Thursday, March 6, 2008

Medical Update - Thursday, March 6, 2008

The bone scan came back negative - no spots on her bones. The "thyroid-like" hormone came back low - another good sign that there is no cancer. We are still waiting for a few tests - and still have no answers to the reason for the high calcium.

She started calcitonin last night (an injection) and will continue to get it twice a day. Her calcium came down in the 12 range today. Still not quite 10.

The speech therapist came to evaluate her suck/swallow/feeding issues today and was extremely concerned. Her suck is barely there and her gag was not very sensitive at all. She recommended an NG tube - a feeding tube. She absolutely hated it and cried for two hours. She let her nurse know about it too! For a little girl who has very low tone, she can sure put up a good fight. She had to get a second nurse to hold her down!!!

Of all of the things she has had to endure - this pains me the most for her. I want her to be able to eat by mouth. She worked so hard in the NICU figuring it all out. And she has done so well with her eating for over 4 months. And then so suddenly she can't eat at all. It hurts my heart.

Obviously, it is best for her, so she does not aspirate her food into her lungs and develop pneumonia. So they had to find a formula for her that is low in calcium and she is getting a constant flow of formula through her tube - a bit more than an ounce each hour. She seems pretty contented as I write this and that makes me feel better.

The endocrine team of doctors seem to suggest that this high calcium issue may have been something she has had in the past because she has some calcium deposits on her kidneys and they don't just appear all of a sudden. So it follows then, that this may be something that will be a chronic issue for her in the future.

I think that's all for today. More tomorrow . . . . . . (including highlights of Drew's visit to the hospital yesterday - FUN!!!!)

1 comment:

Melinda said...

Hey there, I lurk, for the most part on the BBC SB board, and saw your post today, and came to check out your blog. I wanted to let you know that I've been in a place similar to the one you're in right now. My little girl is completely dependent on a feeding tube for her nutrition, and has been for almost 2 1/2 years. Of all the differences between her and other children, the one that has been the most difficult for me to deal with has been the feeding tube. But it really sounds like little Emily is pulling through well. Keep trying, keep encouraging her to eat from a bottle, and don't become dependent on the pump when it becomes so frustrating trying to get her to eat by mouth. You will all be in my prayers tonight, and until you post to say Emily no longer needs the feeding tube.