with the Securities and Exchange Commission. Actual results may differ materially from anticipated results.



References

1. Leese GP, Wang J et al. Frequency of severe hypoglycemia requiring emergency treatment in Type 1 and Type 2 diabetes. Diabetes Care 26:1176-1180, 2003.

2. Diabetes Control and Complications Trial Research Group: Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: Diabetes Control and Complications Trial. J Pediatr 125:177–188, 1994.

3. Matyka KA, Wigg L, Pramming S, Stores G, Dunger DB: Cognitive function and mood after profound nocturnal hypoglycemia in prepubertal children with conventional insulin treatment for diabetes. Arch Dis Child 81:138–142, 1999.



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Medtronic, Inc. 2010