How was her appointment???? Well the x-ray shows that she still has the atelectasis Very disappointing. Therefore we met with respiratory therapy and she finally had us increase the pressures of the cough assists to almost 40 both ways. The nutritionist we were looking to talk to was out sick. The fill in really didn’t know about SMA. As for the doctor he just listened to her and told us the results of the x-ray. He then discussed things/people he would like to put us in contact with. Ex; a GI study to officially see if she has reflux, and their P.T. As for the sleep study. Just not fun. She just cries the whole time they are hooking her up. Then it was the night they wanted to introduce her to bipap and see what settings she would need??? So then finding a mask sucked. Eventually they were done setting her up but she had a long night. The bipap kept making her spit. Once she fell asleep she probably woke up at least every hour fussing. It was a long night. It could take up till 14 days to get the results of the sleep study so now we just wait. He did say he wanted to try to rush the results hoping to have them next week. We will see. As for Jocelyn she is happy to be home:)
Monthly Archives: May 2008
So last night little Miss Jocelyn was laying in her bed. She wanted the pacifier and Daddy had moved her to her back. She rolled back to her side to get it. We were so proud of her. I do believe some of it was the way she was laying she was able to use her arm to get her over but it is a huge accomplishment in our eyes. We were able record her doing it. So if you want to see it, it is in the “I’m one” pictures. Yeah! What a big girl.
Some new info. about the sleep study issues…. So it has been determined that bipap will be better than oxygen. UNC is not as equipped as Duke is to do the sleep study with the bipap so we are being transferred to Duke. We went yesterday to meet the doctor who specializes in pulmonary and sleep disorders. So far things are well. What we did learn through this evaluation is that Jocelyn has atelectisis(partially collapsed lung)still or again??? He recommended that we do aggressive care for the next two weeks then begin the sleep study with the bipap. This way she will be closer to her norm. So as of now she will go back to Duke on the 26th. Then do the sleep study on the 28th as long as everything goes well.