It’s 5:30am Friday morning and I know everyone will be waking up soon looking for an update on Kai. I know you all are praying for him and thinking of him and telling your friends about him so they can do the same, he needs it now more than ever.
Yesterday he had an MRI of his abdomen and brain. The results were not good. His tumor is growing, there is a blockage/malfunction in his shunt and he is developing hydrocephalus again. His blood cultures also came back with a second bacteria on top of the bacteria and fungal infections we have already been treating.
Starting Wednesday night he was having a significant amount of breakthrough pain probably caused by the pressure building in his head. His stomach has also been bothering him from all of the harsh antibiotics they have been using to treat the infection. And now that his port Is out they are having to stick him multiples times a day to try to get enough blood for his daily lab work. It has not been an easy few days for the little guys and I just can’t stand to see him in pain anymore.
After many discussions with all of the people who have cared for and grown to love Kai over the past 15 months, we have decided to let him rest, keep him comfortable and hold him close.
No more pokes, no more being woken up every hour for vitals, no more tests.
Late last night we were able to unhook him from most of the wires and we traded his hospital crib for a bed so he will never lay alone again. We slept comfortably most of the night and when he woke this morning I got to look into his eyes, squeeze him tight and ask for more pain meds so he can rest peacefully again.
They warned me that as we increase his meds to manage the pain he will wake less and less, and after he went to sleep last night I was afraid I would never see those big brown eyes again but this mornig I held him. Studied him looked into his eye as he started into mine. I hesitated, for only a second, before calling the nurse for more meds as he began to fuss. I wanted to stair into those eyes forever, but my job now is to make sure those eyes, open or closed, show no pain.