Sorry I haven't been able to update! Here it is! Things are ok. Could be better. We were due to come in this morning for a cytoxin infusion. Unfortunately, we came in last night because Gary had declined from Friday. Saturday morning I ran him to his regular pediatrician to have them check on this cough we have had for 2 weeks. He has a foul odor to his breath and SEVERE chapped lips. The pediatrician was a waste of time. She was not comfortable treating him. Sunday morning he had a full night sleep and was slow to walk. I didn't like it so I called. They said to come on down. We spent the day in the ER. They did chest xrays and blood work. I was told it was a very good thing I brought him in because his white blood count was HIGH 32,000 which indicates infection somewhere. We are in isolation and he is being treated with a broad spectrum antibiotic. He was not feeling good again this morning but is seems to be perking up through the day. Especially now that his Nannie Mimi is here. Nannie Alyssa sent us dinner! Yeah. Hospital cafeteria food, blah. Anyway, they aren't going to run the cytoxin until his white blood count comes back up. Hopefully Wednesday.
So the IV placement is getting tiresome. It has taken at least 4 to 5 times every time and then his veins blow. I spoke to the resident doctor about putting in a central or pik line. Everyone agreed it would be a good idea. It is a surgical procedure where they thread a catheter into a vein that goes to a big. (Something along those lines) Gary's doctor that matters said no to it though. She said she the risk of infection is not worth it. Now that we already have an unknown infection it would not be something she would like to see be done. Not sure what to think. I do respect her opinion though.
Gary's feeding tube is going fine. The xray showed that it had come out a little bit so we had to advance it a bit. He is no where near being cleared to eat. Love to all. I will update more later.