Thursday, July 6, 2017

Enjoying the Journey....

Since trips to the doctor are an inevitible part of our lives, we try to keep it interesting when possible. The quarterly trip fell near to Independence day, and the annual picnic and parade with the family, so I scheduled off for the 5th as well as the 6th and took a three day "weekend" in the middle of the week. 

The picnic and parade in Glenside were amazing, as always.  Bolivian dancers and wine.  Who could ask for more?

The next day we took my neice back to The Pratt Institute in Brooklyn.  Famous for art and architecture, it has some very interesting art installations.  This one was apparently by Wile E. Coyote.

My neice's school ID entitled her to two free passes at the Brooklyn Botanic Gardens, so we went. They were having difficulty with their credit card reader, so they let the rest of us in for free as well!  


We returned to Philly to enjoy dinner and a campfire with Uncle Ricky.  He'd never had a s'more, and we had to teach him what to do with the marshmallows.....

Closer, dude.

Today we went to CHOP in the early AM. I was a bad mommy and completely forgot to have any blood work done, so we'll have it done on Saturday.  We DID have labs done locally six weeks ago, so we thought we'd talk about that, but for some reason THOSE had never arrived at CHOP, so they are going to track those down and call us later.  She is otherwise doing well.

After CHOP, we had several hours to kill before we had to leave for Nemours.  I had randomly picked up $2 off coupons for the Liberty Museum (never heard of it) in the Philadelphia Historic District, so I looked it up online and we decided to go.  We walk half a mile to the subway, take the train for 10 minutes and, voila, we are there.  $2 off the price of admission meant that our total charge (for BOTH of us) was $5, the best deal ever no matter how good or bad the place might be, but I have to say it was a completely wonderful little museum.  It was themed around the concept that individuals are what make liberty possible.  There was a movie about the Congressional Medal of Honor, areas dedicated to women's rights, important religious figures, Nobel prize winners and ordinary people of extraordinary courage (individuals who hid Jewish families during the Holocaust, for example).  The displays were interactive and gripping.  They used original art and humor in many ways throughout to promote personal responsibility and peace:

"Truce: Rock, Scissors, Paper"

Lunch at The Bourse, a carriage ride through history, train/walk back to CHOP, and now we are at Nemours waiting for doctor #2.  After this we drive home, and we'll have earned our dinner at Perkins since we hit 10,000 steps on our FitBits a while ago.


Saturday, June 24, 2017

Mourning With Those Who Mourn.....

At the very end of the year last year Citygirl's hubby lost his grandmother. She was at their wedding, and they won the "Longest Married Couple" dance quite proudly. This loss has been devastating to their family, the more so because it occurred a long way from the family home. So this week, almost six months later, a formal funeral was held in their hometown. Hubby and I decided to come out to New Hampshire to celebrate her life with them.

A close as we are to New England, neither of us had ever been through Vermont or New Hampshire. The drive was absolutely breathtaking and was only about five hours long. We saw dozens of intriguing places we would love to have spent hours exploring!

We arrived in time for the service. Babygirl and Hubby had never seen a Catholic funeral, so the up-and-down kneeling was new to them, as well as the incense and the music. Their cantor had the voice of an angel: "An He will raise you up on eagles' wings, bear you on the breath of dawn; make you to shine like the the sun, and hold you in the palm of His hand." Goosebumps.

At the graveside, her children told stories of the kind of woman she was, and read poems she had written. Her grandchildren grieved.  And I mourned with them, remembering afresh the loss of my own mother and grandmother.

This is, I am sure, the purpose of a funeral.  It gives families a place to put their grief:  A place to remember, to share, to mourn in solidarity with each other and with friends.  A place to laugh over happy memories and cry for the loss of them:  A place to let go.

The next day we joined the family for a "Nana" tradition:  A game of mini golf with all of the grandchildren.  It was silly, sunny, happy, and rediculous - perhaps the best sort of memorial a grandmother could ask for.


Monday, May 29, 2017

Surviving the Bug....

I've been a bit under the weather this week.  I tend to be pretty tough from an immune standpoint, but this past year has hit me with more than a few bugs.  Not surprising, really:  It's a well-known fact that having people you love die has a negative impact on your immune system for a year or so, and I've been stacking up losses left and right.

That being said, it is extremely rare for anything to hit my GI system.  Even my migraines tend to leave my gut alone.  But this....THING...that Squeaker brought home from school..... Dang.

I had an eye exam Thursday morning.  They tend to trigger migraines, so I really tend to put them off.  This one was more than a year overdue, but everything was good, no change in prescription, all is well, except that two hours later when I went to work I looked like some sort of crazed junky with my right eye about normal and my left fully dialated (which, by-the-by, stayed that way for about another four hours).

So when I started feeling anxious and queasy in the mid-afternoon, I thought for sure I was going to be hit with a migraine.  In fact, my last patient of the day was being seen for migraines, and I joked with her about not worrying if I suddenly had to leave to puke.  She laughed - we migraine people find that sort of thing funny in a sad sort of way.

Once she was done, I found I was totallly unable to finish any more computer work.  I shut down and went home.

On my schedule for Friday morning were four house calls with a resident.


By morning I had gotten rid of Thursday's lunch, breakfast, rehydration attempts, and, I am pretty sure, Wednesday's dinner as well.  I actually didn't feel TOO horrible, so when the resident arrived at my house, we headed out.  First patient?  No problem. Second?  Not bad but I handed off the keys and had her drive after that and let my manager know I was a no-go for afternoon clinic.  Third?  I think I was okay, but my Tylenol had worn off, everything hurt and I was grateful for a sensible second set of eyes.  Fourth?  Well, I perked up a bit and made it through but was grateful indeed to escape in the end.

Last night was the first time I ate a solid meal since.

I'm the last to have it.  Squeaker gave it to his mom, and they were both ill for two days and recovering for one.  Babygirl had it, ill for two days and recovering for three or four.  Me?  Ill for 12 hours and recovering for 2 days.  Nasty sucker.  Hubby's in the recovery phase now and he's been the least sick.

Why. Does. Sickness. Come. On. Weekends?

If this weren't a holiday I'd be going back to work today, dammit.


Sunday, April 23, 2017

This Month's Disaster.....

We all know that Larry has a....delicate gut.  Our experience with last years' 4th of July fireworks aftermath (Sure Fire Paint Remover...) was just one example:  It took two weeks to get his tummy settled.  He can't eat people food, and we have to be careful not to switch up his dog food either.  And he's REALLY not the guy you want on a long road trip. So when he stopped eating for a day early last week, we didn't really think too much of it.

The second day, he ate some.  And then he didn't.  And then a little, and then...not.  And then came the poops.  We came home to a house that smelled like a cross between dog doodoo and death. We spent some time trying to imagine WHAT he could have gotten into and came up with nothing. He's either in the house or on a leash all the time.  The second day of this horror, he hit a bathmat.  I rinsed this out in the toilet and realized that I was seeing a LOT of blood.

Needless to say this was on a Friday evening.  Our vet has no weekend hours.  Over Friday night to Saturday he began throwing up as well, and by Saturday morning it was clear that he wouldn't make it to Monday without some professional help.

What is it with kids and dogs?  Do they all absolutely know for SURE when the doc's/vet's office closes??

There's a lovely animal walk-in not far from here.  When Simon had a tummy bug a couple of years ago they fixed him up, but they made it clear then that he was at the outer edges of what they could do on site there.  Larry was clearly a few steps over that line, so I called the Vet Hospital emergency line and they invited us on over, after informing us that there was a minimum $150 fee for weekend emergencies.

(I checked the place out online before going. Our other option would have been Cornell Vet center, an hour away, and they also ask for you to pay up front.  The reviews were either "They did a great job," or "They were great but expensive," or "What kind of bastards won't even care for your dog if you can't pay??" Personally, I understand your pain if your pet is suffering and you can't afford a vet, but dissing someone because you expect them to work for free seems unreasonable to me.)

The initial evaluation was reassuring, but the differential diagnosis somewhat alarming, as I expected.  The tests to rule out the ugly stuff was what set us back the most.  IV fluids, antiemetics, antibiotics were given and he looked like a new man when we walked out the door.  He's a bit tired today still but eating and walking, and no more of the runs.  We have a couple weeks of special diet, medications and probiotics for him. We will see our (much more affordable) regular vet in a couple of weeks for follow up.

Hemorrhagic gastroenteritis.

It usually hits little dogs, and tends to be related more to stress than infection. Untreated, it can be fatal in a matter of days. They asked about stressors, and I really couldn't think of anything in particular.

But as I was walking this morning I pictured Easter from HIS point of view:  Five extremely excited children ramming through the house at high speed screaming about baskets and eggs and CANDY and baskets and EGGS and eight or ten extra adults crammed into his space talking and laughing and eating and maybe some goodies being dropped on the floor for doggie cleanup and.....

Who knows.  He's a good boy.  He's had Thanksgiving and Christmas under his belt already, with the same people and chaos, more or less.  This might have just been one too many.  We might have to make sure he's upstairs and quiet for the next family gathering.

At our house we joke about the $1000-disaster-of-the-month.  This will do for April.


Sunday, April 16, 2017

Odd Things....

Easter Sunday is always wonderful. Crazy busy, but wonderful. Today was blue-sky sunny and 75.  Eggs were hidden outdoors, so the one we inevitably didn't find didn't matter. Dinner was perfected by that one daughter who stepped up and said, "What can I bring?" and doubled down with three choices on the veggies. Dinner is early on Easter, so there is plenty of time to sit, relax, and let the mind wander.

It's been an odd couple of weeks.

Babygirl's recent doctors visits were not bad. Her labs were drawn a week ahead, and she happened to be ill, so we had to redo them because they were a bit off, but the repeats were fine.  Her Botox injections finally appear to be paying off, and she's had more headache-free time than she has in a very, very long time.
Meanwhile, our insurance insists that the last Botox injections were experimental therapy and won't pay for them.  They DID pay for the ones before that, and the ones before THAT, and so on.  In fact, they covered the first two sets without argument and I've had to fight for each one since.  W. T. H.

My thumb has been healing slowly with no recurrence of infection.  My wrist and my shoulder, oddly, still bother me, because I tweaked them all over the place trying not to use my thumb.

I am dealing with a patient in my office who believes he was bitten by a pit viper while visiting Daytona Beach.  Given the nature of his story, I'm guessing that I might be exploring my first involuntary commitment if his leg isn't getting better.

My washer died Thursday. I discovered it when I went to move Thursday's was to the dryer and put in Friday's load.  There was some kind of error code flashing, so I just opted to try to restart it.  It pumped out all the water and then just kept pumping. And pumping. And pumping.  Since this was clearly not helpful, I pulled the plug and waited for the 'door locked' light to fade out.  The door remained locked.  I plugged it back in, hoping it had forgotten whatever it was on about, but NO, the endless pumping resumed.  I unplugged it for several hours.  Rinse. Repeat.  It's stuck on trying to empty when it's already empty, and permanently locked.  This would be less of a problem if nearly every bra I own wasn't in there, sopping wet, and, I imagine, getting fairly nasty.  I'd go shopping for more, but it's Easter Sunday and, ewww, Walmart bras?  Besides....

I found a killer mother-of-the-bride dress yesterday.  Bella is getting married in the fall, and although she didn't stay with us as long as her sister JuJuBee did, she asked me to be Mom for the wedding.  (In other news:  I saw a picture of myself from this morning and I didn't look.....bad.  Sometimes I forget how much weight I've lost.)  So although the dress was reasonably priced, hosting Easter dinner, putting together Easter baskets, and buying a fabulous dress doesn't leave a budget for new lingerie, especially if I need a new washer.  Hopefully our repair guy will be able to liberate them tomorrow and I can used Curlygirl's washer to finish washing them.

We are considering a fence for the yard.  Capone is just that crazy. And the grandkids are just to little to trust with the doors.

It's our second Easter without Mom.  Maybe SHE took the missing egg. It was always her before.


Tuesday, April 4, 2017

Fiscal Year 2016....

I am, as always, behind on paperwork.  Our tax lady doesn't even bother scheduling us until April, and as always I put everything off until I have no choice.  It's a genuine pain in the hiney to do our taxes. Sorting the medical crap alone can take HOURS.'s done.

Historically, our worst year was transplant year, 2012, with a total of $19,157 in out-of-pocket medical expenses (and 14,701 miles traveled for medical purposes!), and our best since then was 2014 with $5,500 out of pocket and 2015 with only 2,261 miles of travel.

2016 had some interesting challenges.

Our insurance has changed the way things are reimbursed and we didn't figure this out until bills started rolling in after Babygirl's February blood tests.  Our home hospital and her new neurology center are "Level One" providers. Our deductible for the family using these providers is $4400/year.  The hospital where Hubby gets his pain management, and Children's Hospital of Philadelphia (where Babygirl gets all of her transplant-related care) are Level Two providers.  Our family deductible there is $8800/year.  Hubby's pain management sends tests to a Level Three lab, which is not covered AT ALL.

Babygirl's first set of blood tests at CHOP in February came to just over $10,000.  We ended up owing about $3500 for those visits (I negotiated $1500 of her neurology visit down to $200, just settled: The insurance said her treatment was "experimental" even though they had paid for the SAME treatment three months earlier) but the rest was lab costs, and I had to set up a payment plan.  I learned that if I had had the labs drawn at home, it would have cost half as much, so all further labs were done here to decrease our portion of the costs.  Hubby's Level Three lab cost is still under appeal.


Pharmacy costs:  $3,415.90.  That includes two $300 co-payments for Botox.

Medical copayments and deductibles: $7,302.

Mileage: 3,040 (worth $.19/mile for tax purposes, $577.60)

Tolls and parking: $157.27

Grand total out-of-pocket:  $11,834.77.


Add an additional pre-tax $215 for our part of health/dental/vision that comes out of my paycheck, sight unseen.

We'll do a bit better this year.  All Babygirl's labs will be drawn locally.  We're considering whether switching Hubby to our hospital's pain management program is reasonable. Babygirl has been taken off of some medications, and there are no copayments for Botox at her new neurologist's. But this is the second year in a row our costs have come up, and with the loss of Hubby's income last year the hit was especially onerous.


Meeting a Donor's Mom....

During my recent hospital stay, the discharge planner asked the usual questions:  Are you safe at home?  Do you have any trouble getting and taking your medications?  Do you have any mobility issues inside your house?  But there were two rather interesting questions.

"If you needed a caretaker, who would that be?"

Well.  When my headaches were kicking my butt, hubby stepped up and did the muscle work: Shopping, cleaning, parenting, whatever I couldn't manage at any given moment.  He's in no shape for that right now.  My response?  "That just can't happen."  She looked a little nonplussed, but I suspected it wasn't the first time she'd heard something similar.  Then:

"Do you have any concerns about how you'll pay for this hospital stay?"

I actually laughed out loud.  She went somewhere beyond nonplussed.

"I have a child who had a kidney transplant five years ago.  Medical expenses are $1000/month line item in our budget. I'm just taking the hit for team this year and meeting our deductible."

Her eyebrows hit her hairline.  So we chatted about the realities of the expenses of it all.  And then we chatted about her reality:  Three years ago, her twenty year old son died and became an organ donor.  She'd not met an organ recipient, although she had letters from some of her son's.  I asked if she had written them, and she said, "I haven't gotten to that place yet."  We talked about Jorge, and his parents, and Babygirl, and suffering.

"I have to look at it this way:  I got to be his mom for 20 years, and it was the most amazing thing that ever happened to me."

I feel the same about each and every one of my kids.  They are, collectively and individually, the best part of my life and heart.  I've never had to say good-bye to any of them, and I hope I never, ever have to.  But if I do, I hope I do it with the grace and courage this woman has.