[11-02-08] 5:45pm Mom's update

Today has been sometimes crazy and sometimes really quiet. When I first arrived, the first thing I see is someone in the room without a mask. I saw red! I asked to speak to the resource nurse (the nurse in charge of the floor). I told her everything that happened yesterday and said that if a procedure is set in place, then it should be the same procedure for everyone. We talked for quite some time. She was in total agreement with me about everyone wearing masks when they enter this room and promised she would talk to all the staff today and tell tomorrow's resource nurse about our conversation...AND have that resource nurse come talk with me. We talked about the fact that I (or any other family members or caregivers) did not need this added stress.

I also explained that my concerns were not only for Austin, but also for the other patients. I was not given any instructions about how to wear my gown or mask, and didn't find out that there were special sinks there to wash my hands every time I come onto the ward. Basically, it is like the 3 minute scrub with a brush but without the brush. You press the pump for the special liquid into one hand and with the nails on the other hand scratch into the palm of the first hand - which works the liquid under the fingernails, then do the same with the other hand. I noticed that many people who come onto the ward don't do that. One man who entered when I entered just put on a mask and gown and never washed his hands in any way in the ward!

She also said that she had planned to move Austin into a private room on Tuesday but she would try to get him one today or tomorrow if possible. Austin's roommate was supposed to be moved out to another floor (he is not a BMT patient but the floor he should be on ran out of beds) and the resource nurse said that she would do everything possible to keep the second bed in the room empty. That all happened around 9:00am. About 30 minutes after the resource nurse left, in comes a maintenance man with a ladder and NO MASK! He said that the nurse at the reception desk told him he didn't need a mask if he was only in the room for 1 minute! I left the room behind the man and lo and behold, there was the resource nurse. I told her what the man said and she was very upset and apologetic.

I was ready to hand make a sign to tape on the door (in addition to the red paper that is already on the door saying that a mask and gown must be worn into the room). The resource nurse said she would make a sign - and she did.

It is now 5:45pm and nothing about Austin's room situation (including his roommate) has changed.

As for Austin - how is he doing? Austin enjoyed seeing me on my rants on his behalf. His stomach is queasy but not hurting or nauseous. He is trying to eat but having a hard time. His mouth is sore. Today the doctor's told him that they were sure he would be on IV nutrition soon, as most patients in his situation are. His blood pressure is fine, no fever, headaches or neck pain.

Liz came for a visit from about 1:30-5:30 (Yeah Liz!!). I took that time to run errands. Austin says he slept a large part of that time due to stomach discomfort.

When the doctor's where here this afternoon I asked them why they only take blood at 8pm (and don't get the results until about 10pm). What happens if Austin becomes neutropenic during the next 24 hours? The doctor said that they try to plan ahead based on his stats and get him into a private room.

Doctors just came in and there was a discussion about Austin's stomach problem. Maalox has not helped. I mentioned that Austin downplays his discomfort. The doctor is going to give him morphine and see if that helps. The idea is that the mucositis in his mouth is throughout his gastric system and the morphine should calm that down. Austin said he is feeling giddy at the thought of relief!