Today was busy and Jacob was forced to be awake for pretty much the whole day.  I'm thinking maybe he will actually sleep tonight for the first time in a way long time.  Normally, he's awake all night long and sleeps all day.  First thing this morning, the "Behavioral Health" specialist (fancy word for the psychologist) came to visit us.  The nurse had already woke him up a few times to access his line for labs and give him medicines so Jacob was already frustrated by then.  He had asked me to not let anyone wake him up again so I stepped outside and met with the psychologist.  She wanted a little "history" on him and discuss any of my concerns. Apparently, they realize how stinkin' hard it is for a teenage boy to be locked up in a little hospital room while people poke at him all day and give him crazy medicines. A lot of kids have a hard time coping. ...go figure. Well, according to the "team", Jacob is doing pretty dang good, all things considered. But, one thing that they'd like to work on is more normal sleep patterns. Sounds like the usual teenage complaint right? I really haven't been too concerned about it, but we'll make an effort to get him turned back around.  Today is going to help with that. And, I think that it will take care of itself when we get home.

So, Jacob's eyes still have me worried.  His headaches are much better and pretty much gone away since they did the LP (back poke) and drained some of the extra spinal fluid to relieve pressure.  He's also been taking Topomax, which is a medicine to treat migraines.  We are happy that the headaches are gone, but his vision trouble really hasn't changed.  He still has blind spots in both eyes and that is what worries me.  Opthomology came to look at him again last night and said the optic nerves are still swollen and even a little worse than they were the last time he checked. He decided to send Jacob to the Neuro-Opthomologist for some more testing and imaging.  Sooo...from 1:00 'till 4:00 today, we were at the Moran Eye Center doing vision testing, visual field testing and imaging of his retina & optic nerves.  They changed his medication to another type that does a better job at actually reducing the pressure rather than just treating the symptoms.   After the Neuro-Opthomologist talked to Dr. Barnette, he came by our room to let us know that from what she could see, they felt his vision would improve eventually as he finished treatment.  She hopes to see some improvement with this new medication within a matter of a few days.

Because of all the hype about his eyes and the increased pressure, the Docs ordered another MRI to look more closely at the optic nerves and his spine.  They said to truly evaluate and rule out some causes for the increased pressure, they have to look at the entire central nervous system and that, of course, includes the spine and the eyes...not just the brain.  So, after we got back from the Eye Center, as soon as Jacob was comfortable again and drifting off to sleep, we were off to the MRI room for more imaging.   They did half of the test tonight and they'll do the rest in the morning because it would have taken 2 hours to get it all done and Jacob was just too tired to do all that at once.

The rest of the schedule for tomorrow is to have Jacob's central Broviac line replaced in the afternoon.  He will go to surgery at 5:30pm and we'll probably spend one more night here after that just to watch him after the procedure since it will be evening by then anyway.  We should be home by Thursday morning...Yay!!!

Oh, and guess what?? Jacob's ANC is 700 today!!! Wahooo!  Way to go Jacob :)