TINY HOPE FOR TOMORROW

Today was a pretty typical ICU day. I woke up and needed the bathroom, but it was shift change for the nurses, so noone can leave their rooms. You toss and turn waiting for the day shift to start, so you can walk through the whole ICU in order to get to the only bathroom there is on the floor. Then it's time for a cup of coffee, and my typical ICU breakfast - graham crackers and peanut butter. I am not even sure why I started to eat them there, but it's now part of the ICU routine - sitting on the couch at the end of the hall (the only place you can eat in the ICU), watching the mountain view, and thinking about the day ahead of you or if there is too much going on in there, no thoughts. Your brain gets sort of blank, only feeling the thick peanut butter against your tongue. Reflecting over all the kids in here, most of them intubated and really sick. Thankful that we're not dealing with a breathing tube and lots of lines this time around.
We have seen no more oculogyrical crises today, so that's good news. Jacob did have a prolonged petit mal seizure this morning, which was concerning to everyone since he's on constant valium. The ICU drill started - increasing Versed, talk about an EEG, med changes - everybody trying to be as proactive as possible. In those situations, it's great to have Dr. C in the background. She made it very clear that we're not in the ICU to "manage" seizures, but to stop the neurological spells. Managing seizures we do at home every day. Back to the original plan.
Jacob has had a so, so day. He was not as alert, not as smiley, but the Versed is off as of tonight. Dr. C wants us home tomorrow. We're hoping that Jacob agrees, and has a better day.
Dr. C called me tonight. They do check the level of one of his seizure meds in his blood from time to time. Apparently the level is higher than ever. You and me would be in a coma if we had that level in our blood. That explains Jacob's early naps lately, it simply makes him too sleepy. I am so happy we caught it, and can adjust it down. Whew!
Tonight, I am hoping the boss decides to go home tomorrow!
THANKS everyone for your love and support! It's great to know we're never alone.
Love, Maria.