Find out how a rare breathing disorder has changed the life of my young son and my family.

Friday, October 27, 2006

Growth Hormone Test

As you know, Josh is on his ventilator 24 hours a day now after the doctor in Chicago checked his oxygen and carbon dioxide levels through all kinds of activities. Well, that same doctor wanted Joshua to be further tested to see if he needed growth hormones, too. So we took Joshua in a couple of weeks ago to his endocrinologist for this test.

The growth hormone study is done by starting an IV and giving Josh some kind of solution. Once all the solution goes in, they draw blood out of the same place that the IV went in. Then they wait 30 minutes and draw blood again. Another 30 minutes and they draw more blood. And then they take out the needle and you go home. They told us they would let us know the results and we'd plan what to do next then.

The endocrinologist's office finally called this morning with the results. They checked for levels of certain things in the blood. One of them - cortizol - seemed to be at a good level, BUT Josh's growth hormone level was NOT good. They said they like the level to show 10 or more and Josh "peaked" at 0.6. He didn't even get up to a ONE much less a TEN! So he failed the test miserably.

So what does that mean now??? They are going to send the results to our insurance company to make sure it will pay for Josh to receive growth hormones. I asked how that works - do we go in to the office every so often for them or is it like a prescription that we fill or what? They said NO, the growth hormones would be sent to our home and we would need to be trained by a nurse to give Josh injections. He would have to have these shots every single night for YEARS - until his body completes its growing. And the hormones are very expensive, so it could take the insurance company weeks to decide to pay for them and for us to be able to start them.

But because Josh's results on this test were SO LOW, he is basically NOT GROWING. The doctor's office wants Josh to have an x-ray taken of his hand and wrist. I am guessing it is to see at what stage Josh's bones stopped growing and to have something to compare future x-rays to to make sure he does grow with the hormones.

Meanwhile, we still do not have nursing care started. Again, we DO NOT QUALIFY for Medicaid. And our insurance will only pay for a very small amount of nursing care in the home and ONLY if Josh is homebound - and not in school. SO, since Josh IS HOMEBOUND now, we are hoping to get SOME nursing care for him - through insurance - even if it is a very small amount. Anything will help - especially if I'm gonna have to start giving Josh shots, too. I dread that.

I did share all this with Josh and I don't think it is all sinking in with him. He hasn't said much about it. He prefers to only talk about the good stuff - things he wants to do and what he wants for Christmas - that kind of thing. I still need to get Josh in to see a counselor - as the doctor in Chicago asked me to do. I now have the name and number of one here and just need to get the appointment set up - which I plan to do later today.

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