Thursday, December 1, 2011

Some more setbacks

Cameron must have gotten tired out and stopped drinking very well from the bottle so she definitely isn't getting her feeding tube out this week. She just needs more time to learn but it's frustrating because we're at the point where she could come home if she was doing everything right. She is meeting the weight requirement (which is 3 lb 15 oz, she is 4 lb 1.5 oz), she just needs to be feeding from the bottle 100% and get off her medications. With such a short list it sounds like it would be simple but it's not.

As far as her medications go, we took a step backwards. Over the past week she started having more and more apneas which are the cause of the oxygen desaturations. They had stopped her caffeine last Monday and everything kept getting worse so they had to put her back on it. Since they restarted the caffeine her apneas and desaturations have stopped and her breathing seems to be perfect but she has to figure out how how to keep breathing without it. I'm worried that since she is still having apnea episodes this close to the end that something is going to happen when we take her home. So now not only does she have to get rid of the lasix, but the caffeine too. I have a feeling these last weeks are going to go so slow.

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