Overdue Update

Sorry for the long gap.  I didn't realize how much has happened since the last post.  As it turns out, we went home on Tuesday, Oct 27th, a mere 4 days after surgery!  Hard to believe!  But as always when you have to stay in the hospital, it is so much nicer to be back home.  We had Julia sleep in the downstairs bedroom, so she did not have to navigate the stairs.  She was able to walk around okay, but still pretty wobbly.  But the home environment, with familiar food, etc. helped Julia to feel better.  The swelling in her face took several days to settle down - really almost a week to be completely gone.  Her incision looks good, and her hair is growing back quickly, which is hiding the incision.  Since the doctor only cut about a 1" wide path of hair, centered on either side of Julia's incision, she has been able to change the part in her hair, and cover over the doctor's handy work, so it is barely noticeable that she just had brain surgery.  Julia has been brave and just gone out with her new short haircut and no wig, and most people don't even know! 

We have been really shocked and amazed at how well things have gone, and continue to go.  We have not detected any loss of strength or fine motor skills on her left side, no loss of any language skills, either in long-term (Ukrainian and Russian) or short-term (English) abilities.  She still thinks my jokes are not very funny, so that is status quo as well.  We need to work on stamina - Julia can only be up moving around for 1-2 hours, and then she is tired.  We are also still wrestling with headaches.  Some of it is sinus (since the rest of us are battling that, too), but that doesn't explain all of it.  Libby and I both think one of the seizure medicines has been, and continues to cause, headaches.  We are going to see if we can reduce the dosage some.  The ultimate good news is that we are now 18 days without a seizure!!!  We have never come close to going this long without a seizure, so we are definitely plowing new ground.  If we can get the headaches under control, we will truly celebrate!  Well . . . I am already celebrating, but it is hard for Julia to enjoy this stunningly good news when her head hurts all the time.

We are truly amazed and thankful for God's gracious kindness in all of this.  We are exceeding our expectations - God has done "far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."  (Eph 3:20-21)

Sunday curveball

Libby had a great insight yesterday.  Julia drinks tea every morning, but had not had tea for two days. She was probably having a caffeine headache, so we got her a big cup of tea - not to mention the cure -all for all maladies (chocolate) - and in short order her head felt better.  This led to the ability to eat two corndogs for supper.  The night was uneventful, but the new day started early and not in the most pleasant of ways.  There was a little of this, a little of that, etc.  Perhaps in the process of changing from morphine to something less strong, Julia became sick to her stomach, which of course affected her appetite again.  The new medicine also made Julia real itchy, so they gave her benadryl, which put Julia right back to sleep.  Libby needed me for a few things, (probably mostly for emotional support) so after Sunday school, I dashed back up to Birmingham.  The McLures all came to visit, and Libby went to the store to get more things that were needed.  Poor Julia is suffering one of the predictable consequences of the surgery - the right side of her face has ballooned up and is swollen to the point that her right eyes is swollen shut.  No one seems concerned about this and they are all confident it will subside in a few days.  Julia has gotten up and walked in the the hallway a little bit. The big surprise is the doctor said Julia could go home in a day or two!  Of course, this was before she was sick to her stomach.  We'll see.  But all in all, we are progressing forward in pretty good fashion.

The Incision

This is a little gruesome, but here is Julia's incision.  It starts just inside her hairline near her forehead, and makes a big "C" shape and ends just above her ear.  I haven't tried to count the stitches but there are probably 60-70 or so.  Oddly enough, she hasn't complained too much of the incision hurting her.  It is more her forehead and around her eyes that hurts.  She is trying to eat but her stomach is bothering her and her head has been hurting this morning.  Please pray for her during these tough couple of days just after surgery.

Saturday Morning

Libby and I both camped out in the room last night.  It was more or less what we expected, which means we probably slept some, but we also jolted awake about 50 times during the night.  The after effects of the anesthesia have worn off, so Julia is not feeling well today.  Her head hurts and her stomach is unsettled, but she ate a few bites of breakfast and she is sleeping again.  We are hoping to move up to her room later this morning, and get out of ICU.  It sounds like there were other cases that were very serious last night, so the nurses were busy.

All of this happens in the middle of normal life.  It is amazing how things always happen in clumps. Yesterday was Jim's birthday and my little sister Martha's birthday.  Today is our granddaughter's birthday ( Mary Beth's Claire), and it would have been my paternal grandmother's 108th birthday.  Libby is going to run over to the birthday party, and I will stay here with Julia.  Then I go home to take care of the girls and Libby will hold the fort here next week.

Last thoughts of the day

How does one gauge if someone is recovering well from major brain surgery?  We started by checking for feeling in her arms and legs, particularly the left side.  We also wanted to see how her verbal abilities were, by saying a few words.  We have blown past that standard!  Julia has stolen my phone and is talking to her friends, using her left hand to hold the phone.  First one conversation in Ukrainian, and now one in English.  I should have bet the nurse who said she would not be hungry at breakfast time tomorrow.  She was so hungry this evening, Libby had to go out and find some food for her (she ate a half of a grilled cheese sandwich, and has finished off her second cup of sprite).  She has some level of pain from the surgery, but is not really acting like it is that bad.  But I suppose morphine can do that for you.  I tried to take a picture of her, but she fussed at me, so instead I will post a picture of myself.  Yes, believe it not, Libby let me roam around the hospital dressed like this.  It was evening, and I had to run out to the car, and didn't feel like getting dressed again.  Sorry, children, if this overly distresses you.  I will try to get a picture of Julia's incision tomorrow - it is quite impressive!

Surgeon update

The pace of the surgery actually picked up.  Everything is done and Julia is in recovery right now.  Both the neurologist and the surgeon were very pleased with the physical structure of the insula and relative straight-forwardness of this portion of the surgery.  We are all scrambling right now, pulling up drawings of the brain.  Our understanding is the surgeon took out the entire right temporal lobe, which includes the hippocampus and the amygdala.  Wow! We weren't expecting that. They also were able to remove the portion of the insula they were shooting for, with little difficulty.  The surgeon said a blood vessel got a little spasmy, but they calmed it down and it looked okay.  They also said her initial responses in recovery looked good, with Julia showing movement on both sides of her body.  We will have to check her as she wakes up, to see how her motor skills are, her language skills, then memory, etc.  We also wondered what happens with the hole in her head? (I'm going to have fun with this in the future!). Becca looked up the answer.  According to the internet, if that is credible, the cavity will fill up with spinal fluid and everything will be fine.

While I was typing, they came to get us and move Julia up to ICU for the night.  She looks really good - no swelling in her face.  She is juiced up on morphine right now, so nothing is hurting too bad.

Mid-day update

I wish I had an interesting update for you, but there is not much to report.  One of the nurses brought a small bag of Julia's hair, so it looks like they only cut a small amount again.  The nurse described the incision as a horse shoe shape, and I think they only cut the hair where the actual incision is located.  A few minutes ago, the nurse told us they had pretty much finished with the temporal lobe, so now they are bringing in the microscope to work on the insula.  We have hours more to go.  My sister, Becca, and her step-daughter came over to spend some time with us, so we are hanging out in the hallway waiting room, staring out the windows, watching the clouds.

Haircut

Since Julia is about to get at least part of her hair cut off, we thought it would be better to start the procedure with a little less hair.  Last night, Laura chopped Julia's hair, so now she has a cute little "flapper" hair style going, at least for one day.

Surgery Time

We went last week to meet with the neurologist and surgeon.  I thought this meeting was merely to summarize all of their findings from the SEEG, the meeting with the psychologist, and all the other data they have been collecting over the last year.  That was true, but they had also tentatively scheduled a surgery date for us.  That date is THIS FRIDAY - Oct 23rd!

The SEEG was apparently very successful - it much more precisely located the origin of the seizures. In fact, the combination of the SEEG, with the 24-hour observations, revealed that Julia was actually having two different types of seizures emanating from two different places in her brain. One set of seizure are in the right temporal area, and these tend to be the typical seizure that we witness.  It is a moderately hard seizure and one during which she has several minutes that she cannot remember what has happened.  The other is in the right insular cortex and tends to be a mild seizure (at least by outside appearances), and might look like the beginning of seizure that then fades away.  In fact, the seizure HAS happened - it is just a different type of seizure.

The decision for surgery is very complicated.  Between the neurologist and the surgeon, they are confident of the procedures, impacts, etc. of performing a resection in the temporal lobe of the brain.  They are also beginning to see scarring in the brain, which will cause increasing difficulties if left as is.  These impacts are not static - they will continue to become more pronounced if we do not address them.  The primary function of this portion of the brain is retaining visual memories.  Julia acknowledged she has been having more trouble retaining things she has been studying in school.   The more difficult decision has to do with the insular cortex.  This is a difficult area to work in, with a complex maze of blood vessels running all through it.  Damage to this area during surgery could cause motor skill degradation on her left side.  Some recent surgeries in other countries that showed these complications, showed that physical therapy could help remediate the negative impact over time.  But this is the scary part of the equation.  The dangers are hard to quantify, as well as the chances of success.

Julia is holding up pretty well.  She is increasingly scared, but determined to try and get her seizures taken care of.  The possibility of living life without seizures is one that is so appealing, she is willing to go through the surgery.  Please pray earnestly for Julia and the surgeons this Friday.

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.

Neeni has gone to Heaven

Libby's mom had several good days once she got settled back at home.  A good number of family and friends were able to come by and see her, and kept the household well stocked with food.  One of the neighbors even brought an emergency generator by, so they would not have to worry about losing power again.  Neeni rallied to the point that the hospice nurse declared that she wasn't dying afterall, and they were making plans to pull out.  But this rally was short lived, and by Monday, her energy level was slipping.  On Tuesday evening, I wrote the following email to family and friends:

I wanted to let all of you know that Libby’s mama passed away this evening around 6:45 pm.  It was very good that we were able to get her home to her own bed for the last few days, and she got to see many friends who came by, including her sister from Nashville.  Mrs. Harper was unconscious all day today, but smiled from time to time and acted like she was talking to someone.  She died peacefully and comfortably in her own bed.  Libby and her sister, Laura, enjoyed the last few days with her, telling stories and singing songs and hymns, and reading scripture together.  I was there on Sunday and we had our own little church service, singing “To God be the Glory great things He has done” and “O for a Thousand Tongues to Sing”, and reading 2 Corinthians 2:14 - 5:4 “ . . . what is mortal [has been] swallowed up by life.”, and Psalm 103  “Bless the Lord, O my soul, and all that is within me, bless his holy name! . . .” 

Thank you for your prayers over the last couple of months.  Please continue to pray for Mr. Harper, as he grieves for his wife, and still has to do chemo-therapy for his cancer.

Now back to the main purpose of this blog.  Julia's surgery has been reschedule for August 17th.  She has a pre-op visit on August 13th, which just so happens to be the first day of school.  This will be an interesting school year, to say the least.  Julia is strongly urging me to get her school books, in order that she can start working ahead, so this will be one of my top priorities this week.  One benefit to the chaos of this summer is Mary Beth and Sam now live in Birmingham, which provides us a bed to crash in as needed. I'm sure Libby will find herself "tired" a lot, since that will give her an excuse to go see her grandchildren.

Big Change in Plans

We made it to within 4 days of surgery, and then the wheels fell off.  Libby's mother took a bad turn for the worse, and after a frank conversation with the cardiologist, he made it clear that she was not going to get better and her heart was failing.  But he also said that she could go home if she wanted to, which everyone, including Mrs Harper, preferred. So last night, Neeni got to sleep in her own bed for the first time in two months.  The move here was not without its challenges, however. She was supposed to be moved Thursday night, but bureaucracy got in the way, so both Libby and her sister spent the night at the hospital. This continued on Friday, so it was 3:00 pm before they transported her home. But there was a thunderstorm going on, with lightning everywhere. No sooner did they get Neeni here, and get the oxygen machine set up and running, then the power was knocked out by the storm for two hours. This meant no oxygen, no A/C, no lights, etc. Even before that, while hooking up the machine, they tripped a breaker in the house, so when I arrived, the house was pretty dark, trying to conserve electrical use to make sure the power stays on. Libby has always jokingly called her house "Green Acres" because the power panel is terribly undersized and they have to be careful, as a matter of routine, what electrical devices run at the same time. Hospice is here, to take care of her to end. But the good news is Neeni was thrilled to be in her own bed, with her own remote controls to her own TV. All the traveling back and forth to the hospital is done, and everyone can just be at home.

Not to be overlooked in all of this is the fact that we had to postpone Julia's surgery. This was not an easy decision, at least for me. I was ready to press on, but there were too many loose ends, plus Libby really, really wanted to be with Julia during her surgery. The staff at Children's were amazingly accommodating, so the surgery will be rescheduled. Due to the various doctor's schedules, it won't be until at least the second half of August. So now it looks like Julia will start school, and then have to interrupt it once we get a schedule reestablished. Julia has handled this in a very mature way. She is disappointed in the delay, but understands. As we were counting down the days, she had calmed herself and was mentally ready to go, which I think resulted in her seizures subsiding.  Now we will have to go through the countdown again. Maybe this time she will be able to approach it with a little less apprehension.

A few observations

Some random thoughts as we approach next Monday.

Seizures are banging away.  Julia is having them almost everyday.  Last night, she had one during the last few minutes of the church service, and then had another one on the way home.  Tonight, Julia was cleaning the kitchen and had a pretty hard seizure.  I think the only thing keeping her going right now is the hope that all of this might end soon.  And, since it is necessary for her to have seizures next week, we humorously look at this as good practice for the SEEG.

Part of the pre-op instructions are that Julia has to bathe with Dial soap the night before surgery.  I have had to answer an unreasonable number of questions about Dial soap and why she has to use it.  And not just from Julia.  You would think this was something really difficult!  Kind of like Naaman being told to go wash in the Jordan River.  Then the question was, can she bathe the morning of surgery instead of the night before?  I'm sure that will be okay.

And finally, an interesting insight.  Since Julia is going to have wires sticking out of her head for a few weeks, she has to have shirts that button up, rather than pull over her head.  If she had on a tee shirt, she would be wearing it for the next two weeks!  Unless we cut it off, I suppose.

Libby is still in Mobile taking care of her mother.  She is still wrestling through the emotions of whether her mom will ever get home or not, how to take care of her, how to take care of her dad, and now the added burden of leaving her to come up and take care of Julia.  This has been a difficult week, with her mom riding the rollercoaster of getting better / getting worse.  She and her sister had a good talk with the charge nurse, so they are hoping a few annoying issues can be resolved.

Kate is back in the United States, but not home yet.  She should be home tonight (from London) - I stand corrected.  As I wrote this line, Kate walked through the door.  So she is home safe and sound.

We have a Wig

Julia went to the wig story today, and found a wig she likes very much.  It is close to her hair color, and just a little bit longer than her current length, so the average person would not really notice it is not her hair.  It has lifted a huge weight from her - she instantly became more relaxed, and less worried about the surgery.  So this has been a good thing.  Just 9 days to go - Julia counts down each day, so there is no doubt how long we have to go.

More craziness

We are just counting down the days until we go to Birmingham with Julia.  In the mean time, I have to take my car to the shop because it is burning oil.  And now the upstairs air conditioner decided to stop working.  All the girls will have to sleep downstairs - thank goodness we have a separate air condition for the downstairs.  It looks like Julia will go wig shopping on Saturday, so hopefully we will find a wig she likes.  We heard from Kate today.  It sounds like she is having an interesting and challenging time in London.  She is interacting with Sikhs and Muslims, and learning more about their culture.  Today was a difficult day for Libby.  It started off at 3:00 am with a call from the hospital.  Apparently her mom was upset or confused and wanted to be taken home, which cannot happen just yet.  So Libby's sister went there early in the morning and is still gone at 8:00 pm.  Libby took her dad for his first chemo therapy today, and that seemed to have gone reasonably well.  They are both home for the evening.  This is a time of great stretching for us, so many prayers are appreciated.

Wigs

Today I went and found a wig shop in Montgomery so we can try to get Julia a wig before she goes out in public after her surgery.  She has been "wigging out" over this, so we need to take care of it soon.  I suppose it is the mark of being the father of many girls, that I went into the wig shop, discussed various lengths and colors of hair, checked the texture to make sure it was suitable, and didn't feel odd doing it.  I must be thoroughly inoculated about girl things.  Of course, while this girl thing is going on, I have other girls doing girl things, such as driving the car on a flat tire and ruining a tire and having to get a new one.  It was one of those kinds of days today.  Tomorrow, Libby's dad begins chemo-therapy so we are a bit anxious about that.  Many prayers needed.

Pressure is Building

Something we have always wondered about is if external circumstances affect Julia's seizure "schedule".  It would appear that they can.  Ever since we received the SEEG date, Julia has been more anxious about the surgery.  And her seizures have been more frequent.  She even had 4 in one day this last week.  She also gave me a scare today.  She ordinarily does not try to move when she is having a seizure - she just stays where she is, and after a seizure, will go sit down or lay down.  Today, for some reason, she tried to walk down the steps and stumbled a few times.  It scared me to death.  As soon as I heard the sound, I knew what was going on.  Fortunately, it was only a few stumbles, and not a fall down the stairs.  Then she went to the bathroom and vigorously washed her hands.  It was after this that she was done with the influence of the seizure and "blinked back on".  She needs lots of prayers to try to not worry too much about the surgery (although it is, without a doubt, a scary prospect).  And of course, we want prayers for the procedure, that it goes well, and as accurately as possible, pin-points the location of the seizure initiation point.

We have a Date

We finally have a date for the SEEG - it will be July 20th.  We had hoped this would happen in May, mainly because Julia did some mental math and figured her hair would be growing out by the time school started again.  Now, it is more probable that she will miss the first few days or weeks of school, and likely be quite bald still.  This realization resulted in another round of tears, so it looks like I will be going on a wig hunting expedition with her in the near future.  As it turns out, apparently the surgeon has been traveling around the US, getting more familiar with the procedure, etc.  So hopefully he will be ready to go when we get there.
In the category of "when it rains, it pours" this summer has not unfolded the way we anticipated.  I can't remember the exact order of everything but in mid-May Libby went down to her parents to help them with some doctor's appointments.  Her mom suddenly got very sick with what turned out to be pneumonia.  She checked into the hospital, and that night all of her vital signs tanked.  It was discovered that on top of the emphysema they already knew she had, she also had congestive heart failure.  She has been in ICU and then the rehab center ever since.  Libby has just stayed down there and I have been playing Mr. Mom.  Libby's dad has a reoccurrence of bladder cancer and will start chemo treatment this coming week.  Laura had a sudden, fairly severe allergic reaction to something last week, and while we think we have limited it down to two things, we are not certain yet.  She is taking handfuls of steroids, antihistamines, benadryl, etc.  Virginia has been dancing ballet all summer (this isn't a bad thing, just one more thing).  Kate is getting ready to leave Sunday morning for a week long Missions Trip in London.  Our grandson had a condition in which his body attacked his own platelets, so he had to spend the night in the hospital to get that straightened out.  And Mary Beth and Sam and kids are moving to Birmingham on the 18th of July.  Other than that, all is mostly quiet.  It is Libby's hope and prayer that her mother can make enough progress to go back home, in time for her to go up to Birmingham with Julia.  Or to put it more accurately, Libby is going up to Birmingham with Julia, and we are praying that Libby's mom has made good progress by that time.  Julia is getting very nervous about all of this, and has been having more seizures than normal, so please continue to pray for her.

Meeting the Surgeon

We returned to Children's Hospital on Monday, to meet the surgeon.  Also meeting with us was his dedicated surgery nurse.  The surgeon was very impressive, and showed early on that he was thoroughly familiar with our case, and the timeline so far.  He even apologized that things were taking longer than we initially thought they would or should.  The reason for this has to do with the SEEG procedure we will be using in our case.  We will be the first pediatric SEEG case performed by Children's.  The extra time in getting to this point was due to his coordination with a fellow neurosurgeon at UAB.  This surgeon has done a half dozen procedures on adults, as well as being trained in France on the procedure.  Julia's case became of particular interest for three primary reasons: her seizures have been essentially nonresponsive to the variety and combinations of medications we have tried; her likely initiation point of the seizures is deep in her right frontal lobe, and still not well located; and she is a nearly fully grown "pediatric" case, and so a nice first case for the Children's staff.  This raised a question for us.  Were we going to have a rookie doing our surgery?  So I asked him this question directly.  He told us the UAB surgeon would be the "pilot" and he would be "copiloting".  Part way through this discussion, he called a surgery nurse to come join us.  This particular nurse was from Belarus, and spoke Russian, so she came to make sure Julia understood exactly what was being said.  He went into great detail, which was somewhat unnerving to Julia, about the four areas of concern he had: bleeding, infection, neurological damage, and failure to eliminate the seizures.  He went through all the details and probabilities of success of each area. All of this was pretty overwhelming and frightening.  Julia and I talked tonight, and she understands everything - she is still just scared.  I told her of all the people who ask about her almost every day, and all the people already praying for her.  She is a tough young lady.  There are no hysterics or undue drama.  She is trying to stay calm, but it is hard for her to concentrate on school.  She has even come to terms with being bald and can joke about it.  Now we are just waiting to be schedule for the SEEG procedure.

A Second Journey is about to Begin

I am firing up the blog again, to help keep all of you informed on our next journey.  We would appreciate your prayers as we move forward.  We also hope that what we learn along the way may be of use to others who may also take this journey.

As most of you know, Julia has epilepsy, and has been having seizures about 10-12 times per month on a fairly regular pattern.  She will go a week or more without a seizure, and then have a flurry of seizures packed into one week.  We have tried a variety of combinations of medications and also varied the dosages, but to no avail.  The seizures have kept right on occurring on their regular schedule.  At the same time we have been doing this, we have been going through a series of EEGs, MRIs, PET scans, CT scans, more MRIs, which has gotten us to the point we are at now.

We are headed in the direction of brain surgery to try to find and eliminate the source of the seizures. (That is probably not the correct terminology, but you get the idea.)  On Thursday, March 19th, we made our latest trek up to Children's Hospital in Birmingham.  The most delightful aspect to this trip was we had to be there at 6:30 am, which meant leaving here around 4:30 am, which meant Libby had to get up at 3:00 am.  We had a quick CT scan to start the day, and then an hour long MRI.  Julia had to have anesthesia for the MRI, so she was a bit groggy for a while.  Then we had a lengthy and very informative consultation with the neurologist.  She explained the procedures coming up, and answered all the questions we asked of her.  The next step is a procedure called an SEEG (stereoelectroencephalography).  Rather than trying to explain this, take a look at this web page - it will explain it very well.

http://my.clevelandclinic.org/ccf/media/files/Epilepsy_Center/SEEG%20Fact_Sheet_022210.pdf

This procedure could be scheduled at any time, but they might wait until school is done for the year, so it could be the middle of May.  We will keep you all posted.