Monday, April 27, 2009

Why doesn't anybody at the hospital know how to pronounce the word "Christian"?

In spite of my Wellbutrin and going to bed at a reasonable time last night, I feel tired today. Like, I should get up and go get the list of Christian's blood sugars from the weekend and update the computer form, but I don't want to go to the effort. Days like this are almost never productive.

With one notable exception, it has been an exhausting four days. First Tommy got a fever, and then Christian did. And fevers will never be the same in this house again. Fevers cause blood sugars to spike. And when that happens, you have to introduce urine testing for ketones and additional insulin into the mix. Giving Christian additional insulin makes me very nervous. I hate it.

He stayed home from school Thursday with Tommy (both had fevers). Then, Tommy's went away, and Christian's got higher. Friday morning, it was 102.6 and he complained of chest pain. When his blood sugar gets high, he gets paler, until he gets the flush of fever which is too bright, two red stains on his cheek.

I called the doctor and his office was closed. So, I called our team in Columbia and they recommended that I take him to the ER just to be seen. So, I gave him his lunch and packed his sugar meter (what is that thing even called?), snacks, glucose tablets, insulin of both kinds (slow acting and fast) and needles, my laptop, video games, cell phone and charter, novels, and off we went. I told him, "If we pack as though we will spend the night, maybe we'll get out of there before dinner."

Well. If you take a child into the ER and say, "He has juvenile diabetes," you will not have to wait. I have never gotten such fast (urgent) service in my life. In fact, it wasn't even until they had strapped heart and blood pressure monitors on him that they asked why we were there. They did a blood panel and an X-ray after listening to him. They determined that what he had was viral and sent us home. We were home in time for his afternoon snack.

Friday night was a mish-mash of dinner with friends and watching a little bit of the Battlestar Galactica preview show Caprica. However, with Christian's fever, I had been up more frequently checking his blood sugars and I knew I would be again, so we called it an early night.

His blood sugars plummeted during the night because we had to give him extra insulin Friday night. So, we'd wake him and give him milk and then back to sleep for a couple of hours. Rinse, repeat.

On Saturday, he still had a temperature, but was feeling better. Dereck had plans to take the kids to a snake exhibit on campus, and my friend Jamie was in town this weekend and wanted to go out for a cocktail. Dereck left me lying on the bed with a sinus headache and wondering how I could manage to duck out of my drink with Jamie. So, I called my friend Talia and invited her to join us. She and Jamie came here first. I tried to convince them that we should just stay home and drink cider, but they wanted to go out. So, Jamie drove us up to Il Spazio... where Dereck had a surprise party waiting for me! For my 40th birthday, which is tomorrow.

I think I have had maybe one other surprise party, but the other one was notably smaller: When I was 18, my friend Diana and some other friends surprised me for my birthday and took me out.

This one took the cake: The kids had known about the party for two weeks, but nobody blabbed. Unbelievable. Sam said, "Why weren't you suspicious?" and I looked at him and said, "Because today isn't my birthday!"

My headache vanished and I was able to enjoy good friends, appetizers, and decadent cake. A few friends followed us home for dinner where we got some chicken and side dishes for supper.

And then. I was calculating Christian's insulin at 6pm because he needed to go up a step for his evening dose. But I got the morning dose in my head. I gave him 22 units of insulin, instead of 11. I said, "Oh, I have to give you one more, because I forgot to go up!" He and Dereck said, "Wait. The evening dose should have been 11."

I don't know when I have been more panicky. I gave my kid twice his dose of insulin! Fuck! So, I got hold of the Team Doctor on call and he said that it's a common error. He told me I wasn't a bad mother. He said, "Just check him every hour or two and feed him sugary drinks." So, I ran out for pop and Skittles and we checked him every hour or two. And gave him milk and chocolate milk again, depending on how low his sugar was.

Yesterday, his blood sugars were still wonky from the insulin, but his fever was much lower. He did have a temperature though, so I have kept him home today. He is much better today, but I just wanted him to have one stable day. I spoke with the school nurse and she said, "Don't rush him back. Don't feel like you have to send him back tomorrow either. Kids have been out with this for a week, and they don't have diabetes."

It's a little like diabetes is a trump card for everything. It could go to our heads if we let it.

The other night, Christian wanted to play on the computer before bed. I told him that because he was sick, he could either go lie down in bed and read or go lie down on the couch and watch TV with Tommy. He said, "If you force me to make this decision, I'll just get sicker."

I said, "You can lie down in bed or lie down on the couch. I am your mother, and you are sick. And you are not going to manipulate me this way."

He apologized immediately and went to bed. Wow, I can see how some kids might use illness as a way to get what they want! If you don't do what I want, I'll stress myself out so my blood sugars spike!

Oh, hell no.

My dad is an asthma researcher. Self-management. He said that when he began, a lot of the kids at the center where he worked would induce asthma attacks because the hospital was fun: TV, ice cream, no school work. So, he took away the TV and the ice cream and brought back the school work. Suddenly, the rate of hospitalizations went down. They told me down at the hospital in Columbia that some kids will impose high blood sugars with ketones so they can be at the hospital-- because the hospital is nicer than where they live.

That breaks my heart.

Jamie and his wife Karen gave me a book of poetry by C.D. Wright called Rising, Falling, and Hovering. I started reading it yesterday afternoon and it is beautiful, but also writes unflinchingly of poverty and war in Mexico, Central America, Iraq. Situations that I, sitting in my living room, cannot imagine. Cannot fathom. Noam Chomsky says our society breeds us for apathy. Isn't that true? Isn't that horrifying?

I don't know what to do about it. I should pack up and move to a third world country and make things better. Maybe when I am not so busy poking a small boy with sharp instruments every two hours, I will be able to go out and make the world a better place. Until then, I am afraid I am very much tied to my homestead.

Christian's diabetes reminds me of when the boys were newborns, only instead of them waking me with their cries, my alarm wakes me and I pull on my robe and quietly go to his bedside to check his blood sugar. It's both nice and a little overwhelming to be so needed. The blood sugar is getting to be routine; the shots aren't so much yet. I asked at the emergency room if there was a trick to not hurting him and at the same time checking to make sure I haven't hit a vein (by pulling back on the plunger). The nurse told me no. But this morning when I had my own blood sugars tested for insulin resistance, the nurse told me simply to keep the needle still.

Now, that wasn't so hard, was it?

I am lucky: Christian is okay. Yesterday was the 6 year anniversary of Sam being hit by a car. He is okay. Tommy was playing with our friend Heather's mandolin all Saturday afternoon. He was writing songs, and Jamie was writing them down, recording them, and paying Tommy $5 to perform. Yesterday, Tommy found a mandolin on Ebay for $27, and we got it for him.

School will be out soon. Summer will be upon us. I don't have any grants due this week. Yet, I do have work to do. Even though I have often felt like I have been pummeled by the universe this year, I still know I'm lucky.

I do.


  1. Awesome.

    You're a great mom. :)

    My best bud in grad school was diagnosed with JD while he was there. He was 20. And then my grad advisor a few months later, with type II. I knew whenever there was an illness going around, those guys had to be super vigilant about their sugars. It's amazing that, those of us who have fully functioning pancreases (is that the proper plural use?) and systems never have to worry about such things. Amazing that the body, for the most part, takes care of that all for us.

    I hope you guys stay healthy and get back to more of a routine this week.

    Happy Monday!


  2. Ah, shit. Sending love your way and telling the Universe to buck the hell up and part the waters for you and yours. Love you!

  3. I'd have struggled not to faint on the spot when I realized I'd doubled the dose... A cold jolt of pure panic. I'll just bet it happens often enough. Too easy to do. Yeep.

    I'm glad the solution was straightforward, and I'm sure you'll find a lot of this becoming more automatic and less fraught as you gain experience. Hugs to you!