8:30a.m. I stopped by to check on Harli while I was waiting on the pharmacy to fill Blair's prescription. Harli got her blood transfusion last night, and she also had a rough night with several episodes. Most of Harli's episodes were corrected by herself, but the number keeps increasing. I guess when the doctor and nurse practitioners made their rounds this morning they decided to leave her on the vapotherm machine for another day, but depending on the number of episodes will make the decision whether or not she gets switched to CY-PAP. The doctor and nurse practitioners are hoping that once her body gets adjusted to the extra blood that her episodes will decrease.
I brought Blair's prescription back to the room and stayed with Blair most of the day. I called periodically to check on Harli, and got all good reports. Blair's rash has spread in some spots but has gone down in others. Her fever is as low as its been since Tuesday so I am assuming the benadryl is working now we just have to be patient that the rash disappears.
4:00p.m. I headed over to Riley to check on Harli and the nurse gave a pretty good report. Harli had three episodes to that point and only two of those episodes needed stimulation. While I was standing at Harli's bedside her nurse practitioner came up and checked on Blair and so did one of her day nurses which meant so much. Harli slept most of the time I was there, but at six tonight Harli decided it was time to wake up and move around. She spent an hour and fifteen minutes moving around as much as possible, it wore me out moving from one side of the bed to the other to see her face. When she was done moving though she crashed and had another episode which did not require stimulation.
I ask that everyone continues to pray for our family and especially that our spirits stay positive.
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