So good to have the pain meds working and a calm and comfortable child. Although, calm probably isn't the right word....comatose works better. I'm not sure if he is technically in a coma, but he is low enough that they are doing continuous EEG monitoring to make sure they don't bring him too low.
All of the nurses who have looked at his
trach site today think it is starting to look better. Having him still
and not moving his head around and not being in constant pain and
discomfort seems to be helping him to heal, which is a great thing.
Back to the EEG for a minute: He has electrodes all over his head with a
white fishnet stocking over the top of his head and all of the wires
coming out of the top of his "hat" and it just reminds me of an onion.
What a sweet onion he is. :)
The big news of the day is
radiation. We met with the pediatric oncologist and the radiation
oncologist this morning and are going ahead with arrangements to start
radiation sometime next week. We are still thinking about the idea and
letting it sink in, but from the reports we've read, it seems like it
might be a promising therapy to try. We are in uncharted territory,
prayerfully stumbling through the darkness, hoping we make it down the
The first step is to get a CT Scan this week and the
radiation oncology team will look it over and make a plan on what to
radiate. His disease seems to be fairly diffuse and they can't radiate
his entire body at one time. We all seem to think the disease is doing
the most damage in the abdomen so he will mostly likely undergo
radiation on his entire abdomen for 13 days at a low dose. If it works
and he doesn't have really bad side effects, they will give him a week
or two to recover and then start the process on his chest. The
oncologists all seem to think this is a less risky option than Avastin
at this point and think this is our best next course of action.
understand that radiation is a risky procedure, but the part that scares
me the most is the daily field trip to Abbott to do the procedure.
Every day they will take him down to the basement and through the
tunnels to Abbott, he will undergo his radiation treatment and then come
back through the tunnels to his room. He is much more stable than he
was the day he coded in the MRI room, but field trips still make me
nervous. The doctors all assured me that he will have quite an
entourage the entire time as well. Man, I hope and pray this works. I
really want to bring my baby home again.
Again, we humbly ask and
thank you for your prayers. We are so grateful for your enduring
support and love as we continue on this journey. God Bless you all,