Monday, March 31, 2008

Saying A Lot and Nothing At All

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:
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.



  1. Keeping you guys in my thoughts and prayers. Having suffered through a cancer scare with my roommate's mom, a divorce scare between my own parents, and my own bout with never-ending hives and angioedema during my 2L year, I know how trivial your studies seem right now. Hope things go well tomorrow.

  2. Aw LL - I'm so sorry for this roller coaster you guys are on. This sounds a little flaky, but I like the idea that children pick their parents - Landon couldn't have picked anyone better to see him through all this.

  3. Oh, I bet he's on the brink of crawling! Then your kitty will have to *really* watch out! :)

    Landon has my complete sympathy with acquiring yet another specialist, and you have my sympathy for having yet another uncertainty. But he's such a charming boy - I hope we get to meet him (and you) in person in a few months, and all of this will be ancient history.

  4. I really hope you can figure out what's going on. Poor little guy.

  5. This kiddo is his own episode of House!! ((hugs)) praying for you all

  6. I get the same vibe she had . . . that there surely has to be something connecting all of these problems. I hope his surgery goes well . . .. and the stupid ear infections finally stop!!!

  7. The tubes should make a huge difference in the lives of all three of you! Good luck. And good luck with the glucose problem too, it sounds like you are in very good hands.

  8. I hope they find out what is going on. :( I agree with your ped and wonder if there is something connecting all of these issues. It seems like too many things in Landon's short life for it not to be connected.

  9. Hang tough are very strong. If I had had to go through all this with my first child I would have been a basket case.

    Something you might want to consider is delaying further vaccination for the next year or so...give the little guy a chance to rebuild his immune system after all he's been through.

    Here's a link to get you started on some research.

  10. Good for you on answering the questions correctly. You are still on your game and have a sick baby. I am thoroughly impressed. I would hire you as my lawyer. I hope they can figure out what is causing all these seemingly unrelated symptoms. Poor guy. I am so excited about his ear tubes. For both you and him. I believe CVS has glucose monitors on sale all the time. Just keep a look out there. I read some blogs like Money Saving Mom that post all the deals at stores including CVS.

  11. Phew, at least he doesn't need insulin for sure or right away. I'm glad the doctor wants to investigate and find a possible source for all these random medical issues.

    Hang in there, you guys are doing so well! It's so good that you are enjoying Landon and giving him such a happy experience through all this. Happy thoughts to your whole family!

  12. I bet two things are going to happen that improve the sleep issue for you.

    1) The tubes are going to make him feel SOOOOOOOOO much better.

    2) He's going to get the hang of crawling. Lots of babies get very messed up, sleep-wise, when they're right on the verge of hurdling over some huge developmental milestone.

    Here's hoping that those two things happen and you get back to having some full nights of sleep. It's so unfair when they tease you by having some good nights, then going back to waking up. Even one night of semi-long stretches makes you remember how delicious it is to have a full night's sleep.

    In the meantime, I'm not sure if you've ever dropped by, but has lots of parents commiserating on sleeplessness, fussiness, work-life balance, etc. It really helped me through some rough patches.