Not quite what I expected

Thank goodness it is morning because last night did not go as I thought it would. First of all we were not placed on the 9th floor but in the Abercrombie building at TCH. The Abercrombie building is the old buildng and the rooms are not the same. It is hard to know more about your child's illness than the doctors or nurses. I feel like I am the one making sure he is doing o.k. For example, late last night is hemaglobin was at 9.9 and first thing this morning it had dropped to 9.2. They thought he was great but at this rate tomorrow he would be 8.5 and Wendesday he would need blood again! When I explained this to the doctor she says, "Maybe I should call somebody in that department and ask them what they think?" I don't understand why they didn't put us on the hematology/oncology floor but I have to let that go. I am not the one in charge. James Thomas did not sleep last night. He cried and cried until about 2:45 and then they came in every 30 min. to do who knows what, which woke him up every time. Then at 6:50 the lab tech came in to draw blood and he has been up ever since! I think tired is an understatement.

I know this post sounds negative and I am trying to stay positive and be thankful for all the good things (not being on oxygen anymore, JT's eating is GREAT, and the fact that he is alive) but lately I feel this poor kid just can't get ahead. We are doing well and James just brought us breakfast. My mom is on her way into town. We are going to be discharged sometime today (the nurse warned it may be awhile) and my mom is going to let me get some sleep. I am sure she will enjoy her one on one time with James Thomas as well.

That is where we are today. Thank you for all the support and prayers.