Need a New (Out) Look

Yeah, I was kind of a downer in my last post. Sorry about that.

Because of the tone of that entry, and just how I've been feeling in general since returning from vacation, I've decided to try to get a handle on the overall angst that's been threatening to take hold.

Sometimes if you just change some little things, the effects can be big. See Coffee No More.

So, inspired by Tekakwitha, I'm getting back on the bike trails (our recent vacation sort of derailed my daily regimen).

Joseph starts school tomorrow, so the plan is to get up early, see the boy off, wake up the girl, eat, and go. Wish me luck.

In addition, I felt the blog needed a change as well. So, inspired by Amy, and (interestingly) urged by my husband, I've changed my profile photo.

Now, when I asked Ryan if he'd simply not liked my old photo, he said "It's fine. You just look like.... well, you're reeeally concentrating."

Uh huh.

So, I'm still in the same red shirt. I'm just not drawing up a shot-- a shot of NPH, no less (since Joseph's on the pump, the old photo probably feels a bit dated anyhow).

I'm keeping the blog name though. Even though he's off shots, it still feels like much of what we do here-- trying to solve the mysteries of food/exercise/hormones, their effects on Joseph's blood sugars, and of course, how best to bolus -- is indeed, very much, a shot in the dark.

Up Again

It's 3:05 a.m. and I can't sleep. Joseph was high about two hours ago (247), and Ryan gave him a correction. I just checked him again, and he's 198.

Is this the way it's always gonna be? Night after night.

How is he going to deal with this on his own? It just paralyzes me sometimes. This fear of the future. The unending checks. I can do this. Ryan and I both can. But eventually, this will be his responsibility. To keep checking, correcting, checking, correcting...

I don't know. I'm just tired. And feeling kind of burned out.

This whole thing is just nuts. Why did this have to happen? Why him?

Joseph starts school again on Thursday. Already I'm worrying about his ride on the bus-- worrying that he might go low, and no one will notice. How will his new classmates react when they learn he has diabetes?

I'm just sick of it. Sick of this whole damnable disease.

It seems every day there is some horrible bit of news about a diabetes-related complication. Last night, Joseph was reading Diabetes & You, a magazine we picked up this week at a JDRF meeting. On the cover was a photo of a group of kids and the title, "Kids Speak Out." Sounded pretty good. But inside - among other horrors - Joseph found an advertisement for foot gel that pictured an insignificant looking foot wound-- a small cut, really. The ad's copy read "If you have diabetes, even a foot wound this small should be cause for alarm." And in bold blue letters, "If not properly treated, a diabetic foot wound can lead to amputation." Christ.

I don't want him thinking about ANY of that. He's just a kid. He doesn't need to go to bed in fear of losing one of his feet. It's wrong. This is so wrong.

Joseph is smart. He's a kind, sweet, funny, sometimes temperamental kid. Oh, and he's got the tenacity of a pit bull.

He doesn't deserve this.

No one does.

Extremes

Well, we are home. After nearly two weeks away (including 9 days on a mountain lake in northern Idaho) we're all somewhat glad to be back. Joseph had an awesome time-- he was one of six kids at the lake. And the only boy. In addition to Evan, there were two 10- and two 13-year-old girls.

Initially, I was a bit worried when our friends told us they'd be bringing along two of their daughters' friends. I thought that Joseph would be anxious about being so far outnumbered. So, a few weeks before the trip I shared the news with him:

"Joseph, it looks like Anna and Margot will each be bringing a friend this year-- both girls," I said, rather tentatively.

Then I watched for a reaction-- fully expecting disappointment, possibly a blow up. Best we get that out of the way before we get to the lake.

As Joseph looked up from his breakfast cereal, his mouth formed a huge grin. I simply stared a moment, more than a bit flustered. Then, before taking another spoonful of cereal, he said, while slowly nodding his head-- still grinning, mind you:

"Four babes . . . cool."

Needless to say, he had no trouble hanging out with this group of lovely young girls. (Oh, by the way, they liked him too).

So the vacation was fabulous. Lisa and Daryl are two of our oldest and best friends, and we've been doing this trip since before we all had kids. These are the kind of friends with whom you can cook (we all LOVE to cook), hang, play cards til the wee hours, and not feel like you have to fill every silence.

Simply put, our time with "L & D" was, as it always is, rejuvenating for all of us.

Now, you might think that given my description above, our time away was a study in relaxation. And in many ways, you'd be right. But you know, with diabetes, life is never, even in the most relaxing of settings, a long quiet river. There are always the unexpected rapids. And I'm afraid this trip was no exception.

As I mentioned in my previous post, we decided to try the "untethered regimen," which, for the most part, worked well. Joseph would inject himself with Lantus in the morning, then stay disconnected for most of the day (while swimming, canoeing, etc . . . ) -- reconnecting for food boluses and for the overnight. Now, to make sure he wouldn't be getting too much background insulin, we adjusted his basal rate down in proportion with the Lantus he was getting by syringe.

What really surprised me was how high his sugars got at night-- especially given how active he'd been during the day. Ryan and I shifted off checking him (every 1 1/2 to 2 hours), correcting, and even getting him up to use the bathroom (we'd promised him that we'd keep him from wetting the bed). I even had to do some set changes in the middle of the night-- in case a bad set was behind the persistent highs (which never really seemed to be the culprit).

In addition to the nighttime highs, he had some highs during the day as well-- not nearly as difficult to control, but requiring adjustments nonetheless. We kept increasing his basal rate (from as low as .025/hr to as high as .225/hr at night), adding more Lantus, and changing his insulin-to-carb ratios (from 1:30 to 1:15-18), until he was taking in almost 23 units a day (up from between 9 & 11 units before our trip).

What the hell? Was this it? Was he coming out of the honeymoon? Seems like every time Joseph's sugars go consistently sky high, and stay that way for days, I assume that this is it. Just look at the last time this happened. I was absolutely convinced that he was coming out of the honeymoon. But that time his highs were-- according to his endocrinologist -- caused by a growth spurt.

Well, here we go again.

And all this time, I wondered, was it the out-of-control highs of his week at camp that had killed off those remaining beta cells? Could those highs have pushed him out of the honeymoon?

I felt horribly responsible. If I'd just given the folks at camp more instructions, then maybe he'd still have something. He wouldn't be completely diabetic. I know, I know. Just as it's impossible to be "a little bit pregnant" you really can't be "a little bit diabetic." But I guess part of me still doesn't want to let go of what's left of his islets. I want him to have something. Even if that something can make our lives miserable by adding yet another level of unpredictability to this disease.

Anyhow, just as before, it seems I was wrong about this being "it."

On just our second day back, Joseph crashed in a big way. We were out shopping for new school shoes -- just as we'd been one year earlier, the day he was diagnosed. While sitting on the floor in Famous Footwear, slipping on a pair of Vans, Joseph looked up at me and said "I feel kind of low."

Only it sounded more like he said "I feel kind of slow." Oh.

"Just stay right there" I said as I pulled the meter from my bag, ignoring the inquiring looks of the headset-clad employees who came over to make sure we were "finding everything all right."

Joseph was 37. Good God.

So we remained on the floor as he gobbled down four glucose tabs, and waited. Ten minutes later he was 60. Another two tabs. Another ten minutes. 97.
Okay now. Much better.

We quickly made our purchase, and proceeded to the sub shop in the mall for an early lunch.

After eating we went out and bought him a fishing rod and spinning reel-- like mine. We had done a lot of fishing at the lake, and I thought it would be a nice way to acknowledge the anniversary of his diagnosis-- the fact that we've all come so far, learned so much, and that he's still strong and healthy.

I just wished he hadn't had that low.

Little did I know that it would be the first of many lows he would experience over the next few days-- day and night-- until finally, we would pull his insulin back to where it had been originally (a total daily dose of around 11 units).

Last night, looking for some explanation for what was happening, I pulled out our measuring stick-- the one we've used to mark Joseph's height since he was a toddler.

He'd grown nearly an inch since we measured him last-- just over three weeks ago.

Home from Camp... Something Unexpected

Joseph is finally home. By the time we picked him up yesterday morning I was about ready to burst with excitement AND curiosity about his adventures at camp.

When we walked into his cabin to check him out, Joseph looked at me, and with a huge grin said excitedly, "You're here!" And almost in the same breath, "Guess what! We found a wolf spider, and it was THIS big [he made a frighteningly large circle with his thumb and forefinger] and it was really hairy!!"

"Great, honey. That's wonderful."

"Oh and this is Bryson. He uses an insulin pen. And you already met Logan. Can we get my bag? They're gonna give us some free stuff."

He shuffled us into the common room where other parents were in various stages of the check-out process. While we waited our turn to review Joseph's sugars with the cabin's doctor, two counselors came up separately to tell me how happy they were to have had "Joe" in their cabin. Both said they hoped Joseph would come back next year.

And both had the same shaved head-- as did two other counselors who were walking about the cabin... Hmmmm. Interesting.

They must have noticed my noticing of the lack of hair, because it was soon explained that the counselors-versus-campers archery contest had ended in a tie. And because the counselors were unable to win the contest, their heads had to be shaved-- by the kids.

These counselors rock.

Anyhow, soon I found myself sitting across from "Doctor Pete," the same doc I'd met at check-in. Almost immediately after I sat down, he slid a piece of paper in front of me and quietly said, "Joseph ran a bit high this week... all the adrenaline... extra snacks. We stayed pretty conservative with his insulin though... we just left things the way you had them set up on Sunday." As the doctor said these things I scanned Joseph's log. He was in the mid-to-high 200s almost the entire time. Oh God. And in the high 300s twice. Damn!

I agreed that we did rather he ran high than risk a serious low (just one week before camp he'd had a number of lows-- one 47 and several in the 50s). But still, I didn't tell him that those high numbers were really unsettling. I guess I just assumed they would do more to keep his sugars closer to normal. I thought, "Next year. Next year it'll be different. I'll write up a flow chart for them. Should have done it this time. Well, at least Joseph seems to have had a terrific time... and he's okay."

Moving on, the doctor said that he'd asked each boy in the cabin what they liked best about camp, and then jotted down their responses. This was Joseph's comment:

"I really like this place because I fit in. Everyone here is like me."

I just looked at the man a moment, trying not to lose it. Then I asked:

"So will it be at all difficult to get him into this camp next year?"

During the drive home Joseph told us all about his week. He'd gone swimming, fished, shot arrows, played LaCrosse (How does one play LaCrosse? Who plays Lacrosse? Certainly not I. But this week, my son did), and (dare I say it) discovered that a young female camper thought he was "cute." Fantastic.

"And mom, we got to take a boat out on the lake alone. Well, I mean without any adults. We went out with other kids. And, there were nurses in a rescue boat too. But every day we could go on the lake and do anything we wanted.. like take out rowboats, canoes... fish, swim... for an hour... just us kids. It was awesome!"

It was at about this point that Joseph dropped the bomb.

"So I was thinking that I'd like to try using an insulin pen. Most of the other kids in the cabin use them, and I think they're pretty cool. And besides, I'd like to be able to dose myself if the pump fails."

Now, Joseph did give himself shots shortly after diagnosis, but he never drew up his own insulin or used a pen.

"Honey, don't you think you'll miss your pump?" And that's when it came out.

"Mom, at least with shots you know what you're getting. I mean, dosing with a pump is easier, but you never know if you're really getting the insulin."

That's what this was about. A week of high sugars, with corrections so tentative they barely made a dent.

And that's when I realized that Joseph no longer trusted his insulin pump.

"Honey, I know you were high this week, but I asked them to be pretty conservative with your insulin dosing. I was wrong. And next time we'll know to be more aggressive."

"But mom, I really want to try this."

Deep breath. "Well, we're leaving for vacation on Sunday. Since we'll be staying on a lake, it might be a good opportunity for you to try shots again. Maybe you could do both. You know, have an infusion site, but do shots too." Strange. As I said this, I felt the oddest combination of pride (in my son's desire to take on more responsibility for his care) and abject fear (that he might actually prefer shots over the pump).

"No mom. I just want to do shots. Please. I want to do it all myself."

So yesterday afternoon he drew up insulin for his lunch and, without hesitation, jabbed himself in the belly and injected. He used the pen at dinner (I'd purchased one right before we'd gotten the pump), and gave himself a small dose of Lantus at bedtime. He actually said it was fun to give himself shots... to do everything.

His numbers were great the rest of the afternoon and early evening, but spiked later that night. Crying, he said "I don't want to be high. I've been high all week." And then, through tears, he told me he'd wet the bed every night at camp.

Every night.

"Did you tell anyone?" I asked, with my arms around him.

Wiping his face, he said "Nah. Why would I? I was just so tired of being high. Every morning, everyone would shout out their numbers-- '103!' '110!' '112! -- and I'd have to shout out '236!' I was just so sick of being high!" Then he broke down. We both did.

We did two corrections (.5 and .75 of a unit) with the syringe in two hours. I felt uneasy about this, but he wasn't coming down. Between midnight and 3:30 am he went from 196 to 229 to 86 to 53. Four glucose tabs brought him up to 97. By 7:30 am he was 124, and by then I was about ready to throw every syringe in the house out the window. I just kept thinking that a new set (his cannula was kinked when we removed it yesterday), some fresh insulin in his pump reservoir, and an increased basal rate would have done wonders overnight.

I had promised him that we wouldn't let him stay high overnight, that he wouldn't wet the bed. And he didn't. But it took all night to get him down-- only to have him go too far down.

I hate shots.

And by the time Joseph sat down to breakfast, he did too.

"Mom, I think that going back on shots was a bad idea. I kind of miss my pump."

"I'm glad you want to go back to the pump, but it wasn't a bad idea to want to try something different. "

So after breakfast-- for the first time -- Joseph filled his reservoir, rewound his pump, loaded the cartridge, primed the tubing, and helped with his insertion.

"Mom, I really do love having the pump."

I'm finally finishing this post, at... 5:55 pm. Joseph's had good sugars all afternoon as we pack for our upcoming trip. We'll try the Lantus/pump combination at the lake, to give him a bit more freedom and to try to prevent any crazy highs. And, to let him do something different.

In the meantime, I'm still thinking about his experience at diabetes camp. He's been talking a lot about the fun he had and the friends he made. Joseph very much wants to go back next year, and I can understand why. For the most part, the experience was really, really good.

But it was a little sad, too.

Diabetes Camp

I'm feeling a bit lost this morning. Joseph's been at camp since Sunday afternoon, and I won't see him until Friday.

He's more than a hundred miles away right now.

You know, this would have been kind of tough for me even if he didn't have diabetes. After all, it's the first time he's been away for more than one night. His only other camp experience was at the school forest. And even then, his dad was one of the chaperones.

Some of you might wonder how he did when we left him. Was there anxiety about the fact that he wouldn't know a soul at camp? Had there been a long, tearful goodbye?

Well, not exactly.

During the drive to the camp site, Joseph, who had been quietly listening to Barenaked Ladies on his cd player for some time, suddenly interrupted Ryan and me as we talked about how wonderful this experience was going to be for him.

"Mom, I really wish we hadn't gone to the newly-diagnosed camp last October."

"Why is that, honey?" I asked, thinking "here it comes, finally, he's going to say something like 'then we wouldn't have found out about the summer camp'."

"Because then this would all be new."

Oh.

"Well darlin' there'll be plenty of new things. Many more kids. Many, many more activities. You'll get to actually SWIM in the lake instead of just looking at it. There's a mud pit, archery, kayaking, boating, climbing wall, campfires... tons of things."

"Yeah, it's gonna be great!" Joseph replied with gusto.

Who is this boy? This child who nursed for two years. The one who slept in our room for so long (and still does every so often when he's feeling scared).

Well, we'll see what happens when we get to camp.

So we got to camp, and he was high. Very high. Like 349. Yikes! And he hadn't even had lunch yet. Since we got there 30 minutes before check-in was to begin (a process that would take two hours), I figured we had time to bring him down. Half an hour after correcting, almost no change. The set had to come out. We'd just put it in before leaving for camp. Tubing looked good, but I couldn't take any chances. Even though I knew that the persistent high was more likely due to the sweet cereal he'd had at gramma's (where we'd spent the night, since she lives about 45 minutes from the camp site), and an adrenaline surge from all the excitement.

Joseph was not happy about being high. In fact, he was very angry about it. In a tearful voice he said "Mom, why did this have to happen? I don't want to be so high. Can I just rip out the set?" He seemed very self-conscious, scanning the crowd around us as he said these things.

"Don't worry. This will just take a couple of minutes." I don't think he was truly cognizant of the fact that the majority of the people waiting with us in that ungodly heat, huddled under the shade of a tree, would understand exactly what we were doing and why. There were a number of nods and knowing smiles as I ushered Joseph into a nearby camp building to wash our hands and change out the set.

Within the hour his sugar came down, and we embarked on our visit to each check-in station. Joseph was assigned to the "Explorers" cabin. He compared the experience to that of the students at Hogwarts being assigned to their "House" by the sorting hat in Harry Potter. "Cool," I thought.

Next up was a visit to the Health building to review Joseph's general health, then on to his cabin to unpack and to discuss the specifics of Joseph's diabetes care with the doctor assigned to "Explorers."

As we walked to his cabin, Ryan whispered "this is the meeting that is really going to put you at ease about all of this."

What? What did he mean by that? Then I realized that I'd been clenching my teeth at every station. I knew this would be great for him, but still, how could I leave my son in the care of strangers? Even the docs at his clinic deferred to my judgement about Joseph's bolus and basal rates. Often I made changes on the fly. By feel. How could they really take good care of him?

Ryan was right. Joseph and I sat in front of a doc and his assistant. Reviewed his basal rates and insulin-to-carb ratios (both of which I pulled back considerably given the high activity level at camp), discussed corrections, looked over his pump. That's when they told us that, for the camp duration, Animas, the maker of Joseph's pump, actually had a CDE and two reps on site. They also informed me that, in addition to the many checks throughout the day, blood sugars are checked at 12:30 am and 2:30 am. When the kids are in the water, there are a number of rescue boats with nurses on board there as well. Children need only raise their hand if feeling low, and they will be checked immediately.

This. Place. Is. AWESOME.

With check-in complete, Joseph immediately introduced himself to his bunk mate (a boy who, his parents confided, did not want to even get in their van that morning because he wouldn't know anyone at camp).

"Hey, you wanna play catch?" Joseph asked. As they tossed the ball to each other in the common room, a third boy shyly walked over. Joseph stepped back and said "we have room for three." Then he asked both boys, "Do you play baseball? Any little league?" He told one of them "hey, you throw like a pitcher, I bet that was your position."

I asked Ryan, "Should we go now?"

"I guess so."

Just as we were leaving, the three boys had abandoned their indoor game of catch and were now pouring over a large container of toys. I called out "Hey Joseph, we're going now."

He looked up from the floor and said "Okay. Bye mom." Then continued yuckin' it up with his new friends. I looked at Ryan, and just stood there a moment, at a loss. Then, as I turned to leave, I suddenly felt Joseph's arms wrapped around my waist. He smiled up at me and quickly said "I love you mom. And I'm fine. This hug's for you." Then he ran back to his buddies.

We haven't spoken since. I miss him very much. But I am trying to enjoy this break from diabetes management. It's so strange. I never realized just how much I thought about his diabetes care until now. Yesterday I went on a 20-mile bike ride with Evan. We rode along a creek, then a large lake. Stopped to watch a duck and her charges cross a river; sat and talked about fish and birds. Then we had lunch, and never pulled out the Calorie King, never thought about the timing of the meal, the postprandial sugar...

It was wonderful.

And because it was so nice, it makes me sad to think that, until a cure is found, Joseph will never have a break like this. Never be able to just eat without thinking about the carbs. Not be wary of the possible high or low.

But you know, he does have this camp. It's probably the closest thing to a real break he'll have for a while. And it is pretty damn fantastic.

Needless to say, I'm already thinking about camp for next year...