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Saying A Lot and Nothing At All

By Anonymous

Like back in the NICU days, below is a reprinted email I just sent out to my family updating them on Landon. It says a lot and very little- basically we still have no idea what we are reacting to, so we have very little reaction at all.

In other news my first day of class went well and I wish that my life was uneventful enough to write a post solely about how proud I was that I raised my hand and correctly answered several question in M&A. And that the ratio of men to women in that class is about 10:1. I had thoughts about that. But I'm exhausted, and Landon's having surgery tomorrow, so here's the email:
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I've spoken with the pediatrician and had a few hours to do some google research, so here's what we know now and what the next steps will be.

His glucose levels are definitely high, and there is definitely something wrong with the way his body is processing glucose (or in his case, not processing it). The first thing his pediatrician stressed is that while the levels are high, and something is wrong, they are not at a "treatable level" at this point. So while we will pursue this, it is not classic diabetes, and does not require insulin, right now. She said that for a child of his age you'd be looking at levels in the high 100's before you'd put him or her on insulin injections (his result was 124). She will be referring us to a pediatric endocrinologist for further evaluation and testing.

The next test they would do is the glycated hemoglobin test or A1C. This test gives doctors a look at his glucose levels over the past 3 months, so it is frequently ordered for diabetics to see how their insulin/glucose management has been over a long range of time (the glucose test just looks at levels at that moment). She wants to wait to order it until she talks with the endocrinologist and sees what other tests s/he might want before our appointment because she doesn't want to have to stick Landon more than necessary (which is good, because like his mom, his veins are very hard to find and draw blood from). She did say that I could ask the surgeon tomorrow to do the blood draw while Landon is under general anesthesia for the ear tubes, so we might be able to get that test underway sooner.

One thing that was clear from our conversation is that she was not conveying a sense of urgency about the results. She said we do need to follow-up, but she actually suggested we wait until we get to Austin so that he doesn't have to change doctors in the middle of things. I asked for the referral now just because I know we won't stop thinking about it and we may luck out and get an appointment sooner than she thinks.

She also said that she really believes there is some underlying connection between all of his seemingly random medical issues - the broken ribs, the dermoid cyst, the reflux, the stomach issues, and now these high glucose levels and improperly functioning pancreas. She's going to run a few more medline searches and talk to other doctors while we wait to talk to the endocrinologist. We should hear from her by the end of the week about the other tests and the referral.

So that's that. We still don't really know what's going on, so we're still waiting to react to it. I asked if we should change or monitor his diet in any way and she said no. She did mention that if we see a glucose monitor on sale we could pick one up and start testing his glucose levels every other day or so, just to start making a chart to give to the endocrinologist when we see him. But that is not necessary- I think she just knew I was grasping for something to do NOW.

I will keep you posted about future news on this front and on how the surgery goes tomorrow for his ear tubes. Hopefully the tubes will end the nearly constant parade of ear infections and sleepless nights, and he won't be too furious when he is denied the bottle yet again. Sometime soon I hope to report significantly more boring parenting news. Luckily Landon is totally oblivious to the drama - he's plump and smiley and has recently learned to make big (BIG!) splashes in the tub and laughs in response to your laugh. Someone listening in on our apartment would probably think we're insane because [JP] and I will just start laughing in order to see Landon laugh, and then we all laugh together, about absolutely nothing, and Landon thinks it is SO fun. Other recent developments: talking more to himself, lunging for the kitty when she walks by, getting up in crawling position and trying really hard to move forward but always ending up going backwards, and standing when you prop him up against a piece of furniture. He may be a medical mystery, but he's a darn cute one, and he may have introduced immeasurable stress into our life, but he's added more than enough joy to make up for it.

Love,
[LL]

Full post as published by Lag Liv on April 01, 2008 (boomark / email).