Welcome to our Wacky World of Weirdness

Hard to believe that several months have passed since my last post, but life does have a way of catching up with you. And truth be told, I’ve been so apathetic of late, that I’ve no energy to do anything, it seems. Maybe I’m a bit depressed, too. I’m missing my home like crazy – 3 years since I’ve last seen my mom. Maybe I just need a hug.

I know, enough with the pity party, get on with it!

Anyway, yeah, three months. It’s been a crazy three months. Alex celebrated her 9th birthday during this time (she’s a groundhog baby, by the way), and she has grown so much taller. No weight gain, which is exceedingly worrying to her daddy, but she has grown a few inches. So, if doc ain’t worried, I ain’t worried.

Her little body is changing changing changing. Her insulin requirements have gone crazy – up then down then down some more then up again. Part of that craziness has been because of scarily unexplained fevers that she had for well over a week last month. Every morning at 2:00 am (an insane time, if ever there was one) I’m up checking her sugar, and as I grabbed her wrist I could just feel the heat pouring out of her. Like a blast furnace, it was. I grabbed the thermometer to check -- nearly 104F. Not good at all. It took a combined dose of Tylenol and Advil to bring it down, but then I found that as soon as they started to wear off, her fever would creep right back up. Funny, aside from the fever, she says she didn’t feel that bad. Granted, she had a bit of a sore throat for a few days, but no tummy bug, no earache.

We’d just seen her doctor for her quarterly D-check-up about a week before, and I had the doc give her a good look over, and specifically check her ears. Not so much for a sign of infection, but for something else. About a month before, Alex was playing in the room with some little beads. And I heard her counting the beads – 20, 21, 22, 23. A little while later, she asked me what would happen if she put something in her ear. (Are you rolling your eyes right about now?) Naturally, I asked, “Why, did you put something in your ear?” “No,” she says, “just asking.” Okay. I go back in the bedroom and see the beads – 20, 21, 22… where’s 23? No 23. Okay. Alex comes back in and we do the song-and-dance routine again and she still insists she put nothing in there, but I’m welcome to look, “if you want to.” Okay. I look. I see nothing. I do the hydrogen peroxide (just like our mom used to) in the ear bit and they each bubble up like crazy (please don’t judge my daughter’s cleanliness by this, I generally subscribe to the don’t-put-anything-smaller-than-an-elbow-in-your-ear school of thought, she’s really a very clean kid).

Anyway, doc takes a look and finds nothing in her ears (just wax), and only a bit of redness at the back of her throat. Doc suggests an antibiotic if she keeps complaining about her throat. A few days later, when the fever starts up, I decide that we need to take the antibiotic route, and we get the most basic of all – the pink stuff. Amoxicillin. I was unusually vigilant in administering it; she got it exactly when she was supposed to and finished the whole course. But, still, nothing helped. The fevers continued every single day and every night.

On Sunday, I call the doctor and she tells us to come in to the hospital, so off we head to Korle-Bu. Despite the pain reliever I’d given her, the fever still rages and the doc orders some blood work and a blood culture, and they want to give her an injection of Rocephin which is supposed to be an extremely powerful antibiotic, but it only works for 24 hours. So, Alex and I are in the emergency room, and we’re seeing the doctor on call. She tells me that our doctor said that because of the amount of blood they need and the Rocephin that they should put an IV line in her hand. The doctor assigned to do the IV asks Alex if she’s going to cry about it. I tell the doc she needn’t worry; Alex is very brave and can handle it. Well, little did I know that this particular doc failed her class in putting in IV lines. Alex didn’t cry at the first attempt (though I did see her biting her lips), but on the second try, the silent tears just flowed. The best the doc could come up with was, “sorry.” Really, this is the pediatric ward; you’d think these docs would have a little sympathy for the children in their care. This one didn’t. Apparently, she failed compassion class, too. Bitch.

So blood is bottled up and hubby has to run the tubes all the way across the hospital compound to the main lab (and he knows where it is because he had to run there to get the empty tubes!). Unfortunately, it will be days before preliminary results are in, and a week before the final lab results come up. While Sly is out, he’s also been charged with buying the Rocephin from the pharmacy, as well as the antibiotic we’re to take home. The children’s (liquid) version is a hefty GHC 40 and we don’t have enough money, so we get her the adult’s (tablet – horse sized tablet) version instead which is half the cost.

A (nice) older nurse is preparing the Rocephin for the injection. And she comes over with it and tells Alex just to hold still and “grandma” is going to inject it very very slowly into the catheter. Alex, trooper that she is, looks at me and then holds her hand out. Two seconds later, as the nurse slowly injects, Alex says, “I think I’m going to vomit.” One second later, she does. All over me as I’m trying to catch it in my hands (oh, what we mothers do for the sake of our children). The nurse is yelling for someone to bring over a kidney basin, but everyone is ignoring her.

Finally, injection finished, blood work drawn, we head home. Exhausted and smelly.

It would take the whole week’s worth of antibiotic and regular Tylenol and Advil to keep the fever under control. Malaria test – negative. Preliminary blood test – negative. Final blood test – negative. So, it seems we’ll never know what was wrong with our Alex. We only know what the sickness did to her.

Her body went wacky. Whereas in the past I could give her a single unit of Humalog and she’d drop between 4 and 5 points mmol (that’s between 70 and 90 mg), a single unit this time dropped her twice that, sometimes even more. One night, just before the fevers started, when we were conservatively correcting a pizza high, the two units of Humalog that I gave her should have been fine. Instead, 45 minutes after the shot she complained that her eyesight was blurry. I’m thinking she’s spiking from the dinner. No, she’s plunged from 16.9 to 1.9 (from 304 to 34). It took several juice boxes and glucose tabs to even bring her up into range. I will always recall that day as the one when I nearly killed my own daughter. I know, not my fault, it is D’s fault. But I gave her the injection, it doesn’t assuage my sense of guilt.

We are only just now, a month later, getting back to where she was before, in terms of blood sugar and insulin needs. For a long while, I just had to let her blood glucose run high and conservatively correct – no such thing as a pre-bolus then. I wasn’t even allowing her to take her insulin pen to school, because I couldn’t trust it. Her numbers for the month of January are as ugly as I’ve ever seen them (but very pretty on a graph!) and I suspect her A1C will have gone up as a result. Oh, well.

As much as this is a horrible, generally unpredictable disease, I prefer it when it’s just a normal horrible, generally unpredictable disease. This kind of wackiness, I can do without.