Nothing new

Nothing really new to report. We sat around waiting all afternoon for the call to go down for the echocardiogram. They were backed up and over booked, so at 5:30 I found out that it has been rescheduled for 1st thing Friday morning. Since I have to work, I won't be able to be there holding her hand. I'm sure she'll be brave though and and will do just fine. They are still planning on no sedations since she's bouncing up and down with the fever. They drew lab work on the 27th for new cultures, but so far nothing has grown. I'm not surprised. It's the same mystery illness that she had last time. This time I think I just acted on it sooner and we didn't have to go through the trauma of aspirating, not breathing and being Life Flighted in the wonderful helicopter at 2am! She had to have a calcium bolus today because her ionized calcium was low. This was the 2nd day in a row. They will check it again tomorrow. This is one of the lifelong issues we will have with her DiGeorge Syndrome. She's already on Calcitriol (Vit D supplement) and Calcium Carbonate (4 times a day), but her level was still low. Go figure. If it dips too low, she's at a greater risk for seizures. Anyway, her temp today stayed at between 38 and 38.5 not super high, but still a fever. She was super sweet and cuddly today. I couldn't stop myself from kissing her chunky little cheeks. She's lost her smile, but she did attempt to give me a couple kisses back. So cute, she just sticks out her tongue when I'm kissing her, but I can tell from her eyes that she's loving me back. (I'm the Mom, I'm entitled to my delusions!) I felt so bad for her when the nurse came in to suction her nose. Her saturations had been kind of low (70-72) for over 30 minutes, even after increasing her oxygen. The nurse decided it was time to clean out the nose to help her out. Poor Elaina saw the suction hose and spit out her pacifier and started crying. It just broke my heart. As soon as the nurse was finished I picked her up for some snuggles and she was soon asleep with her saturations back up to her beautiful 82. Lesson: Nasal suction is not fun, but is sometimes necessary. And you get cuddles from Mom when it's over. :)