Long Night, Long Day

Kyara did not sleep a wink last night. I mean literally not one minute! Her heart rate was elevated, she had alot of tone in her muscles, and she was breathing like a steam engine. Today has not been much better in terms of the "storming." She can't seem to get comfortable to sleep, and the breathing is crazy. Gunars and I talked with the doctors about her medications and our concerns about her not sleeping. They are working on it. I am getting FRUSTRATED!

Kyara TRACKED!! In speech today, Maria, the speech therapist asked Kyara to look at a picture to her left and she did, then she followed the picture as Maria moved it back to midline (in front of her)!`She also looked and found objects when asked in PT/OT. These are huge things, she is not consistently doing them, but they are great first steps. I really think that once she is able to get some sleep, Kyara is going to make more strides in therapy.

Today Kyara had a little scare with respiratory. A scare doesn't really describe it. She is fine, but she has started to receive breathing treatments (albuterol). Well, I guess the first treatment must have loosened up a whole bunch of stuff, because she started drooling brown secretions that smelled like tube feed. She was done in speech with Bunny and Maria (again) and our nurse came down to give her a med, when our nurse saw Kyara she ended the speech session and took Kyara back up stairs. They were still suctioning tons out when I got on the scene. "Better out than in", right?

Gunars was supposed to go home last night, but sometimes flying stand-by throws you for a loop. He was not able to get on any of the flights and all of the flight this morning and afternoon were overbooked, so Gunars had to work from the RMH today. He is back at the airport now, and I know he didn't get on the 5:20 flight. I hope the next one is a better shot!!!

Kyara is calmer right now than I have seen her in 3 days. I pray she sleeps all night. I would love to see how she reacts with a good 12-14 hours of sleep in her! It is getting rough staying up with her all night, even with taking turns, and I find it demoralizing. I am not sure that is the right word. What I am trying to say is that by the morning, not being able to comfort Kyara during the night, I get very frustrated and almost angry. I know it is not her fault that she is not sleeping and it is not fair to be angry, I just want her to sleep so bad!! I feel completely helpless. It is NOT a good feeling.