8:30 pm – I talked to Miriam this afternoon. The geneticist and pulmonary specialist have both come by to look at Emma. The pulmonary speciist (lung doctor) had some theories that line up nicely with what we have experienced. Basically, it looks like her body’s normal response to a slight lowering of oxygen is extra sensitive, and it’s backfiring a bit because the increased pressure in the heart, normal for this response, is pushing more blood around the not-quite-sealed hole. So if she’s congested or refluxing, and her oxygen dips a little, this automatic response triggers and leads to a breathing problem.
It’s not completely confirmed, but this explanation seems to fit very well with what we’ve seen. And the solution is fairly simple – a little bit of medicine to keep arteries wide open, and stay on portable oxygen until she grows a bit more.
So we’re really hoping Emma will be off the ventilator tomorrow. Miriam’s family is coming down to Little Rock tormorrow, bringing Elise, and I’ll be there too in the afternoon. Then they’ll return in the evening, and my parents will be coming down, and staying through Thursday. I’m planning on keeping Elise down there with me through the weekend so that she and Miriam can spend some time together – they’ve hardly seen each other lately. Hopefully it won’t be long until we can all come home.
So things are looking up! Thanks for your prayers.