Not much has changed in the past few days. Kai still seems pretty stable. The new pain med plan is still working. He is sleeping well, snuggling and spending some time each day alert and awake. His wounds are healing. His hair is growing. He is peeing and pooping and maybe even let out a few little smiles.
After spending a few days asking for vitals I gave up, there is no obvious sign of decline.
Today I have moved on from blood pressure cuffs to brain scans. After spending the day yesterday thinking about it, trying so hard not to say it out loud, during morning rounds today it just came out
‘I know theres no diagnostic reason to do a scan but i’m curious what’s going on in there! Maybe we could get a CT scan???‘
Kai has seemed to spark everyones curiosity. His doctors continued to mention the possibility of a scan all day.
In brain tumor world we rely so much on scans and tests every few month to confirm or deny our suspicions. It’s the only way to know one way or another what is really going on. When you are inpatient, those suspicions and curiosities are satisfied for about a week instead of a month, so we are all getting quite curious!!!
But then what???
What if by some miracle, just like the infection, the hydrocephalus has also cleared?? Or what if it has stayed the same, no worse, but still needs treatment??? Both of these potentials will end in us having to make more decisions… Go home? Surgery? Treatment? Feed?
Or maybe Kai is just super tuff and things are worse but he just still looks so good!
I feel like I have analyzed every angle of this situation. I have fought. I have accepted. I have pushed and been patient. I have been willing to let go for the sake of Kai. But no matter which scenario I surrender to, there is always something more testing me, pushing me, making me question.