Jenelle Text me a little after 12 noon to hurry to the hospital because Cristian was working too hard to breathe and they didn’t know how long he could keep it up. This was horrible. I was so worried when I was driving to the hospital.
Cristian had many visitors today. My uncle, Pastor Fito and his wife along with another Pastor and his wife came to pray for Cristian. They came from Philadelphia. It took them over five and a half hours to get here. Nothing stopped them. They arrived five minutes before visiting hours were over.
Cristian is off the sedation in order for him to be able to wake up and the doctors can then try to take out the breathing tube so Cristian can start to breathe on his own. The waiting room was packed with Family, Friends and Loved Ones.
Cristian had surgery today. The doctors had trouble with the procedure, the Third Ventriculostomy and had no other choice but to just fix the Shunt. Cristian’s first two surgeries only took approximately one hour.
Today Dr Khakoo called me and said that Cristian’s Port doesn’t seem to be working properly. This is the 2nd time that the port wasn’t working properly and the 3rd time Cristian is getting the same surgery.
Cristian couldn’t go to his Chiropractor or his Reike appointment today. His mother said he had a headache. I called Cherly at Memorial Sloane Kettering and Cherly said she spoke to Jenelle and that Cristian’s headache went away.
Cristian and I had a great day. Cristian’s spirits are good but he isn’t very active. Cristian isn’t walking and isn’t really using his right arm. I am very concerned about this because the operations were supposed to drain the liquids which in turn would stop the pressure and hopefully help Cristian regain usage of his legs and right arm.
I took Cristian to his chiropractor appointment. Cristian really likes Dr Bob a lot. Doctor Bob feels that within 3 weeks we should start seeing some improvement. Afterwards I took Cristian to his Reiki session.
Jenelle met with Dr.Khakoo about the options and Jenelle chose to go with Etoposide and Depacode. The doctors called me to get my consent and i went along with Jenelle’s wishes. I wanted to keep Cristian just on Protocel along with the Chiropractor, Reiki and Ray for one month, without a trial drug.
Dr.Khakoo called us and told us that the Panitumumab trial will no longer be open due to a child having a seizure. The other two options Etoposide,Valproic Acid and Derivatives are available.