Monday, June 14, 2010

Sometimes uneventful is great!

Summer had an endocrinology follow-up appointment this morning. Nothing major to report, just a little more information about additional testing and the potential for Summer to develop pituitary issues in the future.

The doctors asked lots of questions about things like Summer's appetite, thirst mechanism, urine output, activity level, etc., and seemed pleased with our answers. Our discharge summary showed Summer would be getting a few tests done today, but that didn't end up being the case.

The doctors asked us to come back early in the morning in about two weeks for those tests, as it's better to test before 8am. We don't have to make an appointment, but will just head in to the lab around 7:30 one day in the next couple of weeks and they'll do a few tests at that time.

They'll look at her thyroid function, growth hormone (indirectly measured by levels of IGF), and cortisol levels. For those who don't know, cortisol is released by your body to help cope with stress. If the initial cortisol test comes back with a value of less than 10, they'll have to do another stim test like the one she had several weeks ago. I hope that doesn't happen or that we get a different nurse because it was a disaster of a test.

They'll place an IV and administer medications through the IV that will trigger the stress response in the pituitary gland, which is to release a hormone that tells the adrenal gland to make cortisol. They'll then test the cortisol levels after 30 and 60 minutes by drawing blood back out of the IV. That's the part that didn't go so well last time, but I know better now. If they can't get blood out of the IV in the first try (or maybe I'll give them two), we'll get a regular blood draw with a needle from another vein. The IV is supposed to make it easier by reducing the number of pokes, but when you have to take it back out and squeeze blood out of the IV site, it ends up being a lot more traumatic! Poor Summer ended up with a seriously bruised foot, and an extra needle poke anyway last time.

If the results from the stim test show a cortisol level below 16, she'll need some hormone replacement therapy. If it's between 16 and 18 (it was 17.3 at the last, flubbed test), she'll only need to receive doses of synthetic cortisol during times of high physical stress - if she broke a bone or had a high fever. If it's above 18, she's considered in the clear.

The catch is that any of these test results (which have been great so far) could change at any time. For that reason, they'll continue to monitor her closely and check again every three months or so. Radiation therapy to that part of the brain also puts her at additional risk of developing some of those hormone problems in the months following treatment.

The great news is that they can replace any of the hormones she might end up not being able to produce on her own. The bad news is that she could end up on medication for the rest of her life. Not a huge deal, but a hassle none the less.

In other news, we got a $120,000 statement of benefits from the insurance company today. That puts the grand total, so far, at over $130,000 in medical bills. Luckily we have great insurance! :)


  1. I do hope that these tests go well and come back with great results. It's amazing how much these things cost. I'm glad you have great insurance. Summer is a beautiful little girl and she has great parents! :-)

  2. Every time I read your posts I am just amazed at how much you have all gone through and how BRAVE Summer is. I hope the test goes better when you bring her in next.
    Also...I am SO glad you have good insurance. I was wondering what the final bill would be.
    All my love to you three!

  3. You and Jason are handling things so well, and it's so great that you have good coverage - you don't need that kind of financial worries on top of everything else. Summer continues on our church's prayer list, as well as all of you in our personal prayers. Love, Aunt Nora