[evansmom]

Hi Jen,

I'm not sure about your son's room, but for Evan, he was moved to a Laminar air flow room on transplant day and stayed in there (with the exception of having to leave with a mask on and wrapped in clean sheets to have a CT scan and ultrasound) until engraftment day. Everyone who then entered the room had to do a 2 minute scrub in the anteroom, then put on a gown. All of Evan's belongings had to be wiped down with Virox before going in to the room and again any time an item hit the floor. No staff member was permitted to work if they were unwell, even with an insignificant dry cough. That was a strict rule.

I quickly became aware of the different nurses' practices. Most were extraordinarily cautious to the point I could relax around them while a few cut corners and broke rules. Nurses are not allowed to sit on the child's bed while in isolation and one of our nurses came in and went to sit on Evan's bed in the same gown that she had worn next door with the child who had an aspergillus skin/bladder infection (I knew this because I made a point of paying attention to everything going on around us - you have to). Of, course I stopped this nurse, told her to step out where she and I then went to her charge nurse. We never had this nurse again. I have never been one for confrontation, in fact I hate it, but I had to put my discomforts to the side because being Evan's advocate was number one.

The main thing is, in my opinion, keep the number of support staff coming in to a minimum. I was lucky because Evan was 11 and was not interested in child life. He was content with his handheld games, the laptop and the TV. Make sure everyone washes their hands thoroughly where you can see them and if you are uncertain, ask them to wash again or use the hand sanitizer that you hopefully have in the room.

Nosocomial (hospital acquired) infections are prevalent. We know this as we watch MRSA and VRE spread through wards (I am a nurse) despite best efforts to isolate and contain these bugs. So when the patient has neither an immune system nor neutrophils to ward off bacteria, viruses and most importantly, fungal invaders, as parents, we must demand srtict adherence to isolation protocols. It would only take one nurse/doctor/child life worker with dirty hands to mess everything up right now.

Just don't be afraid to offend. If you don't like what you see, speak up immediately. Engraftment is around the corner, and then everyone can relax (a little).

Please keep us posted with your son's progress when you can, we'll all be rooting for him here!