New Room 9/11/05

Today is a much better day than yesterday. We are all very tired today, especially little Theo. He is sleeping now. He has been awake and calm today for a few hours, which is significant. Yesterday, if he was awake, he was crying and clearly in pain. He seems much better today. I don't have to wear gloves anymore to change his diaper. The really toxic period is over.

Today he gets a new drug --I can't remember the whole name but they call it G-factor--it helps grow new cells in the bone marrow which will help keep his blood count up and strengthen his immune system. We will have to give it at home as well. We will also give the mesna (the rescue drug/vitamin he got every three hours for 24 hours following chemo yesterday) so he won't have to spend so much time in clinic for his outpatient treatments. I am very happy that he is feeling better today. He is having a good day today.

We are now in 7-Central West. Still on the 7th floor, but no longer in Intensive Care. Most of the nurses in Central (and all our nurses) are certified in Chemotherapy, which even our nurses in the PICU are not. The oncologists want all the chemo kids in one place. We still have a private room. It's a little smaller, but nice. Even though we obviously don't get the same intensity of care, our nurses have been very good, and I am happy with the floor. As long as we don't have to go to the "East side" (which is my name for 7-East). We had a very bad experience over there where we spent one night before he had to have his shunt put in. I'm pretty sure nobody would have noticed that his ventric tube site was leaking if I hadn't said something. Anyway--we are focusing on the positive and I'm happy with our nurses and the care he is getting. Our room is 7-222 and for those of you who have the phone number, the new number is the same except the last two digits are now 46.

If you want the number and don't have it, email me and I'll send it to you. I expect that we will be in this room till he comes home, hopefully by Friday. No one has told me that, it's just the day I have in my head for some reason. We don't know exactly when he will be discharged.

Keep up the good thoughts and prayers--
I'll update you tomorrow.

Love to all--
Karla