Tonight is another first.
Our pulmanologist (spelling???) decided to have Evan use supplemental oxygen while he sleeps. Evan's oxygenation level was below 90% about 5% of the time when he had his sleep test (normal is around 97-98%). That's not too bad. It's also consistent with a premature baby. I think this is something he will grow out of. If not, that's okay too. Tonight is the first time he has used it. It's going well so far.
He has a large machine on the floor next to his crib. It is plugged into the wall and can create oxygen indefinitely. He also has a narrow tank about 4 feet tall in the corner of his room. They said this is in case the power goes out. Geez, they're DEDICATED! What happened to the casual "just to be safe" attitude? What if there's a tornado? Will they send in the military for us? :-)
He also has a small tank in a shoulder strap that we can bring with us if we go out, etc. I don't think we really need that at this point but I guess it's all or nothing when a Doctors tells them to get us "set up" with oxygen.
We'll keep you posted!
Eric
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This site was created to help all families with an interest is Short Rib Polydactyly Syndrome (SRPS). It is an effort to provide information and support on a topic that is dominated by obscure, cold medical journals. We have personally gone through what you, or someone close to you, has gone through or may be going through now. Please to not hesitate to get a hold of us with any questions you may have. We're also here if you just need to talk. Thank You, Eric and Erin, EGL2004@gmail.com.
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