I was afraid that once we came to the sleep study Kai would ‘sleep like a baby’ but no worries, he did not disapoint.

He hated being hooked up to all the wires, kicked and screamed the whole time. Once the set up was done it took a while for me to get him to sleep and it didn’t last long.

He woke screaming inconsolably every half hour for the next few hours.  He was so worked up he made himself sick and after waking like this three times the sleep tech called in a neurologist who sent us down to the ER. That was the end of Kais sleep study.

Of course there was not much the ER could do so we were admitted to our usual floor ( neuro-oncology) at 4am. This morning the docs came and told us they think he’s looking ok and that they just want to keep him here for observation until his G-tube surgery on Monday.

Hopefully we wont have to stay all week. We are hoping to get out in time to spend some time down the cape with the family. It would be nice to at least do a few fun things outside the hospital before summer is over!