Trip 3-Breathing Problems
6:00 pm - The results of the chromosome test have come back negative. Originally the geneticist said that indicated only that she would need another test. But maybe she's doing well enough that they'll cancel that - we don't know at this point. A new
Trip 3-Breathing Problems
5:30 pm - I just arrived back from the hospital where I saw Emma and dropped Miriam off to stay with her. Emma is looking great! She's still very sleepy because they are gradually weaning her off all the sedations, but she looks much more comfortable and happy.
Trip 3-Breathing Problems
11:30 am - Emma is coming off the ventilators now! The hospital just called. Wow! We've been hoping for this for so long, it didn't seem like it was ever going to happen! So, change of plans, we'll be heading back down to Little
Trip 3-Breathing Problems
4:00 pm - Miriam called the hospital this afternoon. The nurse said that Emma is doing really well. They turned the ventilator "way down" and lowered another pressure number, and the oxygen levels in her blood stayed where they're supposed to. So that's good
Trip 3-Breathing Problems
7:00 pm - Just a note to let you know that Miriam and I have returned home for a few days to spend some time with Elise (who is THRILLED to home again!). Emma seems to be improving VERY slowly, so while she's stable but mostly sleeping we
Trip 3-Breathing Problems
Yet another day of waiting has passed. Apparently the ear doctor did come yesterday. Oddly enough, I was there all day and didn't see them, but they must have come while I was taking a nap. I saw one lady, so she might have been the ear doctor
Trip 3-Breathing Problems
10:30 pm - Emma is fine, but still on the ventilator. The doctors have upped some pressures and medicines to hopefully help her lungs strengthen a bit. Some of the numbers seem a bit better today. I'm going to try to talk with the doctors tomorrow about all
Trip 3-Breathing Problems
9:00 am - I'm back down in Little Rock for a few days with Miriam and Emma. Emma is doing really well. Her numbers are looking pretty good, and they're really starting to talk about taking her off the ventilator (maybe today!). There's still
Trip 3-Breathing Problems
7:00 pm - Email from Miriam: I finally got to talk to the resident doctor today. She explained what the plan is and also explained better what happened over the weekend. I had never got the full story. Basically over the weekend when they tried to wean Emma off the
Trip 3-Breathing Problems
2:30 pm - We had a great Thanksgiving weekend with family. And it was great having Elise, Miriam, and I all in the same building for a few days as we stayed in an apartment Wednesday through Sunday. Emma is still waiting on her heart cath - looks like it will
Trip 3-Breathing Problems
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
Trip 3-Breathing Problems
As most of you have hopefully heard, we are still in Little Rock after being discharged yesterday (Saturday). Emma was doing pretty well, though I could tell she was having a little more trouble again- grunting while breathing on Saturday. She also started the day with a long episode of