03/24/2007

Well, the good news is Emery let me hold him for nearly 2 hours. He desats a usual but the last couple of times Erik and I have held him he was so miserable we had to put him back. Today he slept the whole time and got so relaxed that he is still sleeping soundly. The doctor today decided to start steroids again. I missed rounds and asked when he was planning on extubating, and he said he wasn't, he was only trying to get Emery's oxygen requirements down. I don't know why. They are ranging in the 40% to 60% range. so Monday I'm going to have to call Dr. A again. I know I'm probably not supposed to, but I think at some point my opinion has to be taken into consideration. My biggest fear right now is that Emery is just slowly getting worse, not better. I hear about the 'progress' that he's made thus far, but the people who tell me that don't know Emery. He's on medium to high vent settings and he can't hold his saturations *at all.* He's up and down on his oxygen requirements, and his blood gases are tolerable at best. I think they are running out of options for Emery. He's stable. He's not dying. He's still gaining weight, but his lungs just get worse and worse and they were underdeveloped to begin with. I do have good news, though. Erik and I can demand a new dentist! I don't think we will, though. Emery has a palate plate in his mouth that his ET tube connects to. The palate plate protects his gums and the roof of his mouth. It was put there because he was going to be intubated for a long time, but he grew out of it and needs a new, bigger one. A dentist had to make the mold and put the palate plate in, so if we need to... the option of demanding a new dentist is always there. Thank God for the Patient Bill of Rights Emery's ROP (refresher: Retinopathy of Prematurity... the disease that can cause blindness) is still stable. They will be back a week from this coming Wednesday to check it again. My mother told me that a little knowledge is dangerous, and I know this to be true, so I try not to get angry and tell them what to do because I'm not a doctor. I don't know what to do. I just wish we had a baby that could recover from something instead of a waiting game of hoping the lungs will mature and grow. Hey, I just noticed. The suns not shining, but there are a ton of kids down below in the park.