Everything is going smoothly. We are in a pre-op holding room.

Yesterday we met with Rachel’s doctors and the anesthesiology department for pre-operative instructions. This included the surgical assistant whose name is … (wait for it) … Dr. Lober.

The surgery is scheduled to start at 10:20, and is expected to take 5-6 hours. After that she will be in ICU for 1-2 days. We expect her to be pretty out of it until Friday. The two risks they discussed were infection and brain bleed, both of which are highly unlikely.

For those of you who have expressed a wish to visit Rachel in the hospital, we will have to take it day by day. It may be best for at least some people to visit once she has returned home. If all goes well, she should be home early next week.

We are driving up late this afternoon to a hotel, so we can avoid a hectic morning tomorrow. We will be meeting up with Rachel’s grandfather, who is flying in today to be with us.

Please know how very grateful we are for all the wonderful gifts and messages of support for our precious daughter!

Rachel went up to Packard today for her lucky-7th MRI. We weren’t sure at first what the reason for this one was, but it turns out that it was to get a very accurate map of where her brain is relative to her head. We knew it was in there somewhere, but now the doctors will know exactly where to find it.

Tomorrow early morning we go in for the pre-op appointments with Dr. Cheshier and the anesthesiologist. Then on Tuesday we will pack, drive up, and check into a hotel for the week. (Well, OK, it’s a motel, but Palo Alto is expensive!)

Thank you everybody for all of your support! Rachel feels your love very much.

We have a date, and the date is good. We wanted the date to be soon (we were really hoping it wouldn’t stretch into January), but we didn’t want it to be right before Christmas (when doctors and staff might be on vacation, or distracted, or impatient).

The date is Wednesday, December 10. Enough time to get ready, but still well before Christmas. It’s a very good date. It’s the date Rachel will start healing.

We also go in early the previous Monday for pre-op appointments with the surgeon and the anesthesiologist.

I can’t thank you all enough for your responses to the blog! I’m sorry if I wasn’t able to write back to all of you, but each and every one of your messages was shared and enjoyed together. Your love and support means the world to all of us! There is no better way for Rachel to go into surgery than surrounded by love.

With all the tests complete, it was time for one last consultation with the doctors. We met today with Dr. Porter (neurologist) and Dr. Cheshier (neurosurgeon), along with a PA and a couple of Cheshier’s baby docs.

Dr. Porter confirmed that the EEG and the fMRI results were very positive for the surgery they want to do. All of the tests have convinced them that Rachel’s right temporal lobe is not helping her. This will allow them to be relatively aggressive in how much tissue they remove, and that will give Rachel a much higher chance of not having seizures any more.

We also learned that she will stay on medication for a long time — at least a year. The shock of surgery, and the resulting scar tissue, can create new seizure-inducing areas. Staying on medication has been shown to reduce the chances of a new seizure area starting up. Once she’s seizure-free for a year, they will wean her off the medication.

We are expecting a call from the hospital this week, offering options for surgery dates.

The last test the doctors wanted to see was a Functional MRI (fMRI). You may have seen this images of the brain, where areas are brightly lit, indicating which parts were active while the patient was thinking or doing some particular task.

Our first attempt at the test didn’t work out. The hospital was full, we waited all day, and finally at 5pm Rachel got in the machine, only to find out that the “Functional” part wasn’t working. It made my mother wonder what the “f” really stood for.

But the staff was really nice, as always. They apologized profusely, gave us gift certificates to the cafe and shop, and kept us informed over the next week as the machine got fixed. Finally Rachel was able to complete the scan, and it was verified that her language capabilities are firmly settled on the left (non-surgical) side of her brain.

The first of the final, let’s-be-absolutely-sure tests was a “Video EEG”. This means that Rachel checks into the hospital, gets wired up with electrodes, gets a video pointed at her 24/7 (except for bathroom trips), and waits to have seizures.

One tricky part: they want a parent there at all times to push a button to time-stamp her seizures. Next tricky part: not all rooms are private rooms; some of them have noisy unhappy children on the other side of a curtain. Third tricky part: the parent’s “bed” is a bench with a cushion and a sheet.

Luckily, Rachel is really good a forcing a seizure when she needs to. She would lie down, get quiet and peaceful, and start to breathe slowly and deeply. She was able to do this twice, and turned the 3-night stay into a 1-night stay.

Still, it did make us nervous about the expected post-surgical WEEK in the hospital.

We can’t exactly complain about it. In fact, we asked for it. Rachel needed yet another MRI, and we had three doctors to meet.  It was another sign of how accommodating Packard is, that they were able work all of this in to one day. But it did make for a very long day.

The biggest thing to come out of the day was that we conveyed our decision to move forward as soon as possible with surgery. Their protocol is that two medications should be shown to have failed. The Keppra was teenage-hormones-times-ten, and still didn’t stop the seizures. The Tripleptal made her sick at high doses, and also didn’t stop them. So it was time to move on.

The doctors wanted two more tests: a 3-day video EEG (to verify that the seizures really do start in the right temporal lobe), and a Functional MRI (to verify that her language memories really are formed on the left side, like most people).

On only the third day of school, Rachel had the scariest seizure of the year. Mainly it scared her friend Sophie, but it scared the rest of us too.

She had gotten permission to go to the rest room from her teacher, and when she hadn’t returned after a few minutes, the teacher sent her friend to check on her. When Sophie pushed the door open, it banged against Rachel, who was lying on the floor. Poor Sophie was afraid she was dead.

It seems that Rachel had a seizure in the bathroom, and uncharacteristically lost her muscle control and fell down. On the way down she must have hit her head and passed out, because she had a nasty bump. It was a scary reminder of all the things Rachel couldn’t do by herself anymore, like walk across streets. And apparently go to the school bathroom.