Monday, August 20, 2007

Decisions, Decisions.

After a long day of swimming yesterday, both Tom and TJ come home looking a little green. Pool water ingestion. Tom manages to rally and bring Gwen to Jake and Samantha's birthday party, but Thomas tosses his cookies just before leaving (better than in the car, I suppose!).

Suddenly, we are in the middle of the day I have been hoping to avoid. The ominous "SICK DAY."

There is more to know about diabetes than any other subject I can imagine. Every time I open the binder I started at Children's or the care book that has become my bible, I stumble upon a "rule" I had totally forgotten even existed. BUT, not for a minute have I forgotten all the warnings we were given about "sick day management." Of course, the rules are extensive, so instead of sitting in the bathroom with my child who might toss more than cookies, I find myself simultaneously rubbing his back on the couch (while he holds his head over a pan) and frantically trying to discern the most complex insulin dosing chart I have ever seen in my life.

The first part is easy, I already know it without a cheat sheet. NO DINNER, NO FAST ACTING INSULIN. Decision 1 - Check.

But that only gets us until 7:30. Bedtime. Time for his Long Acting Insulin. Now my mind is racing. Does he skip it? Can he have it without food? Should I be putting a call in to the endo on call? Is that my child sleeping with his head in a pan? - Better figure it out fast.

I call Tom to come home and continue reading frantically. (Surely "frantically" is not the method to use for optimal comprehension, but its all I've got, so I stick with it.) OK. He can't skip the insulin, for threat of DKA. He can't have the insulin without food. I have already tested him three times in the past hour, but I test him again to determine his dose. 121. He needs 30% less insulin than his regular dose. Math. Possibly my least favorite part of diabetes care. If only someone would have told me, I would have at least tried to do my algebra homework.

I can do this...I am smart...I can figure simple math! Let's see. 2.5 times .6 is... Where is that calculator again? Well...2/3rds of 3 is 2, so 2/3rds of 2.5 must be a little less than 2. Isn't that scientific. Luckily Tom comes home in time to draw the dose. Decision 2 - Check.

So now we have a TOTALLY comatose child, who needs insulin (sleeps right through it) and Gatorade (won't wake up for it). After 20 minutes of prodding, the Gatorade is gone, his BG is 96 (too low for bed, but the insulin was reduced so I'll let him sleep for a while), and he is in bed. PHEW. Oh yeah, and Gwen - the forgotten one. Sometimes I see the point of all her "you love Thomas more than me sulking." I suppose I'll tuck her in, too.

9:00. Back to work on my Literature Review. I had promised myself to only spend until 3PM on it, but somehow it has taken over the whole day, and is clearly going to consume the night, too.

12:30. After FINALLY finishing my "Literature Review" and submitting it by the midnight deadline, I head to bed, testing kit in hand. 160. Not that high for TJ. More Gatorade. This time it goes down a little easier. Decision 3 - Check.

I set my alarm for 2:30.

3:30. One hour of pressing snooze later, I decide to make Tom check his BG. I am expecting high. Even with full loads of insulin and carefully calculated meals we often find ourselves giving correction doses in the middle of the night. But not tonight. 66. Tom comes back with more Gatorade. I start to protest (not sure it is 'fast acting' enough) but decide that I should be less of a control freak. Decision 4 - Check.

3:45. Tom is back to sleep - snoring. I read a short story and then I go back to test Thomas. Tom thinks I am being overly worried. 60. 'Well There - you were totally wrong with the Gatorade', I think. Of course my worry is now overtaking my ability to gloat. Usually Gatorade sends him sky high. Why is he still dropping???

4:00. Downstairs for raisins. Plus he needs a "carb/protien snack" if his next meal is an hour or more away (another "rule" I forgot - I had to get out the binder.) He eats the raisins. Half asleep he is totally cuddly and adorable. Decision 5 - Check.

4:20. I have given up on sleep. I read another story, go back to test again. 104. PHEW. I wake him up again to have a drinkable yogurt. He actually thanks me. "Thank you mama. I love you mama. Can I go back to bed now?" I tuck him in for the 5th time, rub his back. "See you in the morning" he mutters. Even in the middle of the night, wide awake, drips of yogurt on my shirt, I am the luckiest mother in the world.

Decision 6 - Check.

Sweet Caroline...TJ and Tek

A truly unexpected positive by-product of TJ's diagnosis is that friends, family, and even strangers have come from far and wide to offer support.

After his stay in Children's, TJ was selected to participate in the Tek's 33s program, sponsored by none other than Red Sox catcher and team captain Jason Varitek. Our family (along with the amazing "aunt" Amy) attend the August 14th Sox game against the Tampa Bay Devil Rays.

What an amazing day! Before the game even started we were treated to a private batting practice, and Jason Varitek graciously met with the 4 patients from Children's, signing shirts, hats, gloves, and anything else they tossed his way. We had dinner on Yawkey Way, tried to get on TV behind Rem Dawg, and cheered as loud as we could all night. Gwen even let Thomas touch her - if ever so briefly - while they posed for this picture.

And... the game was amazing, culminating in the Sox winning when Varitek scored the game winning run. Who could ask for more, really!

Happy Birthday to You...

After months of anticipation, Thomas' 6th birthday finally arrived! A clear disadvantage to the "summer birthday" is that you go to a bunch of classmates parties during the school year, but have to wait what seems to be an endless amount of time to plan your own.

For the first time, after many years of getting off the hook with a simple cookout, we planned a true party for TJ - complete with classmates and a HUGE water slide.

The day was a blast, and luckily, TJ's numbers stayed right on track despite noshing on cake, chips, and pizza!

Sunday, August 12, 2007

Is it time for school yet???

So...summer sucks. Alright, thats a little harsh. Our family has shared some wonderful days at the beach, on the boat, on vacation, and at Cape League games, but managing TJ's diabetes is sending me over the edge.

Let me backtrack a little. Although April was a whirlwind, May and June felt relatively "back to normal." Thomas' numbers were pretty good (with a lot of help from the "honeymoon") and we were feeling good about his school routine. He even learned to check his own BG, something I figured wouldn't happen for a year or so.

Like all teachers, I was looking forward to summer, but more so this year as I was anticipating all the success I would be having manging TJ's diabetes. I was sure that since I would be able to be with him most of the time, and "really have control of his numbers" things would go smoothly. (Obviously God has punished me for not believing in Him (or Her) by giving me - most controlling of humans - a child with a totally UNCONTROLLABLE situation...but I digress).

Of course, the minute summer started, it all hit the fan. Basically, we have been putting up with totally unacceptable BG readings since the start of July. Mostly high, with a few crazy lows (24 the other day out on the boat) just to keep us on our toes. Oh yeah, and the honeymoon seems to have ended the minute the endo said it could last up to two years.

Boy, I have never been so looking forward to school starting, since I'm sure with a little routine we can "control his numbers." Yeah, right...

Shopaholic meets...diabetes

I am fully in a fog for the entire moth of April, but somehow feel I can gain a little control by shopping.

It started in the hospital, when I had no clothes to wear because I was already in Boston when we found out Thomas would need to be admitted. I could barely stop crying, but in between tears I kept thinking "God, I would feel a lot better if I could just pick up some sweatpants at Target."

When we got home I branched out to low-carb foods, storage boxes for all of our diabetes supplies, an ID bracelet, books, cookbooks, etc, etc, etc...usually I tried to take Tom with me to the store, because otherwise I ended up in a fog wandering around, not knowing what I was looking for, regardless of how carefully I had planned what I was going out for.

Who knows...maybe someday I can cure diabetes by shopping...

Diabetes here we come...pitstop at denial

Tuesday morning...I have a meeting in Boston, but Tom makes the appointment for TJ to see the pediatrician. Like every good working mother, I leave my phone on during my meeting, even though I am secretly still thinking there is NO WAY TJ has diabetes, and we will be laughing about our over-parenting soon.

Instead my phone rings half way through the meeting. Tom has collected information from the pediatrician in the most manly way. "The Dr. thinks TJ has diabetes, we are going to Children's, we will have to stay for a while." He literally has NO more information. UGH.

Even as we wait for hours in the emergency room, we have no answers. Our pediatrician didn't make a definitive diagnosis (at least, not that Tom can remember), and everyone at Children's is saying we will get more information "when we get upstairs." Even as they started talking about his 'first dose of insulin' I was not realizing that we were talking injections, every day, forever.

water, water everywhere

Thomas is wetting his bed. A lot. Not the regular soak through the Pull-Up wet, but a deluge-like wet. We put him down at 8 and his bed is soaked by 10. Change his sheets, he's in our room soaked again by midnight. I have been peed on in my own bed. It has made for some good story-telling at work, but truly I am losing it.

Needless to say, I thought I'd be over these kinds of parenting humps by the time my youngest was 5. Of course, in a never-ending string of "mother of the year" type parenting, what I am most concerned with lately is how much sleep I am losing. And how much laundry I am doing.

Who knows where the thought came from, but one day, after about 3 weeks of endless wetting, I thought "diabetes." My uncle is type-1, and my cousin was diagnosed just last year at 17, but somehow it never dawned on me that my children were at risk. And still, one day the thought popped into my head. "Frequent urination...diabetes." For years I have been secretly walking around feeling lucky to have dodged all sorts of bullets: my kids are healthy, seem well-adjusted, bright...we made it...or maybe not.

Tom and I start tossing around the idea that TJ is diabetic, but it's more like a joke, as in "that friggin' kid has diabetes" and of course, the implications are not real. This goes on for another week. Tom goes fishing with our good friend Mike and comes home declaring that there is NO WAY Thomas has diabetes. Apparently in a few short hours of fishing, Mike peed far more than TJ ever does in a day.

But, on a whim we use Grandma's boyfriend's meter (and Grandma's expert nursing skills) to test Thomas. 384. Well then. Diabetes it is. Except it's Sunday. And tomorrow is Marathon Monday. So I put it out of my mind until Tuesday, when the doctor will be in the office. I am sure they will have some other explanation. Right - Tuesday we will call to "be sure" that TJ is NOT diabetic.