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.