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
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
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
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
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
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
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
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
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
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
Trip 3-Breathing Problems
6:15 pm - Miriam and Emma are still in Little Rock. Emma had a breathing fit last night as we loaded her into the car, so we brought her back into the hospital for observation over night. Then this morning she had a really bad episdode, similar to the