Update from Mayo, Day 1

Waiting it out in the Luther observation unit last Wednesday with Melanie York.

Just a quick 10 p.m. note from one tired Mama to let everyone know that Amy is doing well and she is still an outpatient! There were a few harried moments when she did not handle anesthesia as expected. Because there are some question marks related to her blood work from last Thursday that need further interpretation from a geneticist, the anesthesiologist was forced to use a different type of anesthesia for Amelia's spinal tap today. (We don't have any further details about the blood tests, or I would share) The anesthesia type she has had in the past for sedated procedures, Propofol, has caused no reaction or prolonged waking time. However, the gas form that was used today put her much too deeply to sleep. They ended up putting a breathing tube in and putting her on a ventilator during the procedure and for a short time afterwards in the recovery room.

Amelia much improved this evening after
the spinal tap returned her brain
pressure to the normal level!

She took quite a while to wake up (though nothing like after the tonsillectomy in October!) and also vomited quite a bit in recovery. By the time they had her "stable enough for me to come back", she was fairly alert and screaming bloody murder for "MAMA!" I don't blame her. It frustrates me that, because of HIPAA, I can't be brought back to a semi-private recovery room, which leaves my daughter caught in the gap in misery, fear and loneliness while they try to stabilize her enough to move her to more private surroundings.

Playing with dollar store umbrellas
in the drizzle after dark tonight.

The spinal tap showed that Amelia's pressure in her skull and spinal column remain high, though not as high today as they were during the peak of her October illness. On October 31, her "opening pressure" was 39 millimeters, and today it was 32. That is still well above the quoted normal, which is 5-15. More tests should help determine whether this is due to infection, an auto-immune problem, or a problem with swelling in the veins of her skull that are responsible for draining excess fluid from the brain and spinal cord. We won't know those answers until Friday at the earliest.

Aaron has returned home to work for a few days, and my mom joined us here in Rochester to help out with the 4 kids, who all accompanied us this trip. We are enjoying wonderful hospitality from a dear friend's parents, and now have a glimpse into all the reasons she is as wonderful as she is! A big thank-you to our dear hosts and our friend for inviting us to call her parents, who opened up their beautifully appointed home just minutes from the hospital!

All of us in our "drizzle parade", a.k.a. cooped-in-the-clinic-all-day-craziness.