The sleep lab results came back today. Elaina gets her c-pap! In fact, the results have started quite the commotion here! Elaina has severe obstructed sleep apnea. They told me that she had 20+ episodes every hour that they were monitoring her. They also recommended a follow up by the ENT team (ear, nose, throat) as soon as possible. So they came by today and after a thorough examination, it's been decided to take her to the OR for a scope. I'm little confused as to what they are doing, after I got back from break tonight the nurse was calling it a bronchoscopy, and I know that she had one of those a while ago when she was intubated. Anyway, from what I understand, they are going to put a little camera down her throat to see if they can find any obvious obstructions. I'm not quite sure what will happen if they do, but there's got to be a cause behind her apnea, so we'll just wait and see!
I also have a Care Conference scheduled for Wednesday afternoon. I'm having one because I want to be able to talk to not only Elaina's team in the PICU, but her Cardiologist as well to make sure that we're all on the same page. We're also going to discuss the whole Stanford thing. I know that they started the referral last week, but they told me it could take up to a month to hear anything back. Anyway, I want to know what Elaina's cardiologist thinks about the idea as well as what his future plans are for Elaina. I'm preparing myself for the worst case scenario. They haven't given me the most positive outlook so far, so I'm not fooling myself into thinking that it's going to change dramatically just because I asked for a care conference.
So today was hectic busy, but that seems to be the norm here. Elaina still had her fever today. She's got the team pretty confused. They're starting to wonder if the fevers are a sign of heart failure, but she doesn't have any other prominent symptoms that would point to that, so it's just got everyone puzzled.
Well, I am totally completely exhausted. I didn't find out until 11pm that I didn't get a sleep room, I was on the stand-in list (in case one of the other families went to a hotel or something) but I didn't get lucky this time. Oh well, I'll sleep on the pull out in Elaina's room. It's not the most comfortable thing in the world, but it sure beats sleeping in my car!
Please help me pray for my friends the Bailey's. Their daughter Brooklyn isn't doing well. She's just one month old and the doctors don't think that there is anything else that can be done for sweet Brooklyn. She's got so many clots caused by procedures that they don't know how much longer she'll be able to hold out. Her family has been given the "talk" and now have to make the hard decision regarding Brooklyn's life. I know that prayer is what has gotten Elaina and I to this point and I have faith that the Bailey's can find comfort and the answers that they seek.
Thanks for all the love and support!!