Railroad Wife, Railroad Life

On January 4th, I had just come back to the hospital from having dinner at RMH when Kennedy's nurse received a call.  The Sleep Lab had an opening for her to do the sleep study that night.  Knowing it meant we could come home sooner, I told them we'd be happy to take the spot.  Around 8:30pm we headed over to the sleep lab.  About an hour later she had all of the electrodes hooked up and she was ready to go.  I was able to sleep in the room with her, which was a little strange.  This was the first time I'd ever been in the same room with her overnight. Kennedy kept with her every 3 hour schedule for eating.  I was able to feed her with her still being in the crib.  The nurses were amazing and allowed me to help them move her and soothe her when she began to cry.  Around 5:30AM the study was over and we headed back to Kennedy's bed spot.  I headed back to RMH to sleep for awhile. The results for the sleep study finally came back o...

Kennedy had her Swallow Study on New Years Eve.  As predicted she doesn't have anything going down her trachea while she's eating.  On Sunday they put her back on oxygen.  She's at a 1/4 liter flow, but 100% oxygen.  She one episode requiring stimulation 3 hours after they turned it on, but none since then.  I truly believe they tried so hard to get her off the oxygen so quickly that it simply tired her out.  Because her sleep study is the only thing keeping her here at this point, she was placed on the cancellation list.  Basically if anyone cancelled she would be able to take their place.  Thankfully a spot opened up for Sunday night and she will be having her sleep study then.