Wednesday, Nov. 19

I am so thankful for all the support we have.  I will continue to update this when I can.  Thank you.
Yesterday was long.  Cody was in a lot of pain and they tried 2x to do the X-rays to calibrate the radiation to his right lung.  We finally decided to go upstairs to get some IV pain med and that would help him relax.  We ate a little in the cafeteria and he was able to get through it in the afternoon.
We made it home in time for the Hospice consult.  It was very hard to talk to your son about a DNR.  That is what they need in order for him to join their program.  We asked questions, cried a lot and he was a trooper.  We did not sign at that point.  It was a lot to take in and I wanted to wait.
About an hour after she left, Cody spiked a fever.  Thank goodness, our NP from the transplant, Julie, gave me her cell number.  I really did not know what to do.  My gut was to go to Sloan but then Cody said he wanted to stay home.  Our lives for the past 6 years have centered around a fever as being an emergency and a need for antibiotics. But things are different now.  Sloan is definitely our comfort area and we feel safe there.  Cody wanted to stay here so that is what we did.  So we called and signed him into Hospice.  The nurse was here in 20 minutes, he needed oxygen and that was delivered in 30 minutes.  We called Sloan and Dr. Wexler was on service so I spoke to him and he said just give Cody Tylenol.  He did not seem to have a fever the rest of the night.  Julie explained how it could be an infection in the fluid but more likely to be from the tumors.  Fevers happen this way.
Sue, our great friend and neighbor was here and came again this morning.  Casey was still here too.  He left this morning and will be back next Thursday as originally planned.  Dad leaves tomorrow.
We are so lucky to be surrounded by so many loving and caring family and friends, near and far.  Thank you.