Things I haven't been writing about |
| Articles - Diabetes Articles | |||
| Tuesday, 20 July 2010 04:20 | |||
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From my pile of hibernating "drafts," before it becomes completely irrelevant:
It's been busy lately. A couple of weeks month ago, Liam had his endo appointment. Our A1C dropped a measly 0.1, but I can't say we expected much better after his round with strep throat and antibiotics. The doctor was happy with his numbers, which is more than I can say for myself. Overall, he had been spending a lot more time in goal range, but we were having daily lows and highs beyond what I was okay with. I tried talking to his doctor about a solution, but found that although the CDE's at our group and the NP he sees every other visit can download the PDM for Liam's OmniPod to get all of his logs and reports, our doctors aren't familiar with Co-Pilot, the system his pump uses and they had to use the printouts I'd brought for my own reference to get an idea of what was going on. Not a problem, since I had them with me, but I would have enlarged the print if I'd known they weren't going to do the download they'd done at every other appointment since we started on the pump. With my reference sheet out of my hands, I felt even more disorganized in my thoughts. I think when I talk about Liam's diabetes, my sense of being overwhelmed is very evident. I wouldn't say it's predominant in how we manage his day to day life, or even his Diabetes in general- but when I try to talk about it, or explain problems we are having, I get overcome by the details. My brain gets way ahead of my mouth, and I stumble around trying to verbalize the relationships between his basal rates and ratios and corrections until I'm sure I sound as crazy as I feel sometimes. It makes me frustrated to not feel I am communicating effectively- especially about something so important. I wish they could download my brain.
My babbling led to the doctor asking how we were sleeping, which led to maniacal laughter, which led to the doctor suggesting we were too stressed about all of the variables of the pump and maybe we should consider going to back to injections. While my immediate reaction was probably more along the lines of thinking HE was crazy- I can really appreciate that he takes the parents ability to cope and stay functional seriously- after all- our child's life depends on it. If we were the type who were actually overwhelmed beyond all reason- that suggestion could have been a good thing. Anyhow, we left the appointment feeling we'd made little progress and having learned nothing new. While we were happy that the doctor was happy with things, it was unsettling to leave feeling we had more to accomplish and being given no more direction on how to move forward. I don't think it was any more their fault than ours; we had an afternoon appointment that ran up until 5:00 PM, and while we explained everything we felt was important to the fellow working with our doctor, she then went to discuss things with our doctor before returning with him. Not all of the points we'd discussed with her were addressed, and it wasn't clear to me what she had told him and what she hadn't. I really like her, but the whole format was weird. After that, we decided to take things into our own hands. Well, things were already in our hands, but after trying to talk with a CDE about his issue and then coming out of his appointment with no real answer, we decided to see if we could figure it out on our own. My biggest problem was that after Liam's bout of strep throat, his sensitivity to corrections doubled. Meaning before, 1 unit would drop him 200 points, and after he finished his antibiotics, 1 unit would drop him 400 points. We certainly hadn't expected him to start needing LESS insulin as time went on, but what was really weird is that not one other thing changed. He didn't seem to be more sensitive to his basal or bolus doses. It's all the same insulin- so that doesn't make sense. His settings were skewed disproportionately so that while he had the lowest basal rates of the day, he was getting the most insulin per carb, and there were insulin tails flyin' this way and that and tiny corrections dropping him 400 points- you get the picture. Messy. Most of the time things were working, but with his basal being as low as it could go- he was still going low. I read some things and talked to some people, and I started to doubt myself. Enter mathematics and logic. (Don't worry, they're leaving soon...) Long story short, we jumped to a radically different set of pump settings that made sense mathematically but had almost no actual correlation with Liam. Go figure. So we gradually eked our way towards something that worked a little better, one tiny bump at a time. And what do you know... we're basically back to where we started. Only now we're short 50 or so test strips until our shipment comes in August. So you mean to tell me that Diabetes, while making liars of everyone who told me algebra was a waste of time that I would never use in REAL life (HA!) and making me mumble numbers under my breath like a crazy person- actually has very little to do with mathematics in the long run? Or logic?!!?
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