"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Friday, December 19, 2008

Brenner Children's Hospital

Another 100mL of blood transfusions (2 50mL transfusions) over the last two days. It's hard to believe that the last transfusions only lasted 9 days. We are starting to learn clues and signs that he's feeling lousy. He becomes a lazy nurser, turns very pale, and sleeps much more than normal. Nonetheless, this is so frustrating! We went to the pediatrician yesterday for a follow up because he's having trouble putting on weight because of all the blood issues and the lousy nursing. We met with a PA who checked his bloodwork, called his pediatrician, called the heme/onc clinic and then came in and told me that Dr. McLean wanted to talk to me. Seriously...at least have the nerve to tell me that I need to head back to the clinic for a transfusion....CHICKEN! He's having his heel poked every other day for bloodwork and watching the nursing staff get the IV started will break your heart. This has got to stop!

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