What's the deal with Lacy???

We have a doctor's appointment this morning. Hopefully we will be able to get back some lab work to better understand what is going on with Lacy!

Our suspicion is that she most likely has a viral infection that is slowly turning to bacterial.

This is all actually pretty normal stuff for kids. If you have a kiddo without the genetic problems, you would have a snot covered whiny kid with a mild fever. You would increase the fluids and wait for it to pass.

We are not offered that option. We need oxygen and even more ventilatory support for our kid.

You know when you have a nasty chest cold and you have to work a little harder to breathe because there is so much junk in your chest? You would say something like "I feel like and elephant is sitting on my chest." Well, since your brain is wired correctly you'll automatically begin to work a little harder to keep everything where it should be.

Lacy does none of this. She doesn't increase her need to breathe. In fact, she just lets it overcome her without a single complaint. In our case her oxygen saturation was suddenly 77!! For those of you NOT in the medical field, this is BAD. Lack of oxygen to the brain = brain damage.

If your O2 saturation was 77 you would definitely know something was wrong. Your lips and fingertips would be blue/grey. Your heart would be POUNDING. Your lungs would be working DOUBLE or even TRIPLE time to get enough oxygen to your brain.

Once again, Lacy just sits there and sings a song and watches TV. Her brain doesn't even register to her that there is a problem.

That, in a nutshell, is CCHS.