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.