Tag Archives: family

Diabetes, family, JDRF

Not your imagination, they are getting younger…

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This is the 2011 June Island Parent magazine profile of the JDRF youth Ambassadors I wrote.  Over the next few weeks I’ll put up profiles from previous years.

The first years of introducing an infant to the world have special challenges. In those precious first few months a new mother finds herself second guessing every cough or sniffle: is it diaper rash or an allergic reaction?

There are the obvious moments, when the baby spikes a fever or projectile vomits across the room. There is no special knowledge needed at that point to reach for the car keys and head to the hospital. But what if the baby is breast feeding more frequently, always hungry and soaking through more diapers than maybe she did the week before. Is this just another growth spurt or is it just the sleep deprivation talking, dear. You’ll feel better after you have a nap.

A week before Christmas, 2010, 11 month old Tula Stanley, who never napped, suddenly wanted to lie down in the middle of the day.  When she woke 3 hours later she didn’t want to eat and began to vomit. Wondering if it might just be a bug Samantha waited till the next morning. Tula was still sick the next morning, listless and not responding in her usual active way. They went immediately to their doctor.

On hearing Samantha’s brother Travis was diagnosed as a Type 1 diabetic at 6 years of age, the doctor immediately sent them on to the hospital. It took 3 hours for the medical team to find a way to place an intravenous line in the 11 month old baby: shaving her head and finally going in surgically to reach a vein in her upper thigh.

For the first 4 days it was necessary to weigh Tula before and after breast feeding in order to calculate the amount of insulin she would require. From that the staff worked out the carbohydrates Tula was averaging.

Nearly 6 months later, Tula is thriving: active and awake every two hours through the night to nurse. During the day, well, she has returned to her no-nap schedule and is charging headlong, halfway to her 2nd birthday. The other day Samantha saw her daughter standing in front of a mirror, trying to look at her insulin pump and where the needle goes under the skin of her little rump.

A year and a half ago Kristina’s 17 month old son was getting ready for all the changes a 2 year old faces. Then he began drinking large amounts of water and nursing almost constantly; Kristina felt herself being completely drained.

Initially the doctor assured her it was just a behavioral phase. After another 10 days of nursing and repeatedly changing Amos’s diaper through the night, Kristina insisted on Amos being tested.

By the time Kristina got home there were two messages from the doctor and one from the lab insisting Amos go directly to the hospital.

These tiny patients mean doses of insulin too minute to measure with a syringe.  Amos was 17 months old when he started on an insulin pump.  He still complains about finger pokes and needle changes but at 3 he is an old hand to it all.

There is hope for these young ones, however. They are living at a time of tremendous leaps in Type 1 Diabetes research: what causes it, what can be done to ‘turn off the switch’ and how to reverse the damage it causes.

Samantha sees a huge need for education so people can understand her baby did not bring this upon herself with a diet of candy and video games.

Kristina wants to tell families just starting to live with Type 1 that it does get better.

Samantha and Tula
Amos

government, health, Juvenile Diabetes, medicare

It hurts other places too

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direct costs for aproximately 1 month:

Pump supplies – infusion sets – $318

– syringes – $118.

test strips $ 75.00

insulin $135.00

Pharmacare is an interesting system. It covers some things but not others, lancets but not test strips, for instance or one type of insulin but not another. It was also ‘improved’ so that it doesn’t start covering drugs until a you’ve paid out a certain amount on your drugs. At that point it starts at a scaled percentage of the cost, gradually increasing the amount it covers.

It resets every January 1 and despite paying in over $1,200 a month with all our different prescriptions, we still haven’t hit the pharmacare threshold and it is the end of March.

A good extended medical plan helps a whole bunch, fer sure and I can’t imagine how families without one manage to cope with all the costs. Yes, it is evenutally, tax deductible but between refund time and the next year, most folk like to eat and maybe pay the rent and, believe it or not, go to the odd movie. Yes, poor folk deserve a movie now and then too.

If it wasn’t for our socialized health care system, we’d have gone under a long time ago. That is why, next to Dr. Banting, my big hero is

Tommy Douglas

But more about him later.

family, health, Juvenile Diabetes

wrestle a bear

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This was a column I wrote for the Esquimalt News, May 2005 and later used as a podcast on Babas Beach.

There is a long list of things I hate about my daughter’s diabetes. I mean things above and beyond the obvious ones of her having to puncture herself several times a day to measure blood sugars or administer insulin. Or all the things the future holds if my angel doesn’t keep her blood sugars in a reasonable range: blindness, kidney failure and limb amputation, to name a few.

Nope, there are a few other things, admittedly a little further down the list of concerns and irritations this pancreatic spanner caused when it was tossed into the general works of my life. Yes, I said “my life”. Sometimes, believe it or not, it really is all about me. If I can take on all the guilt and blame that goes along with the price of admission to parenthood, surely I can also lay claim to some sympathy time for those moments when my little bundles of joy bring home injured birds, weird friends, contagious diseases for which I have no immunity and the odd chronic illnesses for which there is no cure.

Yes, I know, she is the one with the insulin pump keeping her alive by means of a thin tube of plastic and a wicked long needle she has to re-insert every three days into another place on her tummy. She is the one who has to do the finger pokes and take insulin and get paraded in front of a series of medical professionals on a regular basis, every one of which asks the same questions and stress the same need to be vigilant about her blood sugars. Not only does she get the standard haranguing from parents about her homework, the current bio-hazard rating of her bedroom and “who was that boy you were talking to?”; she also has to put up with being reminded several times a day to do finger pokes, what was your last blood sugar, is it time to change your pump site, how many carbs are in that cookie and did you increase your insulin enough to take care of it?

Here is the true evil of this particular illness: it hits kids. From babies to teenagers it robs them of their childhood and burdens them with the dark truth of their mortality. If there is one thing I hate the most about this wretched disease it is that my daughter was robbed of those precious years of her childhood dreams of immortality. When she was 10 she had to grow up overnight and realize life could end for her in an instant.

How can this be about me, I hear you ask. Well, let me put it this way; ask any mother if she’d stand in front of a gun to save her child or face down any threat to her baby. I’m pretty sure most fathers would gladly arm themselves with a butter knife and fight a bear if it would save their little girls from one broken heart. Now, ask which will hurt more, a bullet, a bear or the knowledge there isn’t anything you can do to keep the hurt and the broken heart out of your baby’s life?

Being a parent of a child with diabetes means knowing he or she has to physically hurt themselves repeatedly throughout the day in order to stay alive. It means dealing with the emotional fallout when a well meaning adult- who doesn’t know there are three types of diabetes, two of which have nothing to do with the current catch phrase of “lifestyle choices” – teaches your daughter’s class that diabetes is caused by being fat, lazy and eating too much junk food.

Then there are those dear folk who insist on taking her or me or her grannie aside to tell us insulin only makes diabetes worse, she should be taking this vitamin or going to that naturopath or eat a diet of tofu and groats. Fortunately, my daughter has more sense than a lot of adults.

I guess it is more accurate to say we are a family with diabetes because it affects every single one of us. Even the dreaded big sister, who will smother me in my sleep for what I am about to reveal, knows she can’t protect her rotten little sister from this one cowardly bully. Hard to believe, I know but it’s true. One day at school her class was lined up for a vaccination against one of the many Ite-esses starting with the letter H. A girl in the line kept whining about why do they torture kids this way, gawd, like, the size of the needle, the pain, how sick she was last time…the usual things. My first born fixed this classmate with her patented dead fish stare and said “quit your complaining, friend, my sister has to do this four times a day. Be grateful.” She may have used a fewer words and slightly more pithy language but that was the gist of it. Now I have to go into the parent protection program.

Okay, there are a whole of things I really don’t like about juvenile diabetes. At this time of year, however, I’m supposed to be upbeat and talk about how close medical research is to actually sending this particular demon back to the seventh level of hell where it belongs. And it is; it really is getting closer every day. But close only counts in horse-shoes and hand grenades, as the old saying goes. And lab rats don’t work for free, y’know.

So, when it comes to my daughter I’ll swallow my pride, brow beat my co-workers, friends and family to pledge me in the June Walk to Cure Diabetes. Whether I like doing it or not, at least it is one way I have of actually doing something. And it is a little less painful than wrestling with a bear.

If you want more information, go to the website www.jdrf.ca . If you don’t have a computer, call the foundation, toll free, at 1-877-287-3533.

family, Juvenile Diabetes

It’s no longer “because I said so”

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How old where you when you realized that people die? And then how long did it take to sink in how permanent that change in status really is? Finally, how old were you when the penny dropped that if granny died, granpa died, your dog died and all those guppies died, then you also had an expiry date?

One of the problems with Type I is that it tends to affect kids before they’re old enough to have, in their own natural time, reached that stage of coming to grips with the concept of being mortal. This means when your child is diagnosed you have to speed the process by making it clear to them they either control their illness or they die. And exactly what that means.

Of course when they are still infants – and some are diagnosed at the tender age of 12 months and younger – you cannot make this clear to them. No, instead you must carry the fear for two. And then when they are old enough to start taking a little control over what they eat and maybe even do an injection or two themselves, then you have to, as gently as possible, as clearly as possible and as emphatically as possible impress upon them the nature of mortality to whatever limit their understanding is at the time.

For months after coming home, our daughter had trouble going to sleep. She kept asking me to lie down with her until she had dozed off. I knew the reason why but it still took time to get over the moment she told me she was afraid if she went to sleep, she wouldn’t wake up. Okay, I’ll never get over the moment: every morning when I go into to wake her, to tell it’s time to get ready for school, I hold my breath until I hear her sigh, rustle and make those sounds of waking complaint every teenager makes before putting feet to the floor.

family, health, Juvenile Diabetes

Good night nurse

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I learned of Trudeau’s death when taking a few minutes to grab a coffee in the parents’ lounge on the Pediatric Ward. It was my third day there – I’d been sleeping on the floor by R.’s bed each night until, finally, one of the nurses suggested I see if a bed was available in the parents’ quarters just down the hall. I suppose they’d hoped I’d go home each night but that wasn’t going to happen until I was sure she was out of the woods.

It was something I had to do. The thought of her waking up in the night – and she was being woken up two or three times a night for blood work at this point – surrounded by strangers was not a good one. After all she’d been through, the least I could do was be there when the nurse came around to take a little blood.

Once R stabilized on the insulin and her fluids were back up, they took out the IV. It had been very handy for all the blood tests needed to keep up on her metabolic state of affairs but IV sites are notorious for infections. So, for some blood work they could get enough by warming up her fingers and using a large lancet, milking the blood into small vials. For most of it, though, the quantity needed really called for getting it from the arm. The inside of her elbows were getting pretty chewed up from all the needles the blood work required.

On the third night it was a new nurse who came around with the tray. She seemed a bit put out at having to come to the ward – maybe she’d planned a nice quiest night, maybe she’d been held over on her shift, I don’t know but there was an attitude I hadn’t seen in any of the other blood-letters.

She grabbed R.’s arm, looked at it, snuffed. Went to the other side and grabbed that arm, snuffed again. With a heavy sigh she took up her needle and started the tie-off. She inserted the needle, muttered – she’d missed, pulled it back a bit and pushed again, muttered, pulled it back and angled another way. By now R was getting distinctly uncomfortable and was whimpering. I was appalled at what I was seeing and gripped the bed rail to keep from leaping across the bed to grab the woman by her throat.

She clumped over to the other arm and started again. Same thing, pulling back and angling another way, pulling back, angling. R was in tears now. The nurse just tossed her gear on the tray and said someone else would have to give it a try, she wasn’t getting anywhere and off she went. I was shaking by this point, followed her out and went to the nurse station.

“I don’t ever want that woman to touch my child again.” The nurses looked up in total surprise. They had grown used to my being there, sleepy at times, encouraging always and making little humorous comments to keep spirits up but this time I was white. “If she comes near R., I will put her through the wall.” One of the nurses came with me and took a look at my dear’s little arms which were actually swollen to the point she couldn’t bend them anymore. I described what I had seen. The nurse said that I could have told her to stop at anytime and that protocol is if the needle misses on the first try, it is to be removed completely and the other arm used.

She called up another phlebotomist – a sweet, obviously gay male nurse. He took a look and was shaking his head. They’d have to use finger vials because there was no way any of her arm veins could be used with all the swelling there. He apologized profusely and said he would make sure to take care of R. himself from now on for any night time blood work.

The ward nurse confided to me that the other leech, the night butcher, as I took to calling her, had a reputation for being impatient with children. She wasn’t usually called out to the ped’s ward. All I knew is she wasn’t going to be allowed within sight of me for a very long time.