Saturday, June 13, 2009
June 13th. 2009
Kinnick slept better last night, but still had a hard time with her sats. For most of the night, she ran low 90's (91-94). Towards morning, she ran sats from 88-91. She's still on 1 1/2 lt of O2. The temp is definitely under control now. It hasn't been over 99.8. I'm trying to avoid giving any tylenol or motrin. However, she acts like she is so uncomfortable that I have been giving motrin once in the morning and once before bed. It seems to make her feel better. Her poor tummy is just a mess. I think this is where most of her discomfort is coming from. She's still having a hard time with her lungs. The right lung seems to always be worse. This morning has been pretty crappy for her. Her sats have been from 88-94. She's played a little, but just wants to be held. We're continuing to do the breathing treatments and hoping that things will be better in a couple more days.
I received a phone call from my Primary Insurance company the other day. We've always had a nurse case manager due to all of Kinnick and Carver's needs. It's been a big help especially with trips out of town. She's able to get all of our paperwork pushed through for us pretty quickly. Well, she told me that they were closing our case and need for nurse case management since Kinnick and Carver are so STABLE now. STABLE? What's that? We work hard on a daily basis to keep them well. Out of the blue they get sick - like Kinnick right now. I wouldn't call 1 1/2 lt of O2 stable. Carver has SEVERE sleep apnea - this isn't normal. I wouldn't call him STABLE either. Their eyes are also still a problem and Carver still needs another CI. I realize there are others worse off, but is it really that much to ask to be able to call a nurse case manager a couple of times a year for help?