Loving Taylor

Any thoughts that we would wake up today and the day would be better have quickly been squashed. I guess I should not even say wake up because I don't really think Taylor or I slept last night. Her platelet transfusion didn't even start until 10:00 and luckily she didn't react to the transfusion. It is just difficult to do it so late because she is not able to sleep. Their are vital signs every 15 minutes, a pulse ox beeping and then she spiked a fever again during the transfusion so we had to fight with her again to take Tylenol. After that was all done, she just couldn't sleep. She is in pain and can't get comfortable. She also has 3 antibiotics running all the time so her pumps seems to beep alot!! So....there was no sleep.

She continues to be at zero, continues to have high fevers, and continues to refuse to eat. We also found out that she will need ANOTHER platelet transfusion today. Her platelets did not bump up high enough from last night. This is most likely because her fever is burning up all the platelets. So....today brings another round of fun. Oh....did I mention, we also had to move rooms again this morning!!! Today, she will start TPN nutrition, have a transfusion and hopefully sleep. I still haven't gotten any of her meds in her today. Even when I mention taking meds or doing mouth care she screams and cry's. Today she asked me, "Mommy, why do you make me do all this yucky stuff?" When does it end?????

I am off to lay down with her and try to get a nap in....we are both exhausted.