Here is this afternoon's update...Alex is seeming to do better each day, but we cannot kick this fever! His last temp was 102.7. We will not be allowed to come home until his fever is gone for a few days to be sure we are over the hump.
We repeated a urinalysis and while he is still spilling protein there was a little less. We continue to hope that the protein is strictly because he has been so sick. His Kidney blood work looks fine so we aren't overly concerned about this.
Hematology came by. They are running a number of blood tests now and then will run more blood work before our next transfusion. They can't run some things now because it wouldn't be accurate because we were just transfused. After we get the blood work back they will determine whether we need to follow up with a bone marrow biopsy or not.
The only other change is that the pulmonologist has put Alex on medication for asthma. They are not sure if that is what is causing his oxygen saturation issue and coughing but it is a good bet. The two biggest risk factors for asthma are allergy issues and a mother with asthma so Alex has 2 strikes against him. Since his chest xray looks fine and he doesn't sound awful they don't have another explanation. I have asthma which only effects me when I am sick or exercising and we had already noted that he gets out of breath very quickly when exercising so this is a logical conclusion. Alex was a trooper as usual. Those who have been in a doctor or hospital setting with Alex know he is terrified of masks or anything on his face. His new medicine is an inhaler that he uses with a spacer that ends with a mask on his face. We knew he was going to have a hard time, but he did it!!! Now he just needs to get used to it because we are going to be doing this every day twice a day!
I believe that is all. Tomorrow will be quiet around here. Dr. Koenig is going to take the day off and just check Alex's labs from home.
I will let you know in the morning how our night goes.