Wednesday, February 10, 2010

Plush Pumpers and Other Assorted Type 1 Critters

We have made some exciting progress with regards to site changes; Jenna has been agreeable to sites on her upper arms!

We were able to persuade her by explaining that to keep using her pump we need to use other sites. Her bottom is getting tired. If we can't switch sites we'll have to go back to MDI's. That did it. Jenna wants no part of the whole three-needles-a-day club anymore. I told her that she would likely be surprised at how easy she would find insertions on her arm. When it was done Jenna said, "You were right Mommy! It wasn't bad!" She still has no intention of allowing us to do an infusion site on her abdomen. But after today's little art therapy session I have better insight as to why she is so opposed to this. Let me explain...

Earlier this week I was forwarded a link to a site called Haiti Houses. I love this idea of creating little houses out of paper and selling them to raise money for the people of Haiti and thought it would be a good craft project that would also teach my girls a sense of global community, good will and the spirit of giving. Since the devastating earthquake in Haiti I have had numerous conversations with my girls about what happened there. They are aware that people are suffering and they have voiced a desire to help. So I gathered the necessary materials last night after my girls went to bed and began prepping for a crafting session later this week. As I created a little house to serve as an example and inspire my girls, my mind began to ponder other paper crafting possibilities.

And then it came to me.

Jenna has several dolls and stuffed animals that have type 1 diabetes, so she has told me. I thought, why not make these little critters some insulin pumps out of paper! And Jenna can perform site changes on them using an old insertion device from one of her own site changes (sans the needle, of course).

So this morning my girls and I got busy with some colourful card stock, glue, googly eyes (they make the best pump buttons), and some butcher's cord for tubing. It was great fun! We made paper pumps in an array of stunning colours and then matched each pump with the perfect doll or stuffy. Each toy got an infusion site on a different body part:

Lumpy opted for a thigh placement,

Cookie-Pookie got one on her upper arm,

Boo went for the bottom,

And one brave but nameless lion attempted the very first site ever performed on a tail!

And as Jenna was deciding on a site placement for Elmo, I asked her if Elmo was willing to try a tummy site. Jenna told me of course he was.

"Elmo is very brave," she explained. "But I won't be having a tummy site." I asked her why. She told me that the last time she had a site in her tummy she accidentally scraped it against a bar stool in our kitchen as she was trying to get down. It hurt a lot.

So at least now I know why she is so disagreeable to this. I don't know if I would have found this out had it not been for the little art therapy session we were immersed in prompting the dialogue about site changes under non-threatening circumstances.

By the end of our crafting session we had a small army of plush pumpers with pretty paper pumps stuck to them! It was an impressive site, to say the least.

Most days I feel like I'm clumsily fumbling through this whole parenthood thing with the best of intentions but with all too human an approach. But today, I felt rather accomplished.

It felt pretty darn good.

Sunday, February 7, 2010

Road Trip

We took a road trip this weekend; many hours of road travel and a couple hours logged on a ferry were involved. A very well stocked first aid kit, about two weeks of diabetes supplies, several changes of clothing and pajamas for myself and the girls, two cameras, two tripods, laptop, and a portable DVD player with about 8 of the kid's favourite shows were among the items crammed into our travel bags, all for a mere overnight stay away from home. And I haven't even mentioned the smaller version of my medicine cabinet I routinely pack for ailments ranging from headache, fever, indigestion and, of course, lactose intolerance.

We were ready for almost anything.

I couldn't help wondering, as I was assembling items and personal belongings prior to leaving, if I would be feeling foolish in a day and a half when I would find myself having to unload a vehicle full of stuff, most of which was completely unnecessary. But as it turned out, this was one trip I would be thankful for my penchant for preparedness.

Jenna experienced her first G.I. bug ever this 4 am on Sunday a hotel room...500 kilometers from home. I have been dreading this inevitable encounter with the barf-bug since her diagnosis. How would it affect her blood sugars? Would she go too low? And if so, how would I treat a low if she isn't able to keep food down? But the question that did NOT occur to me was, what if it happened while we were away from home?

We had been getting up every two hours checking Jenna's blood sugar and bolusing to battle the delayed high from a pasta meal she'd had for supper at a restaurant Saturday evening. I tried in vain to talk her into stuffed mushrooms and soup. But she was set on pasta.

At 4 am Jenna sat up in bed. Mommy my legs are achy and I...*cough*...*barf*...

James and I sprang into action. I stumbled around in the dark trying to find the switch on the lamp between the two queen-sized beds. My mind started racing, trying to trouble shoot the problem. "Get her to the bathroom! Where's the checker?!" I quickly put together a worst case scenario in my head. Achy legs...vomitting...she's probably sky high complete with ketones because of that damned pasta. Or maybe her site went for a crap sometime in the night and she's been going without her basal--maybe even missed a correction. I checked her and braced myself for what I was sure would be an astoundingly high reading. But it was only 14. Definitely out of range but not nearly as high as I was expecting. A correction was given. I decided to check for ketones anyway just to be safe. No ketones. No fever. And Jenna reported feeling better after she vomited. So we cautiously settled her back to bed (after some necessary house keeping duties were performed) and hoped for the best.

But she vomited twice more after that requiring a total of three pajama changes.

We decide to ditch our plans for that day, admit defeat and book it home. At 7 am we packed up the vehicle and our two sleepy babes and that's precisely what we did. Thankfully, Jenna didn't have any further bouts of vomiting and she never developed a fever. Her blood sugars ran a little high for the first couple of hours of travel but eventually settled softly into the normal range. It was a very brief session of gastric upset that initially had me worried but was quick to run its course.

By the time we got home seven hours later Jenna was her usual self, albeit tired and in need of a bath, comfy jammies and a home-cooked meal. When we parked the vehicle in our driveway I reached over to unbuckle her belt. She looked at me and with a beautiful, contented smile on her face and said, "Well, that was an adventure."

That's my girl.

Tuesday, February 2, 2010

The Sadly Misinformed and The Dangerously Uneducated

I get somewhat annoyed with the ignorance that is everywhere with regards to type 1 diabetes. If you are reading this because you or someone near and dear to you has type 1 diabetes then you know what I’m talking about.

I’ve been relatively lucky so far; since my daughter’s diagnosis nearly two years ago I've only had a handful of uneducated people reveal their ignorance to me with ridiculous statements that they attempt to pass off as firsthand knowledge because an elderly relative of theirs has (or had) diabetes. Let’s face it; chances are their experience is with type 2 diabetes. But they claim to know “all about diabetes” because of this feeble link they have to a disease that is vastly different from type 1 diabetes. If they really do know so much about the disease my daughter has and will have for the rest of her life, barring a cure, why on earth do they say such oblivious remarks as, “So is your little girl diet-controlled?” And why, when I answer their questions about how often I check Jenna’s blood sugar with “...usually six to ten times a day,” does their jaw drop to the floor?

So I guess I could cut these people a little slack. Obviously there is a huge information vacuum out there with regards to type 1 diabetes. It truly is a disease that you can’t possibly know everything about unless you have had some extensive firsthand experience with it. So what this really says is that we have a lot of work to do educating the public. But that excuse doesn’t hold water when it comes to medical professionals.

A pediatrician once doubted that a quarter unit of insulin would have any real effect on my then two year old daughter’s blood sugar. This doc actually scoffed when she looked at my dosing record! I believe her statement went something like this: Do you really think a quarter of a unit does anything? Hind sight has me wondering why I didn't counter her query with: Do you really think they would have bothered manufacturing insulin pumps touting the ability to deliver a basal rate as low as 0.025 units per hour if it were that insignificant?

A GP once told me with obnoxiously arrogant certainty that illness has no effect on my daughter’s blood sugar. I was in such disbelief that I wasn’t sure I heard him correctly. How can people trained in the medical arts be so misinformed? How is that possible? Am I alone in feeling somewhat unnerved by this?

This is unacceptable. I think we all have an obligation to our loved ones with type 1 diabetes to spread some much, much needed knowledge. Evidently, we have our work cut out for us!

Monday, February 1, 2010

Site Changes Suck!

As parents we go to great lengths to ensure our children are safe-- that they avoid injury or anything that could cause them pain or discomfort. It’s instinctive. So when a parent of a child with diabetes has to inflict physical discomfort on their child to keep them safe it is an experience of true paradox, especially when the child is very young and doesn't have the rational understanding of why the uncomfortable procedure is required.

Every three days my husband and I are required to change Jenna’s infusion site. This is a process that, under calm and cooperative circumstances should only take 5 or 6 minutes to perform. However, lately this is a much larger undertaking requiring a great deal more time to plan and execute.

Jenna has become very fearful of the site change over the past several months. I used to be able to carry out a site change by myself with no assistance from my husband. Jenna would willingly lie down on her tummy in the living room with her cute little rump exposed, ready for the new infusion set to be inserted (and with the promise of three or four jelly beans upon its completion.) All that has changed.

Now Jenna tries desperately to muster the courage to be a willing participant in this necessary evil. I watch her face as she tries to show a stiff upper lip. While her daddy and I assemble the paraphernalia required to perform the task I observe her talking to herself under her breath dealing with her own conflicted emotions—I don’t want have to. I see her efforts to buck up when she gets to the point of lying down on the floor, only to lose her nerve and flee at the last moment as I’m wiping the area with an alcohol swab. And it kills me. To watch my three year old little girl having to dig so very deep for courage destroys and exhausts me.

It’s to the point where my husband and I have to accomplish site changes when we are both home so that James can hold (restrain) Jenna while I insert the infusion set. I don’t know how either of us will manage if we have to do an emergency site change when one of us isn’t home. And we are unable to convince Jenna to have a site in another area of her body. Her abdomen is an area we would very much like to take advantage of. But Jenna is strongly opposed, even though she has had a couple of sites changes there in the past.

Jenna had a site go very bad a couple of weeks ago and I knew this was a sign that her posterior is getting weary. We so badly need to explore other areas. Out of desperation, during our last site change James and I decided we would restrain her and attempt an abdominal insertion. But her screaming, crying, begging and pleading forced me to suddenly abort the mission. I just couldn't do it. It felt so wrong. It was, indeed, one of the most horrible experiences my heart has had to endure--to cause my child such trauma. No parent should have to experience the gut-wrenching hell of having to restrain their child while they kick, scream, cry, beg and plead for you not to do something that causes them emotional and physical distress but is necessary for their very survival.

I’m not quite sure what to do at this point. I don’t like making candy a reward but I feel some sort of reward needs to be offered. So if anyone has any ideas, tricks or methods that seem to work I’m open to suggestions...anything. Please.