Posts tagged carbohydrates

When Sugar Was As Sweet As My Baby.

While speaking to my dear friend, Janek, a very old photo came into my field of vision. It suddenly hit me as to why I couldn’t stop staring at it. It’s one of “those” photos where relatives and friends shake their head in disbelief and exclaim, “But..but..he just looked so..healthy!!!”

Yeah, well..looks can be deceiving.

The day this photo was taken…Lance, his Dad and I were in New Farm, enjoying a day of exploring the plethora of incredibly original and funky stores that Upper Brunswick Street is infamous for. This photo was taken at a cafe by Scott, who couldn’t resist taking a snap of our gorgeous baby. We’d just had a fabulous lunch after a blissful morning of shopping in Sunny Brisbane.

( It dawned on me that I can barelyremember what it’s like to sit down and have lunch without worrying if Lance had consumed enough carbohydrates to match the insulin already injected into his body hours earlier. I can’t remember eating a meal without giving most or all of my food containing carbs to Lance, in a desperate attempt to lessen the chance of a massive hypo in the middle of a city.)

 Food, Insulin, Nutritional panels…my brain is an entanglement of numbers and percentages, with a twist of fear and uncertainty intertwining through more numbers, and more percentages.  

However, in this photo, Lance was only seven, almost eight months old. I treasure this image. It was when Scott, Lance and I were a tight-knit family. No Diabetes, no mysterious symptoms present, just joyous times each and everyday. I used to long for Lance to wake up, I loved his company so much.

I remember other diners’ catching a glimpse of Lance, (who had just woken from a nap) and they simply couldn’t look away. That had always been the way with my baby-you had no choice but to be fixated by his huge smile and natural charisma that was already evident, even at such a tender age.

 Not one person would ever have thought that given a few months from that day, this baby’s rosy cheeks would be sallow and chalk white, his sparkling baby blue eyes sunken back into his head, dull and lifeless, and his warm expressive face crumpled with agonising pain.

So, here’s the shot that breaks my heart, yet reminds me how blessed I was to have that one, amazing, perfect year.

(Those little fingers had never been hurt in anyway, only smothered with kisses.)

I still have my baby, but he has had to fight so hard to become the amazing kid he is today. I’m watching him sleep as I type, and I can still see that baby in his “big boy” face. My favourite sound in the world is my son breathing as he sleeps.

Out of all of Lance’s pre-diagnosis photos, this one comforts me the most. It doesn’t make me sad, or bitter, or crave for a life free of Diabetes. It only reminds me just how lucky I am to have my son.

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The Hunger.

“When it is good, it is very very good…”

We are entering Week Four of pumping.

Things are progressing incredibly! Site changes are a breeze, with no infections to be seen and readings that are almost too good to be true. Hypos are nowhere near as savage and insidious as they once were.

Despite some initial hiccups, it feels like a lifetime ago when flexpens were responsible for dispensing Lance’s insulin. Today it’s all about five buttons and a Main Menu. It’s just so fantastic to have some of the worry taken out of diabetes.

“but when it is bad, it is horrid!”

As I am responsible for Lance’s blood sugar control and insulin administration, I’m the first to say that there have been some days (and very long nights) where I feel so desperately alone. When the pump beeps at me, and flashes messages indicating a problem, my heart jumps into my throat and I experience such overwhelming nausea, that, just for a nanosecond, I want to pack the whole thing up and hide it in my highest cupboard.

It’s about a week until our checkup with the paediatric endocrinologist. As we are still sorting out basal rates and a few other issues, we are fingerpricking up a storm. I want to be able to give the Doc the best representation of how life has been since we last saw each other a month ago, so I have carefully compiled all of Lance’s readings in his record book.

I’m yearning for unbroken sleep..At the moment, I’m averaging about four hours a night in total, and it’s nowhere NEAR enough.

Meanwhile, there is another issue that has me tearing my hair out.

Now, that Lance is receiving only Novorapid via his pump, he is stupendously hungry, all the time. I can NEVER satiate his hunger, no matter how much low GI, carb laden food I put in front of him. I can spend two hours in the kitchen preparing an evening meal, and upon completing every last morsel, he is STILL looking for something else.

I have tried halving his bolus amounts, thinking that perhaps I am being too heavy-handed with how many units of insulin I am permitting the pump to administer. It’s not that, as an hour later, he is sucking back water, and squirming around like he has several ant colonies scurrying all over his body.

We have a dog, and a cat. They have been wormed, but with the pump hoopla, I had forgotten to worm Lance. That was taken care of two weeks ago. So, no dearest Elder, he doesn’t have worms from our pets. Still, he craves carbohydrates only half an hour to an hour after a huge main meal. His blood sugar levels are hovering around the 5.5mmol/L-7mmol/L area about 80% of the time, (oh and believe me, for this, there is no adjective grandiose enough to explain how it feels to say “good riddance” to those horrid dips and spikes..) but I simply cannot keep his mind off what he can eat next!!!

(I have spoken to the Diabetes Educator about it, and she has suggested that it is possibly just the last part of his growth spurt, and to feed him what he wants, simply accounting for the extra carbohydrates he consumes by bolusing. )

A month ago, the first words Lance would utter were, “Good Morning, did you have lovely dreams?”

Now, he is plotting and planning what he can have for breakfast, and exclaiming how ravenous he is.

I am spending more time preparing food, then I am sleeping!

This is the only place where I can publically vent, as I can NEVER show Lance that I am privately frustrated with preparing feasts that would feed a small African village. It is starting to frustrate him also, as he is tired of brushing his teeth everytime he has to snack, and I can tell he feels remorseful that he has to continously ask me to find suitable snacks for him. As all food consumed has to be accounted for, he has to report to me so that I can administer the correct dosage. Sleep deprivation isn’t helping one single bit.

I have found myself having to bite my tongue when bedtime rolls along.

“Mum, if I brush my teeth again, can I please have a box of sultanas?”

Sigh.

The opportunity to actually speak to the endocrinologist and outline these concerns will be a such a relief. I know that the extra Novorapid and the out-of-whack basal levels are causing the hinge of my fridge to develop a squeak, but it will be SUCH a comfort to drive away from his office, knowing that the corrections he makes will reduce an appetite equivilent to the winner of Survivor.

Other than The Hunger, all things Diabetes are really looking up!

 

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Pre-Pump Troubleshooting

After years of reading success stories by the hundreds about people with Type 1 converting to insulin pump therapy, I am so delighted to announce that finally, it’s Lance’s turn.

After our last round of blood tests, I decided that I can’t compete with mimicking a functioning pancreas any longer. Therefore, with an exchange of a few sentences each, our endocrinologist and I decided that it was a smart move to pass the job over to the Medtronic Paradigm Real Time Insulin Pump.

It took only a few phone calls before just like that, Lance found himself booked into hospital. His pump is waiting for him there. We have an appointment with a dietician, then plan to check into a lush hotel, and casually meander over to the hospital the following day.

However, it seems that Lance maybe a not quite as eager as I thought he might be.

I could instantly tell that something was bothering him late last week. Everytime I have mentioned the pump, he will either change the subject, or just switch off.

Over the weekend, I used some reverse psychology to get to the root of the problem.

“You know what, Lance? I’m a bit worried that you aren’t going to be able to have comfortable sleeps when you have the pump…do you think it will be annoying?” I asked, as innocently as possible.

“OH Yes, MUM! I have been worried about the exact same thing! I am scared that it will get tangled up and it will get ripped out and I will bleed all over the sheets!” he blurted out. He looked SO relieved to finally have heard himself say it.

“Well, I remember when you wrote to Brendon, and talked to him about the pump. He said that it isn’t uncomfortable at all. He would know, because he has had his pump for a long time now.” I said, grabbing my laptop to find Brendon’s email. (Brendon is Lance’s penpal who lives in America.)

“Oh yeah. That’s right. I forgot about that. What if the pumps in America are different to the ones in Australia?”

“Your pump is made in America, so it will be just like Brendon’s.” I could tell that Lance was feeling a little better.

“Mum?”

“Yes?”

“Is it okay if we don’t speak about the pump for a little while? I’m really over hearing about it. I just hope these nurses and doctors know what they are doing..” he said, complete with furrowed brow.

I held in stifled laughter, and assured him that that’s their job; to help people with their insulin pumps when they come to hospital, and make them feel safe enough so that they feel confident enough to return home.

I can totally understand where his worries lie.

From a lifetime of injections, to becoming attached to a machine that suddenly takes the place of the insulin pens we know so well, I put myself in Lance’s shoes, and I can understand that suddenly stopping insulin, and handing complete control over to a machine would be very daunting and frightening indeed.

Just because he comes across like a knowlegable and together 30 year old, doesn’t mean that he doesn’t have seven year old fears.

He is catching up with his good friend whom he travelled to Kids in the House with this week. She has been a pumper for almost four years, so she is an expert-and Lance adores her. I am hoping that talking with her will allay some of his fears. She is going to show him her site and pump, and explain how she doesn’t let it control her every minute.

When Lance was diagnosed, a handful of people had insulin pumps. Now, we are classified as old schoolers, as we are still administering insulin via injection.

He also hit me with another pearler tonight.

“Mum, HOW on earth am I supposed to know how many carbohydrates are in 5 grapes? Or even my dinner? I’m not going to be able to tell my pump what to do properly, because I don’t know about carboydrates properly yet..”

My poor precious boy.

I scooped him up in my arms, and told him that he needn’t be worrying about carbohydrates just yet. I made sure he understood that it would still be my job to make sure the right amounts were entered into his pump. I assured him that I knew that with his sharp mind, that it wouldn’t take long before he remembered and wanted to do it all himself. He half-smiled; he has an extraordinary memory.

It’s so easy to think that you are giving your child the most amazing gift in the world by starting them on insulin pump therapy, however, it did make me stop and think that little minds do tick over, and it’s very important that they have some pre-pump advice, from a fellow pumper, or even a child psychologist. (Most good diabetes clinics have one on staff.)

For now, I’m making sure he gets plenty of TLC and lots of hugs and extra love. (If that is at all possible!)

I realise now I probably did overdo the pre-pump hoopla.

Once he gets used to the idea, it is going to take ME a while to learning how to exist in the world again. We have both become institutionalised by living a life based around numerous daily injections.

Anyway, his steel grey pump is waiting for him with his name on it. I will be in raptures when the day arrives when he realises that he can be “just Lance”…. for the first time that he can remember.

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