Picture

Holes in the Head

Julia said I could share this picture with you.  This is where all the electrodes were placed into her brain.  There are a few more places in the part of her hair, and just above her ear.  We were very pleasantly surprised that they only cut a small amount of hair, so you can hardly tell it was cut at all.  Each of the entry points has one stitch in it.  They are still a bit sore, and somewhat itchy, but everything is healing up well so far.  Julia took her first shower in quite a while tonight, and bravely got her hair wet.  I did not hear her yelling in the shower, so she must have managed it okay.  We are now going to wait several week and let her brain heal, and go to a follow up appointment in the middle of September.  I don't completely understand the next step we will be doing, but I think Julia will be meeting with a particular kind of psychologist who will be trying to determine how exactly Julia stores memories, how she retrieves memories, and try to determine what areas of her hippocampus are more dominant than others.  Ultimately, we are trying to determine if her seizure location is in a dominant area or not.  This should be very interesting.
(I am having trouble attaching a picture.  I will keep trying . . . )

Back home again

Wednesday turned into quite a whirlwind of a day.  Julia was scheduled to have her electrodes removed first thing in the morning, and even though Libby said she did not need me to come up, she sounded like she really wanted someone to hold her hand, and who else is better suited to that job than me?  So I got up early and hit the road a little before 6:00 am.  I thought this would get me into Birmingham before traffic got too heavy.  But I was wrong.  Between road construction about 25 miles from B'ham, and then normal traffic, it took nearly 2 hours to get to the hospital.  It turns out I arrived just as the surgery team was talking to Julia and Libby, about 5 minutes before they took her in, so I got there right in time.  Everything went smoothly, all the electrodes came out, and each of the holes through her skin have a single stitch in them, so she has lots of little puckers on that side of her head.  Her head was sore, and hurt some, but overall everything was fine.  She even was able to eat soon afterwards.  She took a few naps to get over the anesthesia.  We were debating on whether or not to go home Wednesday, which seemed pretty quick to me, or wait until Thursday.  We were leaning strongly toward Thursday, and since I needed to get back to pick up Virginia from ballet and get her to choir practice, I left at about 3:15 pm.  I just missed seeing my first college roommate's wife, who came by to visit.  Rats!  The most thrilling part of my ride home was stopping at Sam's in B'ham and getting gas for $1.98 a gallon.  As soon as I got home, Kate told me that Libby had called and they were coming home on Wednesday.  That was a change in plans!  But I had no time to call and find out what was up.  Off to get Virginia, then choir practice, by the store to get milk, and home around 7:30 pm, in time to get a text from Libby: the car battery was dead and the car would not start.  Apparently the little nurse's aid person, who wheeled Julia out to the parking garage, dumped them out, and was leaving.  Libby asked her to speak to the security people and ask them to send help.  But no help came.  So Libby had to leave Julia (in her pink bathrobe) waiting in the garage, walk back into the hospital, and look for security herself.  But they were all missing.  Fortunately, the people at the help desk knew who to call, and got someone there to jump the car.  On the way out, the parking ticket decided not to honor the validation stamp, so she had to pay $25 to get out of car prison.  Then Libby turned the wrong way and got turned around in B'ham after dark.  This about put Libby over the edge.  She called me up, and I talked her out of her lostness, and headed in the right direction.  Just before 10:00 pm, Libby and Julia arrived home.  But wait - there's more!  The doctors put Julia on some temporary medication until her seizure medicine gets back up to proper levels in her bloodstream.  They, of course, did not actually give us any medication - just a prescription that had to be filled that night.  So I went out to find an all-night pharmacy.  They were a little backed up, so I went home, tucked Libby into bed to fall asleep to the peaceful tones of Perry Mason on the TV, back to the pharmacy around 11:30 pm to get the medicine, woke up Julia to give it to her, and finally to bed.  And there you have it - just another ordinary day for this summer.

More Information

Julia had a few more spontaneous seizures, and the doctors did some more mapping procedure, so they are now satisfied they have collected enough information.  The SEEG has done what everyone had hoped for - it has provided a more precise location of the initiation point of the seizures.  But in doing this, we have discovered that rather than starting in the front, right temporal lobe, a relatively benign section of the brain (if it is possible to characterize a part of the brain that way!), the seizures are starting in the hippocampus, which is an extremely important area of the brain.  This location is where long term memories are stored, as well as the ability to record new long term memories, and your ability to be spatially aware.  So we are going to have to go through one or two more steps before surgery.  The next step will apparently be an effort to determine to what extent the seizing part of the brain is active or dominant in these particular functions.  If other parts of the hippocampus are dominant, that would be better.  If our part of the hippocampus is dominant, we will have to make some very careful decisions.  At this point, we really don't know, so we have more steps to go through and much more prayer to bring before our Father.

We have learned that based on the good results of our SEEG procedure, another child has already received the same procedure.  It seems everyone here is very excited about the possibilities of having another extremely useful tool in the toolkit to help children with similar issues.

Making Progress

The tempo has picked up the last two days.  It appears the sleep deprivation, combined with all the medications finally being washed out of her system, caused a flurry of seizures on Sunday afternoon.  Julia had something like 4-5 seizures in the space of a couple of hours.  So they gave her some Valium to calm her brain down.  Julia was allowed to have a normal amount of sleep Sunday night, but she still had a seizure, so we have now had a substantial number of seizures recorded.  They started doing the "mapping" procedure today, which is where they use the electrodes to stimulate the brain.  We are not sure what data they have gotten from this, and they will repeat this procedure some more tomorrow.  But Julia (and Libby) will get to sleep again tonight.  Libby and Julia both had friends come by to visit in the last couple of days, so that has been fun.  If things continue as they have the last few days, it is possible Julia and Libby will come home at the end of this week.  We appreciate everyone's prayers as we plow through this phase of Julia's analysis.  Please especially pray for all of the doctors, that they can clearly determine the source of the seizures and be able to plan out the next stage of Julia's treatment.

Finally some success!

Sleep deprivation is starting to have its desired affect.  Julia stayed up to about 2:00 am on Friday night, and just after falling asleep, she had a good, hard seizure.  She called out to me and woke me up, so I was with her during the entire seizure.  Julia had only about 4 hours sleep Friday night.  We did not let her sleep at all Saturday, and I even inflicted upon her the terrible torture of reading her Geometry text to get caught up.  It must not have been too bad, since she finished it and had few questions for me.  Libby started working with her on an English phonics book - that might be enough to cause ME to have a seizure!  But it is very necessary for Julia to learn so she can spell in English.  Libby took over again on Saturday night, keeping Julia from sleeping again.  Julia had another seizure last night, and only had another 4 hours of sleep, so she is getting pretty fatigued.  We will try to keep her awake again today, so we can try to get a third seizure tonight.  If the neurologist is satisfied with those 3, they will then start a procedure in which they stimulate the brain and try to cause seizures "artificially", to help them hone in on the exact spot.  Kate, Laura and Virginia came up on Saturday afternoon to visit for a few hours.  That was an awful lot of girls in one little hospital room.  They had a challenge getting to Birmingham - they hit a rain storm so intense, it essentially stopped traffic on I-65 for about a half hour.  Eventually it passed, and they got moving again.

Within the Children's/UAB complex, there are all sorts of visually interesting things to distract the children from their illnesses.  I like this sculpture that is located between Children's and the UAB food court.

Waiting and waiting

It seems crazy to pray backwards from what we have been praying for the last two years, but we really need Julia's seizures to start up again.  She has now gone about a full week without a seizure!  She has not had any seizure medicine since Monday, and we are starting to sleep deprive her to see if that helps.  She got 5 hours sleep last night, and we are shooting for 4 hours tonight.  I (Andy) came back up to the hospital today, so Libby could have a break.  She has gone to Mary Beth's house to sleep in a real bed tonight, and get away from the noise and claustrophobia of the hospital room.

As you can see, Julia is able to get out of bed and walk around a little bit.  All the wires to her head are attached to the black bag she is carrying, and she has tubes connected to her legs to help her circulation while she is laying down all the time.  She is off of IVs right now, so we don't have to mess with those connections.  It appears the hospital IS starting to affect her fashion sense, however!

Now the waiting begins

After all the excitement of the surgery, now comes the slow, boring waiting.  And not waiting for anything fun - just waiting for seizures to start.  Julia's seizures have a natural rhythm to them, and we knew we were in one of her lull periods, so the doctors are trying to stir up her system by removing all of her anti-seizure medicine and by sleep depriving her.  Unfortunately, this will probably result in Libby being sleep-deprived as well.  If this were a baseball game, we would be watching a no-hitter right now, with just zeros up on the scoreboard.  No seizures Monday, Tuesday or Wednesday.  So we are hoping things get going today.

One of the emotions a bit odd during all of this, is the feeling of excitement.  There is, of course, the anxiousness of messing around with someone's brain, but the potential for Children's Hospital to add an important diagnostic tool to their repertoire has everyone fired up.  When we met in pre-op, you could sense just how excited the surgeon was, and all of the staff have been very interested in every aspect of this procedure.  There are even a couple of children you are tentatively scheduled to have the same procedure, pending the outcome of Julia.  It really opens up a whole new ability to see deeper seizures, or seizures that previously were difficult to pinpoint.  For me, being around a group of people who are so intent on finding better ways to help children overcome some very debilitating illnesses has been quite thrilling.  You don't really want your child to be the guinea pig if you can help it - on the other hand, she is the first person Children's Hospital in Birmingham has performed this surgery on, and they are paying very close attention to her.

Just because I have nothing better to post, this is the view out Julia's window.  Right in the center, very small, is the Vulcan.  Also, in the foreground, you can see the helicopter pad on the roof of an adjacent building.

The day after

It has been a busy day today.  Julia spent the night in ICU, which is an environment designed to insure that you will not get any sleep.  With the machines buzzing, beeping, gonging, etc., it was not very restful.  But through all of that, Julia is steadily feeling better.  She is drinking well, and starting to eat again.  She even laughs now and then at my attempts at humor.  The doctors and nurses have all come by to check on her and make sure she is doing well.  I particularly enjoyed the bedside manner of the neurologist, not just with Julia, but especially with Libby.  Libby was worried about an increasing number of things, and fretting, and concerned . . .  The doctor just walked over to Libby and smiled and hugged her - she understood that Libby was worried, and simply assured her it would be okay.  We went on an exploratory mission to find food in the hospital complex.  We hit the mother-load over in UAB! What a nice array of choices of food and drinks.  I think this will be Libby's main target for food.  The cafateria/food court is really 2 or 3 buildings away, but everything is connected on the second floor with bridges that span the roads below, so you can get there without having to go outside and fighting traffic.

Julia might punch me for including this picture, but it is too good to resist.  This is shortly after getting to ICU, and she did not feel real good at the time.  She has a bunch of wires coming out of her head, which are wrapped up in a white "sock".  It looks like an elephant's trunk coming out of the top of her head.

Picture from yesterday

Post-op

It is just now starting to hit me that I have spent the day in the hospital while my daughter had brain surgery.  It's not every day that one can say that (thankfully).  This turned out to be a fairly lengthy procedure.  They took Julia just after 10:00 am, put her under, put in her IVs, then did some precise marking on her head and I think they mounted the frame onto her head.  Then they took her down for a CT scan, so they knew exactly where the frame was mounted with relation to her skull.  Back to the operating room.  Julia had a robot attached to the frame to precisely guide the drill to the correct locations.  The first couple of holes took 20 minutes each, but they got faster as they all got comfortable with the procedure, and the time per hole dropped to under 10 minutes.  It was somewhere around 4:30 to 5:00 pm before they were done.  Then they took her down again, for another CT, to check the placement of the electrodes and check for bleeding, or any other issues.  The doctor told us there were as many as 20-25 people participating in this procedure in some way or another.  He was very pleased with the outcome and cooperation of everyone.  Julia will spend the night in ICU, and she has all sorts of wires attached to her to monitor her condition, including having a brain scan monitor attached to all of those 13 new leads planted in her brain.  Here is a picture of what they are seeing.

Surgery Day

It is finally surgery day.  Julia has held up very well under the stress of thinking about someone poking around inside her brain.  We stayed with MB and Sam last night, and we all slept reasonably well.  We made it to the hospital right on time, and they starting moving us along right away.  We had a host of medical people come to the pre-op room to check on us answer and any questions we might have.  The surgeon came by, to let us know the background to this procedure.  He, the neurologist and a fellow neuro-surgeon at UAB have been planning this procedure for some time.  All three will be in the operating room.  There will also be represenatives of the electrode company and some other medical equipment company to make sure their stuff is working properly.  Since this is Children's first time doing the SEEG, there is a high degree of interest, so there will be a few other doctors observing.  The surgeon said we should plan on this taking all day, because he intends to be very deliberate and careful.  It might not take that long, but it will not be short, in any case.  They are planning on putting in 13 electrodes, and they will only be cutting Julia's hair on the front right side, so maybe she can do a comb-over and hide it.  About a half hour before showtime, they gave Julia something to drink to help her relax.  In about 15 minutes, it started taking effect, and she was getting real "happy".  Now we are just waiting . . .

Two More Days

It is almost time to go. The nervousness and excitement are both building.  It is hard to know which feeling is more dominant.  We went to Birmingham on Thursday for Julia's pre-op, which was a little bit of paperwork to sign, some instructions on preparing for the surgery, taking blood, etc.  They really, REALLY stressed getting yourself as clean as you can before you even arrive at the hospital.  After the pre-op, we discovered where Mary Beth and Sam live.  They are in a nice neighborhood that is very hilly.  They have some nice neighbors with young kids, so they are already making good friends.  We will go up to Birmingham Sunday afternoon and spend the night with MB, and then showtime at the hospital is 7:15 am on Monday.

Here we go . . .

After months of waiting, we are finally at the starting line.  Actually, we are at two starting lines.  Tomorrow is Julia's first day of school.  She will get exactly two days of school in, before we interrupt this year with her surgeries.  She will start school tomorrow at 8:00 am, and I will remove her from school at 11:00 am and run up to Birmingham for her pre-op meeting.  We have a good list of questions to go through, and I'm sure they will have a host of information (and forms to sign) for us.  We are going to try to have a high-tech meeting.  Libby is down in Grand Bay with her Dad, as he continues his chemo-therapy.  We are going to try to conference call her in to our meetings, so she can participate just as if she were with us.  Hopefully this will work.  This will be Libby's last week with him, since on Monday, Julia will have the SEEG begun and Libby will stay with her the entire time she is in Birmingham.  Julia has all of her school books already, and we are hoping she can keep up while she is in the hospital, but it is likely she will be having an increased frequency and intensity of seizures, which always muddles her cognitive skills, so we will see.  After we are done with the Pre-op work, we hope to go by and see where Sam and MB and kids live now.  We are both excited about the possibilities, and nervous about the surgeries.  We are praying for the miraculous - that Julia can be relieved of the life-long burden of constant seizures.