Friday, April 18, 2008

Taylor's new meds

I mentioned in my last post that Taylor would go to Orlando for her CF clinic on Wed.

Here is her update!

Her weight (9#s 10 oz.) was the same as at the pediatrician's. Which is no surprise since it was approximately only 24 hours later. But, for me, this is very good news because now I know that the scales are in agreement and so when we do weight checks, I'll know that what the scale says she's gained is accurate.

Overall she's doing well. The dietitian said that increasing her enzymes from 1 1/2 to 2 was perfect for her weight. The pulmonologist said her lungs sound great (clear of mucous), and as far as growth, she's typical for my kids. A little short, but weight for height is good.

They did a throat culture to see what might be growing in her lungs. It's not 100% accurate because there could be something in her lungs that isn't in her throat, but at her age it's the best way to get an idea of what's there. When she's older, they'll have her cough first and that should bring up whatever's in her lungs. Unfortunately, we just found out that she cultured for Pseudomonas, so we have to put her on a nebulized anti-biotic, called TOBI (Tobramycin). Jackson didn't have to be on this until he was a year old. Lincoln has never been on it (Praise the Lord!). So, it's disheartening to have her on it and only 2.5 mos. BUT...it proves to be a positive part of keeping CF lungs healthy longer. I will have to do this 2x's a day. The medication cost over $3,000 for a 28 day supply. We're thankful that insurance covers it! Most treatments with TOBI are 28 days on, 28 days off and then 28 days on again to complete a cycle. But, we will wait to see what her next culture shows to determine if she has to do the 2nd 28 days. Because it's an anti-biotic, I prefer we use it as little as possible.

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