Dr. Hernandez, her epileptologist there, came in around 9am to discuss the day and the plan for returning home. Dr. Hernandez let us know that he would be observing the MRI results and he would do the LP as soon as the MRI is done so that she will still be asleep from the anesthesia.
Dr. Hernandez said that there is still a chance that she will outgrow the seizures based on the fact that they started so early in her infancy and because every test has come back normal.
Bug was prescribed Clobazam by Dr. Hernandez for seizure control. This medicine is not FDA approved (rumor is that the company doesn't want to pay the USA fees to get it approved) so insurance won't cover any of it. It's not too bad, about $20 a month plus shipping and handling. We can order 3 months at a time to save on S&H.
Shortly after he left Maria, an EEG tech, came in and took the EEG leads off Rayleigh's head and then Michael and I took her in the bathroom and washed her hair because it was all ucky from the oil used to get the glue off.
She was so happy to have her head free!
Then we just enjoyed a little bit of time together before they came in to take us all downstairs to start the anesthesia for the MRI and LP. We went into this small wing of the hospital that was similar to the back of a doctor's clinic with a nurses station and small rooms off a hallway.
We went into one of the small rooms and laid Bug on the bed and they brought her a warm blanket to help her sleep. They asked the usual questions, had us sign a few papers and then Rayleigh and I went into a different small room while Michael had to go wait in the main waiting room of that wing.
They laid Rayleigh on a new bed and had me hold her arm down while they started a new IV (previous one moved or closed up) and then they put a small breathing mask on her face and had me sing to her while she drifted off mid-cry. The room smelled of bananas and tears starting flowing down my eyes. Those are the things I remember most of that event. Brave little Rayleigh doing so many things that most kids never have to go through in their lifetime at 7 months old.
Michael and I were sent back up to our rooms and were told that it would be a few hours before we would see Bug again because after her MRI and LP they keep the babies in a recovery room.
A nurse came in and said that they were bringing Rayleigh up right then and Michael and I sprang to our feet and waited anxiously to see our baby girl. The nurse from anesthesia said Rayleigh did wonderful and told us that she'd probably start waking up in about an hour but that she needed to lay flat on her back for at least another 2 hours because of the LP.
Rayleigh rooted around a little bit an hour or so later but was still drowsy and pretty much asleep. She really needed the rest though, the previous days were hard on her.
When she finally woke up for good she took 2 ounces of Pedialyte and they brought in the discharge papers and then she drank 2 ounces of milk and we loaded the car and said goodbye to all the friends we made at Cook Children's Hospital.
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