April Fools..in December

Agggg! The hospital called this morning all ready for us to be admitted and had his room all ready. As we were getting ready to leave, the neurologist called and said they found a virus, Cytomegalovirus (CMV) in his urine test from last week. CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. It's a member of the herpes virus family (yeah, I raised my eyebrows at that one too, but it's not the same kind). It can become dormant for a while and may reactivate at a later time. They aren't sure if he contracted it when he was born or after that. In infants, 9 out of 10 will have no systems, but 1 may have significant illness involving nervous system damage or developmental disabilities. There is a chance that the virus may be related to his IS. The doctor said CMV can affect the way the brain develops, but they don't know for sure. It might also just be a coincidence. The doctor said there is no way to tell when he got it but they drew more blood today to find out if it's in his bloodstream. If it is, that means the virus is still active and they cannot start the ACTH because the treatment suppresses his immune system and he could get really sick. If it's not in his blood, they will move forward with the ACTH. Unfortunately, it can take a few days to get the results of the blood work back from Mayo. So, once again, we wait. I wish I would have gotten into boxing, because I would love to jump in the ring right now and knock a few people out. This constant change day to day, hour to hour is exhausting and at the end of the day, my baby is still having seizures. I just want someone to DO SOMETHING NOW!