Tuesday, December 1, 2015

General Health Updates.....

Since it's been so long:

Me first:  My blood sugar went nuts earlier in the year with the addition of a newer headache medication.  Getting rid of the medication helped, adding new medication helped more, and adding Maybelle helped most.  I'm doing well on all fronts physically with rare headaches. Emotionally is tougher because:

Hubby:  His back just sucks.  He's in pain all the time, which makes him cranky, which makes me cranky. 

Babygirl:  The kidney is hanging in there.  There was a brief scare with a wildly abnormal level of one of her anti-rejection medications that made us have to run 70 miles one way for a re-draw (and they lost the results so it took a week to get them, so tell me again why we didn't just get it done across the street and wait a week while they sent it out?), but that resolved.  I think I might have had her on the wrong vitamins (seriously, that's all it takes to screw this stuff up).  The headaches were doing pretty well (missing one day of school a week is pretty good) but then she caught a cold and maybe missed a dose of meds and we ran out of some of the right vitamins and then they kicked back in and now she has another cold and now she's had a headache for at least five solid days and I'm waiting to hear from the headache doc.

Mom:  Dementia alternates between 'sucks' and 'entertaining' depending on the topic of conversation, hovering in the 'sucks' direction the majority of the time.  When someone is visiting she 'shows off' by passive-aggressively aggreeing to take her medications and then simply sitting there and not doing it, despite reminders every 5 minutes, for up to over an hour at a stretch until I get ugly and in her face about it, and then she cries.  Same with bathing.  Or she picks things like penises as the topic of dinner conversation.  Or both.  But clearly she is weakening, and she is coughing more, and a couple of times she has said, "I think I am going to die soon."  She's right, but she doesn't remember anything about why. 

Paying off the medical bills every month?  $500. Living in a house where everyone around you is suffering pretty much all of the time and being able to do nothing at all about it?  Priceless. 


Sunday, November 29, 2015

Be Still, My Soul....

Ten weeks is without question the longest time the blog has ever been silent.  It's not because I have had nothing to say, but because everything I've had to say has bottled up in a mass of confusion, internal shouting, and ugliness. 

It's taken a while to get things in my head to quiet down enough to where I don't lose arguments with myself, know what I mean?

It's been a long, tough year, and I've been waiting for any sign, however small, that things could turn for the better.

Three days ago I noticed that Simon, my sweet old dog, was more winded than usual walking.  Then next day he threw up a couple of times.  Then he threw up some more, and by Saturday he was throwing up stuff he hadn't even eaten yet. 

We're not floating in cash right now.  My last annual review resulted in a pay cut (for the fifth consecutive year). I'm sitting on the last $500 of Babygirl's hospital bills from the spring plus a few hundred from my colonoscopy during the summer, and for God alone only knows what reason Hubby's last visit to the endocrinologist appears to not have been covered.  And (in case you hadn't realized it) Christmas IS coming, and I just put on Thanksgiving dinner not once, but twice.  Hiking into a Doggie Walk-In with a desperately ill elderly dog was a recipe for either emotional or financial disaster, if not both.

The vet, thank the Lord, was a practical young woman.  She clearly couldn't say for sure what was wrong with him without testing, but agreed that giving a trial of IV fluids and anti-emetics was a reasonable and cost-effective thing to do, leaving open the option of the million-dollar workup if symptomatic treatment failed.  It cost $134 and two hours of my Saturday.  By this morning Simon was up and running (okay, okay, waddling.  He's never run a day in his life) and is back entirely to normal. 

I paid the vet, Babygirl's docs, my docs, and I'm going to fight the insurance company on Hubby's bill (I always do.  It saves us thousands of dollars every year).  Temporarily, at least, we are at break-even broke, which beats being behind.

And silly as it seems, the goofy snaggle-toothed grin that belongs to Simon is still smiling at me from across the room, and I feel better than I have in months. 


Saturday, September 12, 2015


I met Bobbe in an exercise class for pregnant women.  I'd just moved to a new town and didn't know a soul besides my mom, and it seemed like a good way to meet people I'd have something in common with.  Three of us were due about the same time, and exercised together like graceless dancing elephants until we delivered.  We got together afterwards and compared our babies: Mine was smallest, Karen's was the boy, and Bobbe's?  The likeliest to be able to live up to being named after not one, but two English Queens. 

When the babies were less than two months old, Bobbe and I got bored and took a road trip to Philly to visit my brother and sis-in-law for a weekend.  New moms, we loaded the back of her SUV to the gills with full-size strollers, suitcases full of baby clothes, diaper bags, and in Bobbe's case, an entire bassinette.  Two car seats in the back, and two grown women taking turns sitting back there to keep an eye on the babies, taking breaks every five minutes to nurse one or the other of them: We were utterly ridiculous and had no idea that we didn't need any of that stuff really.  We laughed at ourselves over that trip every time we thought of it for years afterwards.

When the girls were 9 months old Bobbe moved to Tampa.  "Come and visit anytime!," she said, and meant it.  So Tampa became Citygirl's and my winter getaway.  We came every year for a week or two.  I have pictures of Victoria in her naked-except-for-fingerpaint stage.  I have pictures of little girls trampolining.  I have pictures of Citygirl pinwheeling into a pristine backyard pool in the January sun.  I have memories of Bobbe talking her pediatrician into seeing Citygirl for one of her many ear infections.  Of meeting her church friends. Of sitting and talking and talking and talking about nothing and anything and everything on the lanai. Of shopping for real bras together once we were done nursing (I had never had a professional 'fitting' before. Bobbe insisted. She was right - who knew?  Take her advice, ladies - go and let some total stranger measure your boobs.  Your boobs will thank you). 

They would come north in the summer.  We went camping together, drinking Bailey's Irish Cream beside the campfire next to giggling girls cooking marshmallows over the coals (I insisted. To Bobbe's chagrin, Victoria loved it.  I think it cost her a fortune in camping equipment over the years).  We lay on our backs on a thyme-covered hill watching the stars, and stayed there long enough to know it was the earth moving under us and not the stars moving over us. 

One memorable week we traveled to visit, bringing all of Citygirl's siblings, my brother, sis-in-law and their two kids.  I overheard Bobbe say casually to someone on the phone, "Oh, no, not this week.  I have nine houseguest so I don't have any extra room." Whoohoo! I was the one who finally filled her house to CAPACITY!  That was the same week that we went for desert at a local restaurant, only to discover that the President was eating dinner there! The memory of Bobbe's excited thumbs-up dance in the middle of the street when she learned this news still makes me laugh out loud.  Victoria and Citygirl spent an evening stalking former President Bush.  Ask them about how successful two fifteen-year-olds can be at outwitting the Secret Service. 

When the kids got older the visits got less frequent, but it didn't change the fact that Bobbe was one of the best friends I ever had.  Her willingness to go the extra mile, driving me and my Babygirl to a doctor's appointment that was literally a 384 mile round-trip while I did dialysis on Babygirl in the back seat of her car was just one more example.  And we used the time to talk, and talk, and talk about everything and nothing and all the things that cement a friendship between women. 

My brother once said, "I don't 'get' you and Bobbe.  You don't seem to have anything in common."  On the surface of it, I suppose we were very different people.  But our friendship began at a time when our lives had everything in common:  A focus on the love of a tiny little girl.  We had no nearby family, and no friends who wanted to hear us brag about every blink and bowel movement.  And once you bond like a sister, you stay sisters forever.

I miss you to the moon and back, Bobbe.


Tuesday, September 8, 2015

Arriving Late......

It grieves me terribly to admit that I was late to the wedding.  Not late-late - I was in time for the ceremony.  But I was a full hour later than the time Citygirl told me to be there.  And I'll never be able to make that right, really.

But here is how it went:

I had asked a friend of my Mom's to come to the house to help get her ready, and I was to pick her up at 8:30 AM.  The house was packed, or I would have had her spend the night, which she typically does on Fridays anyway.  She doesn't drive and there are no early buses on Saturday, but since I only had that task and getting myself ready it shouldn't really be a problem, right? 

I called her at 8:20 to let her know I was running a little late.  She was running even later. "Could you get me about 10?"  Criminey, TEN?  Well, it is what it is, right?  And it isn't like I'm some kind of makeup freak - I can shower now and then all I'll need to do is slip my dress on. 

Mom had been showered by an aide the day before, and I got her up and tried to get her moving:  Meds, breakfast, coherency.....not going with any speed. 

People came and went needing help with one thing or another.  At some point I sent someone out to the truck with my keys to get something for somebody...it's all a blank. 

Near 10 o'clock, I went to grab my keys and leave, and.... no keys.  No problem, Hubby has keys.  But....No Hubby!  He's gone someplace for God alone only knows what reason, so I backtrack on the keys.... and call my nephew.  "J, what did you do with the keys after you got the stuff from the truck?"  "Ummm....I might have left them IN the truck."

Oh. My. God.  And Hubby has the truck.  And he is not answering his phone.  And it is now AFTER 10 and I am supposed to be home already and dressed and CRAP.   Just as I am about to have a major private meltdown my sister-in-law pulls up to the curb.  My brother had forgotten his computer and he needed it to run the sound for the wedding.  Excellent!  Please please give me a ride to pick up Mom's friend?

No problem.  Except that no one ever warned me that my sis-in-law drives like a Chihuahua on speed.  "The speed limit here is 30.  We don't have time for a ticket, you can't go 50 on a city street and OMG THAT LIGHT WAS RED AND I AM GOING TO DIE BEFORE MY DAUGHTER GETS MARRIED!"

By the time we got back home it was 10:30, the time I was supposed to be at the wedding venue.  Mom still wasn't dressed and her ride was arriving in half an hour, and I wasn't dressed and I still didn't have a ride either. 

At some point you just give up, you know?  I could either rant and rave or I could make my Mom's day pleasant, so I took my time, did her hair, got her dressed and helped her get into the van at 11.  By that time Hubby was back, and I helped him fasten his cummerbund and got into my dress. 

And then there was that one really, really bad moment, when all the stress of the morning hit:  I'd lost a little weight since I bought the dress, and I needed to pin the dress to my bra to cover a small gap.  I looked in the mirror and I just couldn't do it myself, and I started to cry, "I need Bobbe.  I just need Bobbe!"  But she's gone and she won't see my daughter or worse yet HER daughter get married and OhMYGOD Bobbe....

Thank God I'm not a makeup person.

I arrived at the museum at 11:30.  I missed the family portrait time with the photographer, so there will be very few pictures of me in that fabulous dress.  But I arrived in time to help my precious baby with a last-minute wedding-dress wardrobe malfunction that I hope helped her forgive me for adding to her stress on her special day. 


Monday, September 7, 2015


I've been in weddings, as bridesmaid, but the last time was probably close to thirty years ago.  If there was a rehearsal dinner I don't recall, honestly.  What I DO recall about that wedding was rear-ending another car on the way home because I was so sleep-deprived during my pediatrics rotation (but I digress.  No injuries, no car damage, no delay, it was all good, right? Right).

Citygirl's rehearsal dinner was held at the museum where the wedding and reception were held, using the same room Make A Wish used to reveal Babygirls's Paris trip.  Citygirl's minions had made it lovely - flowers, table runners, atmosphere - lovely. There were seats for exactly all those expected.  The museum's courtyard was all set up for the big event, and could be seen from the windows. 

They had a caterer, a local Pakistani restaurant to honor Citygirl's heritage on her dad's side.  Her Auntie in Pakistan had gotten Citygirl's and her Beloved's measurements and had lovely traditional Pakistani clothing made for the event.  The rehearsal went was looking to go well, and then....

People just started to show up.  Those who did had reasons to be there, some of which even had something to do with rehearsing for the wedding, but....suddenly seating was, well, off.  And the caterer somehow forgot he was in America and started running on Pakistani time (I know. I lived there for a while. If an invite said "7 PM" for the love of ALL that is holy do NOT come before 8:30 or your hosts will still be showering and the servants will not know what to do with you!).  The resultant chaos went unnoticed by the majority of the guests.  And who knew my Ex could be so gracious a host?  Kudos to him, and a Boo/Hiss to what was our favorite restaurant!

After the rehearsal dinner there was a cocktail 'hour' (or three) at the hotel where most of the guests were staying.  It was very lively, but I have to say that all I consumed was about 10 glasses of ice water.  It was fun watching the crowd of Citygirl's high school friends act like they've always acted together:  High spirited, happy, and loving.  It was wonderful seeing them blend in with new family and old, welcoming all.  Citygirl and her Beloved have between them a solid base to build on.


Monday, August 31, 2015

The Week Before.....

The week before a massive family event is always complete chaos.  There is a list of things that need to be done, and just about the time you cross one thing off three more things have tacked themselves onto the end of it.

I arrived home from the mission trip tired and grieving.  B's sudden loss was a huge blow to all of us, and there was no time to even consider really processing it.  We had no idea what the final arrangements were going to be.  George's funeral plans hadn't been announced.  My Dad's memorial had been definitively postponed until the after-wedding chaos died down.

Our back entrance, a 10 x 12 shared space for the two apartments in our house, has always been a shambles.  It has no heat, so the genius who ran water out there for washers and dryers before we bought the place cost us plenty in plumbers' visits when pipes froze in the winter because tenants didn't want to pay to keep a space heater running.  Tearing out the plaster and lath and insulating helped keep it warmer but didn't really improve the looks of the room.  So while I was gone, Hubby tore out woodwork and put up beadboard and began the process of making it....pretty.  Citygirl and her beloved did a lot of painting, and one indoor/outdoor carpet later: Voila!  a tolerably good looking entrance! (I still need to paint the door.  Oh, there is still a list, but we promised ourselves we would do NOTHING in August.)

The kitchen backsplash needed to be put up.  I had picked tin ceiling tile (which, these days, is made of plastic and can be cut with a good pair of shears - awesome product, I must say).  With Babygirl's assistance, that project took two full days.  I did, at one point, literally tell my mom to 'SHUT UP!' after she had, for the fifteenth time, advised, "Measure twice, cut once!" and asked, "When are you going to do this on MY side?" again.  She left for her side in a huff.  And then forgot all about it.  Ah, the beauty of dementia. 

I had found some lovely fabric at a garage sale - an immense amount of yardage on the bolt, sold for $1 by a local interior designer.  I made new pillow covers for our very tired living room pillows and a bedspread for the rented guest bed.  I made beds, put out clean towels and washcloths for each room, made sure each room had curtains (Mom has never used the upstairs of her side, so we never needed them!), getting creative with antique lace tablecloths and twine when needed.  I bought fans. We had a professional steam cleaner come in and clean our couches (ahh, no doggy smell) and mom's chairs (cats, she used to smoke, and old lady.  We can't talk about how much better her side smells without being insulting about how bad it used to smell LOL).

On Thursday my sister-in-law and I did a sweep of the house, looking for any construction items that had not been needed, and we loaded up the truck and headed off to all the home improvement stores.  We came back with over $300 in store credit (yeah, I have all the receipts. No, I didn't have them with me.  Did I mention I still have a LIST?) and a lot more room in the basement. On Friday, while the bridesmaids were all off having their nails done, we whipped through the house for a final clean-and-polish, and then she and I went off by ourselves for our own mani/pedi. 

When we came home we tackled our final assignment:  Make pudding shots.  http://www.justapinch.com/recipes/dessert/cookies/adult-pudding-shots-10-assorted.html   These were for the after-reception barbeque, and they were simple, fun, relaxing and giggle-inducing to make.  It was a good thing:  The rehearsal dinner was yet to come.


Sunday, August 30, 2015

WHY did you leave....

In telling people the complicated story of my summer, one of the commonest questions is, "Why on EARTH did you leave town for a week two weeks before Citygirl's wedding?"

The answer is a complex blend of the balance of our lives.  Citygirl's wedding was a high priority, indeed.  I had taken off the entire week before the wedding to help with preparations, and had dedicated every weekend from April through mid-July to readying the house:  Adding a deck, upgrading a kitchen and remodeling a bathroom were all accomplished in that time. 

But Citygirl isn't our only child.  Babygirl still needs raising, and her life, in the past few years, has been a lot different than Citygirl's exuberant high school experience.  I had no problem giving up Beach Week for an event as momentous as a wedding, but the annual mission trip is an opportunity for fellowship and friendship that Babygirl's illness so frequently isolates her from.  To complicate matters (and to add just a TOUCH more stress to an already far too stressful summer) Babygirl's June run to Philly had yielded some nerve-wracking lab reports.  Her neutrophil counts had dropped.  Not into the don't-go-out-in-public-without-a-mask levels, but suddenly and radically lower than they had been.  Low enough, that as they stood, the mission trip was off the table. 


Well, or you could repeat them.  So the Monday before we were to leave, we went to the hospital to visit our favorite phlebotomist, only to be told he no longer worked in the lab.  Crap.  When your kid has ONE vein on the back of her hand, you want someone you know can hit it, right?  We hooked up with a new lady, got the tests and waited.

Wednesday, two days before we had to load up the vans to leave, we got the call.  "Counts are back to normal!  See you in October!" 

So we went to Lincoln County, West Virginia to install a floor on house for a family who'd been living with a dirt floor (and no bathroom, kitchen or indoor plumbing) for six years since a fire gutted their first floor.  We were the final team on the 7-week project, so we did painting, tiling, and laminate floor installation.

On the last day we had a bit of extra time, and the building inspector had said that the family needed to clear the construction trash before they could move in, so I rounded up Babygirl and a girl from another team and we started loading trash in the van to take to our Center's dumpster.  After the second load I realized that we needed to move the bags from the front of the dumpster to the back so that we could REALLY pack it full.  The girl from the other team said, "I ain't gettin' in no dumpster."  Babygirl just laughed at her and said, "I'll do it!" 

(Caveat: Please remember that this was construction trash, not garbage. And the dumpster was dusty, NOT disgusting.  I'm not completely crazy.  I'm NOT.  Stop laughing!  I'd have done it myself except that although I was sure I could get into the dumpster from the back of the van,  I was equally sure I wouldn't be able to get back out.)

Babygirl hopped into the dumpster and shifted about 30 fully-loaded construction-sized trash bags from the front end to the back.  She was able to stand upright under the top of it initially, and was climbing over stacked bags as time progressed.  With each additional load we brought she played dumpster-Tetris and stuffed them from bottom to top, back to front, until we had filled the entire thing completely.  Toward the end, she stumbled and sat down on a bag of trash.  She laughed - she was in the shade of the dumpster lid, there was a breeze, and she said,  "This is the coolest I've been all day - I could sincerely take a nap right here!"

At the end of the day, one of our other teammates incredulously asked her, "You really went dumpster diving?"

"Yup.  Bucket list:  Check!"

Dumpster Diving

OhMyDearLord that kid is funny.  And kind.  Clearly not every kid on this mission trip understood that dumpster diving was part of being a missionary, part of getting a family into a home that, this winter, for the first time in six years, would have a floor, a toilet, and a kitchen sink.

THAT's why I left.


Friday, August 14, 2015


For the last six months our lives have been all about the physical de-crapification of our house.  Buy a shed to store the tools that clutter the yard we are covering with a deck.  Empty the kitchen to put in new cabinets. Ditto the bathroom. Clear every unused room to create a Bed-and-Breakfast atmosphere for the wedding. Clean the spare fridge and get it running. Tent, and then UNtent, the yard.  Party set up, party clean up, and restock the utterly depleted pantry.  Clean the spare fridge and shut it down.  Keep track of the finances of the whole enormous project.

Week after week I've watched appallingly large amounts of yard waste, trash and recycling hit the curb.  We've returned about $100 worth of cans and bottles at a nickel apiece. 

We are finally, for the first time in months, back to transplant-standard clean in every room in the house (our bedroom was the final holdout.  I don't want to talk about it. There cannot possible be that much dog fur loose in the universe).

The de-crapification of my heart and soul may take more time and energy than this.  The overwhelming beauty and joy of a wedding crowned a summer laden with loss and grief deferred.  Sorting through it all, finally feeling it all, and letting the healing start is the work of this last quiet month of summer.


Monday, July 27, 2015

Three AM Friends.....

In our lives we are given only a few friends that we know with 100% certainty that we can pick up the phone at three in the morning for whatever reason, call, and they will be THERE.  Whether it is a shoulder to cry on, someone to go with you to the hospital with an injured child, or help with hiding the bodies (well, theoretically....) there are, perhaps, at any given time in your life only one to three people you could call on and not feel at all bad about it, knowing that they could, in turn, call you.

Last week I while was out of town for our annual mission trip.  My good friend B (we met twenty-six years ago in an exercise class for pregnant women when I was carrying Citygirl) came into town from Florida to help prep for Citygirl's wedding, not realizing that I was gone.  She stopped by the house, ran some errands for Citygirl and made plans to return this week, using the extra time to catch up with her many other local friends. 

Except, she didn't.

Sometime Friday she pulled her car off the road and called 911 for assistance.  We don't know why.  They responded quickly but by the time they arrived it was too late to help her. 

And like that, she is gone.

The police needed someone to identify her, and came looking for me, which was how Citygirl was notified of her death.  Another of her older friends was located for that sad task, sparing Citygirl that grim necessity.  Citygirl sent me a text instructing me to call her when we came into cell phone service range (Central Appalachia is generally not on the grid).

It was a sad ride home.

B was the kind of person who made friends in the grocery line.  She was kind to everyone. She was over the moon about her surprise pregnancy at the age of 42 (her first and only).  She cared for her parents until they died (just a couple of days apart) and came and cried on my  shoulder when they did. She opened her home to international students, friends, family and strangers.  She's the one who drove me to Philly while I did dialysis with Babygirl in the car (Week Twenty-four: More Gratitude....) when she herself had just driven over 1400 miles in the previous few days.  I helped her clean out her aunt's house after her death.  She offered to come and stay here to help if I needed it as my Mom declined.

She always put her whole heart out where it could be seen.  A true-blue three-AM friend. 

There is a new bottle of Irish Mist in my fridge.  I found it yesterday when I was looking for some vodka to mix with lemonade at the end of the day.  She must have dropped it off while she was here, planning to come back for an evening of drinks and stories on our new deck.  I wish I'd been here to have that drink with her. I wish she were still here to have that drink with me.


Tuesday, July 7, 2015

Twelve Hundred Miles......

It's been a long time since I made the Philly trip twice in one week (this time once for doctors' appointments for Babygirl and once for a family party), and I'd forgotten how tiring eight hundred miles of driving in one week can be. 

As I was recovering from the return trip on Sunday, I got a call from my stepmother.  "Your Dad is back in the hospital with pneumonia and he is not doing well at all....."

It took a couple of minutes to determine how bad she really meant he was, and to understand that what she really needed was help in deciding for sure what to do next. 

I called my brother. 

Bless him - despite the fact that we are both desperately busy right now, he with moving into a new home and we with preparing for the rapidly approaching wedding, he agreed to come along and do the driving.

It was after 7 PM when we left, and I fell asleep for over half an hour somewhere near the end of the drive (he actually didn't notice.  He continued to talk and he says I continued to respond.  I'm am quite glad I was not driving), and we arrived after 11. 

In the morning we discussed the situation with our stepmother:  Despite the fact that he was 'doing well' a week ago, 'doing well' was now limited to periods of being alert but disoriented, and being unable to eat solid food due to choking, being unable to hear or see, and of imagining that he was hanging out in Niagara Falls with my brother or that I was working in his nursing home.  On our last visit, less than three months ago, he had begged to get out and asked to die.  Currently he was desperately ill, not responding to antibiotics with another trial of antibiotics being contemplated.  We discussed her spiritual concerns, and her sense of guilt and helplessness in the face of his overwhelming decline.

We went to visit. 

When we arrived, he was unconscious and struggling to breathe.  His temperature was over 104 degrees F and he was under a cooling blanket because he wasn't responding to Tylenol.  He'd been given morphine to ease his breathing. 

We stayed for three hours.  His temperature came down and his breathing improved a little, but he never awoke or responded.  We talked with hospital staff (my brother remembers everybody from 30 years ago when we lived there, and everybody remembers him.  I am far less memorable!).  We shared memories.  We talked quality of life.  We discussed choices.

We gave him permission to stop fighting and let go.  We gave her the same permission and advice.  At this point even more antibiotics probably represent 'extraordinary measures' to keep him alive and he probably wouldn't approve; and in the end, they won't matter anyway.

And we came home.

I won't be able to be there when he dies, and I feel......horrible. 

I did what I know he'd want: I came home to my family and started doing what needed to be done here.  But...I want my Daddy.  I'm almost 60 years old, and I want my Dad.


PS At 5:30 this morning, he went home.

Tuesday, June 30, 2015

"When Do You Not Have to Worry?".....

A few months ago a church friend asked me, "So when do you not have to worry about rejection anymore?"

I told him the stark truth:  "When this kidney dies and she goes back on dialysis.  Then she goes on the transplant list again, and if we're lucky she gets another kidney and we get to start worrying again."

He was stunned, as are most people.  "Transplant" and "Happily Ever After" are not the same thing.

That being said:  We went to Philly for rechecks at nephrology, neurology and gynecology Monday and Tuesday (a massive accomplishment, getting all three in a two-day spread!). 

Gynecology is easy:  Cramps?  Nope.  Good - carry on, no changes, see you next year.

Neurology was a mixed bag:  Yes, we should increase her medication a little more, but we need to clear it with nephrology because it is causing some kidney side effects (increased acid), so we'll get in touch with them and then get in touch with you.  Make an appointment for three months.  (Well, except that if history is any predictor, they'll forget to ask and forget to call; and I've already checked and there are no appointments available on the one day Babygirl doesn't have school near the three month mark unless I speak to the special scheduler, and gee, she wasn't available.  Sadly, it's CHOP Neurology in a nutshell.)

Nephrology was just tough:  Creatinine is 1.3, up again after coming down briefly.  Calcium is up for no good reason (and believe me, there is NEVER a good reason).  Too much acid (neurology's fault, and fixable, increase the bicarbonate).  Neutrophil count abnormally (but not quite critically) low. There will be a team meeting to discuss what to do next. Increasing the mycophenolate is an option that has been being discussed for a long time, but concerns about her neutrophils have been the opposite side of that coin, so it's anybody's guess what's next. The word 'biopsy' came out, but they JUST did one, so I'm not sure what the point of that would be.  They agreed that increasing her neurology medication is not a problem and will call and tell neurology, so I can call and bug them later.

So since the appointments were spread over two days, and the first day ended at noon, we got in the car and drove east for an hour until we ran out of land.  Babygirl has never seen Atlantic City, and since we go to Bethany Beach (I think they have about the world's smallest boardwalk LOL) she's never really seen a Big Boardwalk town.  We walked about three miles of boardwalk, about three miles of sand, visited Ripley's Believe it or Not Museum (hokey but fun, and better than taking a 15 year old into the casinos!) and had dinner on the beach.  It was a nice break for the two of us, even if the news wasn't the greatest.



That moment when...

You are driving and you look ahead and see the kind of cloud coming down that makes you swivel your head in all possible directions to check for tornadoes, even though there isn't a bit of wind.  When, moments later, without transition, you go from dry road to full-bore downpour. 

That moment when...

You are afraid to look away from the road long enough to find the emergency flasher button so you just palm the dash until you hit it.  When you realize that a moment ago there was a truck in front of you, one behind you, and one next to you but you can't SEE any of them.

That moment when...

You can't recall if you are on that section of this highway to hell that has a shoulder or if there is a concrete barrier next to you, and you can't see either one.

That moment when...

You realize you've been saying, "Oh God, oh Jesus, oh God, oh Jesus..." over and over; and it is without a single doubt the sincerest prayer you have offered up since the last time your child was suffering in a hospital bed.

That. Was. My. Day.


Wednesday, June 24, 2015

Unexpected Gains.....

Last night I spent the usual 10 minutes struggling to get my Mom to agree to let me test her blood sugar after dinner so I could give her her insulin.  When she finally agreed, the result was higher than I expected.

"371!  Holy cow, Mom!  What were you eating all day?!?!?"

"371?  That can't be right! Let me look at that!" (She looks at it, the tiny little hand-held screen.)  "There is something wrong with that machine.  Why, that means I've gained over a hundred pounds today!"

Brief pause.

Babygirl and I started laughing so hard our bellies were still sore this morning.  It took WAY over a minute before I could gasp, "MOM!  It's a glucose machine, not a SCALE!"

It took HER way over a minute to register why we were laughing.

Ah, life at Dementia Central.


Friday, June 19, 2015

Gypsy, Farewell......

I've clearly been AWOL for some time!  You can thank Squeaker.  He decided to gently push my laptop off the edge of the table.  The landing wasn't pretty.  The computer is insured but due to a series of errors and travel I haven't got it back yet. 

I went to Walla Walla for Citygirl's graduation from winemaking school (more on that in another post or three or four), leaving here last Wednesday evening and arriving home late on Monday night.  My mom's friend Em came to stay with her while I was gone, helping Hubby keep an eye on her. 

When I came in to say 'hi' to mom, Em pulled me aside.  "Gypsy doesn't look well.  She's been throwing up, and her belly feels a little full." 

Mom has always two cats.  Gypsy was found at a local shelter after the first big flood here in 2006.  She was estimated to be about a year old and had clearly just had kittens, although the kittens were not found with her.   My sister-in-law spotted her, recognizing her for what she was:  A purebred Ragdoll, something my mom has always wanted but couldn't really afford.  They are lovely cats, long-haired, blue-eyed, and similar in coloring to a Siamese; but sweeter in personality, very affectionate.  A couple of years later when my Mom's (then) second cat died, I found Emma on Freecycle.  Emma is orange and white, also long-haired, a clingy, needy little thing perfect for an old lady's lap.

I took a look at Gypsy.  Her belly WAS distended.  I called the vet and made an appointment for yesterday morning.

When I loaded her into the carrier, I noticed how dry her fur looked - not at all her usual shiny, well-groomed self.  I found myself feeling a little desperate - hoping the cat would at least outlive Mom.

The 'patient' ahead of us unexpectedly didn't make it out of the vet's office.  Both the vet and the pet owner were clearly distraught.  I said to the vet as we walked in, "I hope this isn't another one."  She shot me a look, knowing that I am a doctor and wouldn't make such a comment in jest, and said, "It's really too bad I don't drink, when I have days like this."

It turns out that some breeds of cat (Ragdolls and Siamese among them) can develop a form of autoimmune peritonitis.  Gypsy was severely dehydrated, belly distended, and there were swollen glands and a good-sized mass.  "She needs to go to heaven."

Ugh.  We moved to the surgery, and she gave her some ketamine (Gypsy managed to bite her - the only evil temper I've ever seen her display), and a bit later she came back to administer whatever it is they give that finishes the job.

She's not my cat - I could have just left her there, I suppose, but for the sake of my Mom and the love she has borne for her kitties I just couldn't. We owe our pets tremendously for all they give us, and they ask so little in return!  Babygirl and I came home with the empty carrier, and I still haven't told Mom. 

The problem with having dementia is that bad news is intense, horrible, and it makes you cry, and then you can't remember why you are crying and have to ask and be told again like it's the very first time.  I can't imagine that she'll remember.  I guess what I'm hoping is that she just won't notice she's missing, since Emma is always all over her and Gypsy was more of a come-and-go sort of soul anyway. 

Meanwhile I am grieving for her, not because I miss her cat, but because I miss the woman she once was.


Friday, May 29, 2015

Springing an Old Lady.....

Getting an old lady with decent insurance out of a nursing home is about as simple as infiltrating the KGB unnoticed without speaking Russian. She's too confused to be safe, too weak, too....what?  Seriously folks, she's walking, using the potty, and asking for her kitties.  Let her go.

So today, with the help of an understanding doctor (and an agreement to set up a spy cam so I can check on her from afar) I got her sprung.  Here's how it went:

After a week of several phone calls daily the nursing home agreed that she was ready to discharge to Hospice care.  The agreed-upon time was 11 AM.  Hospice would arrive at home at 1 PM.  Yesterday Babygirl and I spent a few hours trying to reconfigure Mom's bedroom (which is also her dining room - she can't climb the stairs to the bedrooms and has had a hospital bed downstairs since she moved in two years ago).  The current arrangement made her walk circles around her dining room table, dragging her oxygen cord with her.  Once it got wrapped around a couple of times she'd forget what to do about it and just take it off.  When she fell, she didn't have her oxygen on for this reason. While I was putting the finishing touches on this project this morning, the nursing home called and asked if I could come in a little early for some paperwork.  Of course. I knew there would be paperwork!

It turns out that the 'paperwork' they needed done was the required stuff that allows them to ADMIT her to the nursing home in the first place.  Somehow, in the three weeks that she's been there, no one asked me to get that little detail taken care of.  So I spent half an hour admitting her to the nursing home, and then went upstairs to do a half-hour's worth of paperwork to get her OUT.  It put us a little behind schedule.

She then got loaded into a medivan and brought home.  Two skinny guys hoisted her up the back stairs in a wheelchair, transferred her to her walker, and in she went to be with her beloved kitties. 

Hospice arrived, right on schedule, and we hit the rough patch I anticipated.  They outlined the purpose of Hospice:  To make her comfortable, but to not do any diagnostic tests or life-prolonging treatments.  "Hey!  Wait a minute!  You make it sound like you expect me to DIE or something!" says Mom. 

"Everybody dies, Mom.  You have at least four different diseases that can't really be treated.  We aren't taking anything away, but we aren't adding anything new because the new stuff would probably kill you faster than the diseases you have.  Besides, Hospice isn't a contract that says you HAVE to die in a certain period - you can take your time about it!"

Only in my family can you say something like that, get a laugh and not get sent straight to Hell.

The winning argument was this one, though:  "I need help to keep you from going back to the nursing home and this is the only way I can get it."  Done. 

So she is settled, I get someone to come in twice a week and shove her in the shower with more help further down the road when we need it, and it's covered by Medicare because it's Hospice.  It's sad that you have to be officially dying for your insurance to help your family keep you at home.

So, in spy-code, "The Goose has landed."  Moose and Squirrel are a whole different story.


Sunday, May 24, 2015

Sprucing Up.....

For those of you who don't know, we have a wedding coming up this summer!  Citygirl is getting married on August first, and the house will be buzzing with people. 

This means, of course, that we need to make the place look nice. Not that it isn't nice.  But nicer.  Party nice.  You know what I mean.

Expecting an upcoming invasion makes you look around with different eyes.  Clean and tidy somehow no longer look 'fresh.'  So we are upgrading a few things.

Yesterday I priced out new kitchen cabinets.  Redoing cabinets sounds extreme, but our current 'look' is cobbled together and was never meant to be permanent.  We were going to do a full re-do years ago, and then, well, life happened and we just got used to looking at the mismatched cabinets and paid for dialysis and got on with life. 

I came home with the designs and the prices and showed them to Hubby. 

"Wasn't it a lot cheaper to do the other side? That kitchen is twice as big and it cost a lot less!" 

True that, sweetie, but that was because the insurance company paid for most of the cabinets because we had that little fire, remember?  (It was me.  I accidentally set the kitchen on fire.  I put it out, too.)

Thoughtful silence.  Then, "Honey, you need to set the kitchen on fire." 

LOLOL.  I'm not sure they'd buy that a second time.


Wednesday, May 20, 2015

The Bite of Reality....

Clinical objectivity can really only take you so far in your personal life.

I had a meeting with the nursing home staff yesterday afternoon.  Mom is supposed to be there for a quick rehab stint - recover her physical strength and scoot back home to her beloved kitties so she can continue to sit and watch the jewelry channel (not sure what the attraction is, but it's what she watches). 

The nursing home staff do not feel this is going to happen.  Physical and occupational therapy feel that although she is not TERRIBLY weak, she isn't really very strong either.  She has no ambition or drive to become stronger. She doesn't really make any spontaneous attempts to get moving on her own.  She doesn't want to get up and get dressed, and personal hygiene is poor. 

(Um, well, none of this is a particular surprise to me.  Even when my mom was working, if she had a day off, she stayed in her nightgown all day.  Remind me not to get in this habit - it apparently makes nursing home staff think badly of you.  And I've known for two years that getting my mom into the shower is torture, and don't talk to me about her nails.)

Furthermore, they are concerned about her level of confusion.  Her overall in-and-out orientation is a risk.  Although she's never been a wanderer, and she's never ever turned her stove on (the benefits of being ambition-less, I guess), what if that changes?  And she remains, in their opinion, a fall risk.  A fall is what got her in there, and another could happen.

So they suggested three things:  1) Keep her permanently placed there.  Her insurance will cover six months and then we apply for Medicaid.  2) Take her home and send her to Granny Day Care at $70/day (not covered by her insurance, that's $350/week, $1400/month+ when her entire Social Security check is less than $1300) and keep her in sight at all times when we are home with her, including at night.  3) Hire full-time aides to watch her ($13 - $25/hour, also not covered by insurance, making Granny Daycare a bargain by any standard).

And the bottom line on all of this:  Mom is dying.  She doesn't really understand that she is dying, but she is, and she wants to come home to her kitties.

The reality of that brutal, dark truth hit me right between the eyes in the middle of that meeting.   

I have to say that my response earned the respect of my younger brother when I told him about it:  "Stop bringing her meals into her room.  Food is her biggest motivator.  Make her walk to the dining room to get her meals and you will see her get stronger pretty fast.  Work with PT to get her to be able to go up and down four steps - that's what I'll need to get her into the house. Meanwhile I'll call her doctor and see whether she qualifies for hospice services or not, and I'll see what we can set up in terms of family, friends and monitors to keep her safe at home."

She's no more confused now than she was three weeks ago.  If she falls, she falls.  She needs to be home.


Monday, May 18, 2015

Maybelle's View......

Adding a new family member has both joys and challenges.  An adult dog has quirks, and it takes some time to find them.  Maybelle is no exception.

She is sweet.  Everyone who sees her (those not put off by her sheer size) loves her.  She never says 'no' to a pat on the head.  Small children can hug her and squeeze her and kiss her and call her George and she just doesn't mind. 

She is humble.  If another dog does not want to be her friend she will back off and sit down and wait it out.  If Mom's cats want to whack her upside the head a few times, she's willing to take it and walk away.  If Simon wants her leftover dinner, even if she isn't really ready to declare it 'leftover' yet, she'll let him have it. 

She is an excellent timekeeper.  At 5:20 AM her nose touches mine, EVERY morning (scared the SNOT out of me the first couple of days - that's a big set of eyes to be looking at before I get my glasses on!).  She knows when it is time to eat and when it is time to go for a walk.

She knows what she wants.  Cars can drive by, no problem.  Motorcycles, no big deal.   School buses, big blue University buses and most trucks?  Drive on.  But she is determined that someday, somehow, she is going to catch herself either a City Bus or a Ford F150.  Or maybe an ambulance.  Yeah, that would be okay too.

She is enthusiastic.  She will walk, anywhere, anytime, any distance, and come home and be ready to throw a tennis ball around the house.  She will yank your arm out of the socket if there is another dog to meet and greet across the street.  She will happily run behind any jogger.  And whenever she sees Squeaker she gets so happy she blows him off his feet.  ("I'm OTAY!  Maybelle missed me!")

She is NOSY.  No matter what is happening, she needs to be in the middle of it.  She wants to go over to Mom's side of the house and check on the cats and explore several times a day.  She wants to check out the basement, the insides of closets, and anything behind any closed door.  Oh, and what's in that gym bag?  Huh? Huh?

To anyone who has ever considered getting a dog:  Don't pass over an adult in a shelter.  You could be missing out on a Maybelle.


Monday, May 11, 2015

Sixty-six Years of Monthly Payments.....

Babygirl's Medicare went away at the end of February, three years post transplant.  She is now entirely dependent on my work coverage, which has a pretty huge deductible.  So far I've had to pay nearly 100% of my and Hubby's medical costs for the year. 

Babygirl's, however, are in some debate.  I've had some difficulty convincing our insurance company that Medicare has, indeed, signed off. 

Babygirl was admitted to the hospital in March.  And again in April.  She had blood work in between and since.  And our insurance has steadfastly insisted that they aren't responsible.  And they gamely suggest that we aren't either, since Medicare is supposed to be picking it all up.


I've faxed Medicare's letter to them twice.  The second time I got the name of the person who received the fax, spoke to her and confirmed that everything from March 1st on would be resubmitted for payment. 

Then I got the letter from CHOP, warning me that everything would soon be billed to 'self pay' because our insurance wasn't covering. The total is nearly $20,000.  Twenty.  Thousand.  Dollars.

I called CHOP and got the lowdown from them.  I am on the brink of going into collections for some of the March bills.  Crap.

I then called our insurance company, and the young lady I spoke to informed me that Medicare was responsible.  I informed her that I had in front of me proof that I had faxed the Medicare sign-off letter to them more than two weeks earlier, discussing in rather heated terms the meaning of the phrase "NOT covered."  She was not amused.  After several sessions of bad on-hold jazz, she came back and confirmed that Medicare, indeed, no longer covered my child's healthcare.  She then told me that all of her medical bills from March 1st to the present had been send for 'review.'  That didn't sound like 'resubmitted for payment' somehow, so I asked how long does 'review' take?  Thirty to forty-five days for our insurance plan - up to 90 days for some others. I asked to speak to a supervisor.  She said, "I don't see why you would need to do that."  I insisted.  She agreed, and then we were somehow 'disconnected.' 

I called CHOP to fill them in.  They took the information, but said that they couldn't keep the account from going to collections.....unless I was willing to set up a payment plan. 

The poor soul who suggested this to me was clearly used to hearing sad insurance stories from desperate parents, and she was audibly prepared to duck-and-cover under her desk at whatever tirade I might loose in her direction about needing to set up a payment plan for a bill I clearly didn't even OWE yet. 

"What's the least I can pay to keep it out of collections?"  "Twenty-five dollars a month."

Seriously?  To keep my credit rating high enough to qualify for a low-interest mortgage?  To keep from paying collection fees?  To keep creditors from harassing me at the office??  "Sign me up, and keep it going monthly until I tell you to stop."

I did the math. If the insurance doesn't pay, I'll have the whole thing paid off in a mere sixty-six years of twenty-five dollar monthly payments.  What a deal!



PS  I did call our insurance back, reaching the lovely young lady who had received my fax more than two weeks ago.  She checked the case out, added some details and transferred me to a supervisor without any difficulty.  They need ten of her and NONE of the other girl.

Saturday, May 9, 2015

Help Help HELP....

Mom was moved to a nearby nursing home in the middle of the day yesterday while I was at work.  Her friend came, packed up some clothes for her and went over to try and minimize the confusion. 

Babygirl and I went over today.

The first thing we were confronted with as the elevator door opened was an old lady in a wheelchair yelling, "Help! Help!  Help me!"  Babygirl was astonished that I simply walked past her and on to her Grandma's room.  "Shouldn't we go get somebody?" she asked.  By the end of an hour she understood why I'd just walked by.  The cries for help never let up for more than a few minutes at a time.  As we were leaving she asked me, "How do they know if she really needs to use the bathroom or something?"  "I have no idea, baby."

We were lucky enough to arrive just as Mom's aides were coming in to help her get 'cleaned up.'  I filled them in on what she was doing here and what she had been capable of at home only 10 days before.  They were a bit surprised - they'd been afraid to let her out of bed.  I filled them in on the need for her 'panties' (I brought along a bag), helped them get her into her favorite nightie, and promised to come back with her own walker so she could get around better. 

While they were getting her settled Babygirl and I met nice lady who was walking the hallway, fully dressed and carrying a handbag.  She was clearly planning on leaving, but carefully introduced herself to everyone in the hallway.  She  introduced herself, told us she was a nurse and told us we were beautiful - especially admiring Babygirl's black hair. "I always wanted dark hair - I'm just a 'dumb blonde!" she joked, pointing to her patently grey head.  She gave us each a kiss on the cheek, introduced herself to us again, and then to the aide, and then announced she was going home and headed down the hallway.

Mom wasn't hallucinating, was pretty sure she wasn't in the hospital, and was also pretty sure she needed to go chat with the lady who needed 'help.'  "Maybe it would calm her down if I just sat with her."  Good idea, Mom, you go for it.  Make sure you introduce yourself to the nice blonde nurse lady.

Here's hoping the place inspires her to get up and get moving and get strong and get HOME.


Wednesday, May 6, 2015

Alien Visions.....

Mom is still in the hospital.  Her UTI is under control.  As predicted, she doesn't remember that she has cancer.  She is still pretty weak, and her blood sugars have been a little crazy, but the plan right now is to discharge her to a nursing home for rehabilitation for a bit to get her able to walk on her own before bringing her home. 

Visiting her each night has put some other stuff on hold, but it is what it is.

Last night Babygirl went with me to visit her. Mom told us all about how she had mistaken the morning phlebotomist for one of her granddaughters, and refused to let her take her blood.  Apparently she was so convinced (and absolutely sure that the rest of the grandkids were there as well) that they had to get the nurses in, and finally get a different phlebotomist since Mom was sure my niece was not competent to draw blood (true that, but she rocks at massage).  While we were there she got a call from a friend, and we listened while Mom explained to her that she had fallen, and that she has a "prostrate infection."  Um, really?  Not only is it actually called a 'prostate,' you don't have one.  I thought we'd die laughing, and we could hear her friend gasping for air on the other end of the line.

Tonight I went alone, and was privy to a conversation about how Curlygirl has an alien, and how she is pretty persistent about alien rights (but she's so stubborn about everything, right?).  Mom herself saw an alien, a short bald thing.  Mom had some trouble with the alien language barrier, and didn't get his name - aliens are private about such things,  you know.  Then she changed the subject to how the frogs are damaging the doors.

All of this was straight-faced matter-of-fact conversation, held while we admired the sunset out the window.  She had a CT of the brain on Friday night, so I know there are no tumors in there, but I'm guessing she's had a small stroke.  Her dad had hallucinations regularly as part of his dementia - there was an Indian in his living room pretty regularly, and a small dog.  No aliens that I recall, though.

I can hardly think of anything that sucks worse than this.


Sunday, May 3, 2015

A Full Moon Kinda Life....

After our failed attempt at a visit with the pacemaker clinic, Mom just had a rough week.  She complained the next morning of feeling 'disoriented,' although what that means when one already has dementia I really have no idea.  She was acting off, somehow, and was forgetting basic like toileting.  I changed bedsheets, nightgowns, socks, and floor mats.  I checked in a little more often, was really compliant with daily weights and blood sugars and encouraging healthy diet.  I thought maybe the pain in her knees from the near-miss fall on Tuesday was slowing her down so I added Tylenol to her daily medications.  Maybe the upcoming full moon was throwing her off.

On the way home from work Friday, while waiting (behind a police car!) at the ATM, my cell rang. I almost didn't answer - POLICE! - but I snuck it onto speaker.  It was hubby. 

"Em found your Mom on the floor a few minutes ago.  She must have fallen.  We can't get her up.  Should we call 911?"

I love that man, I do.  But, seriously, you do not need my permission to call the Boys in Blue.  By all means, give 'em a call.  (They were rude to him.  Apparently the dispatcher didn't think that an old lady on the floor was an emergency. I told him he'd've gotten more respect if he'd thought to mention that she was unconscious when they found her. It's all in the details.)

I arrived home just a few moments ahead of EMS.  Mom was incoherent, in pain, and freezing.  To the best of her (admittedly poor) recollection she'd fallen shortly after I'd left for work at 8 AM.  It was now nearly 6 PM. 

Off to the ER we went (it's 0.4 miles according to the ambulance mileage record.  We should just build a ramp and coast there).  She was diagnosed with a UTI and admitted. 

Old ladies. They don't get normal UTI symptoms, like cramping an painful peeing and fever.  They get weak and confused and they fall down.  Sigh.

The problem with lying on the floor for 8+ hours is that it causes decreased circulation to the muscles, which causes muscle damage.  Damaged muscles sort of dissolve into something called myoglobin, which leaves the body via the kidneys.  And the kidneys HATE that stuff, so they frequently fail following this kind of event, so it's normal for patients to be admitted and super-hydrated.  Of course, if the patient has congestive heart failure, super-hydration is not the best idea on earth either - our typical tightrope walk with Mom. 

Because every part of her body hurt, the ER scanned her.  Brain - no change, no new strokes.  Belly - no injured internal organs.  Bones - healed 9th rib fractures on both sides (?!?) but nothing new.  Chest x-ray - no pneumonia, mild heart failure, like always.  But on the chest CT.....

There's a mass in the lung, well over an inch big.  It doesn't show on the last two chest x-rays because it's parked behind the aorta.  It's up high, likely not easily reachable for biopsy, but there isn't much doubt that it's lung cancer. 

Her kidneys won't tolerate the dye needed for a PET/CT to evaluate for metastatic lesions, I don't think.  She's a crappy surgical candidate - anesthesia didn't want to take a lesion off her face last year under mild sedation.  No way they are going to want to put her under. 

I told her about it tonight.  I laid it out, kept it as simple as I could, answered the same three questions four times.  And in the end she took the Scarlett O'Hara approach and said, "Well, there's no point in being sad about that NOW.  I can be sad about that LATER."  I'm willing to bet she won't remember it tomorrow, and hey, nothing wrong with that. 

Wish I could say the same.


Wednesday, April 29, 2015

Defying Gravity....

My Mom hasn't been out of the house since her hospital stay in last month, and she was carried out on a stretcher for that adventure.  Prior to that she'd had a doctor's visit before the snow fell.  A handsome young physical therapist came and made her walk and gave her exercises to do, which she faithfully did....in his presence, and not once since.  Memory loss does that.  I confess that I did not add "Making Mom comply with her exercise regimen" to my "taking care of Mom" list along with:  Cleaning the cat boxes; getting the cats to the vet; keeping the house stocked with food, water bottles and disposable panties; sorting her pills and changing the doses weekly based on current daily weight history and recent labs; daily insulin adjustments and blood sugar readings; coordinating nursing visits, PT visits and nurses aides....you get the idea.

Yesterday she had a visit scheduled at the pacemaker clinic.  She hasn't had the pacemaker checked in months.  We no longer pay for a land line and it can't be checked on a cell phone.  I know it is still working because while she was in the hospital she had a coughing spell so hard that her heart stopped beating and we saw the pacemaker take over on the monitor.  Because she is not usually pacer-dependent the battery will last a long time but...the last time she had it checked she'd broken a wire and had to have it replaced, remember that?

So I got her dressed and started moving her toward the car a solid 40 minutes ahead of the appointment, which is 10 minutes or less away. She had to use the bathroom first.  Her memory has gotten so bad that she couldn't quite figure out how to manage both panties and slacks and needed help.  It took my sister-in-law and I both to get her down the back stairs.  And then....

She missed the car seat when she sat down and landed on the car's door frame.  Her knees no longer bend beyond 90 degrees, so this was NOT a comfortable position.  Some quick thinking got a plastic crate stuffed under her before she could slide to the ground, and we pulled her feet out from under her got her more comfortable, but nothing we could do could get her up the extra 8 inches into the car, let alone up onto her feet.  We didn't have a lot of room to work in - the open car door was just a few inches from her left elbow.

My SIL has an excellent sense of the absurd, and despite the obvious what-the-heck-ness of the situation we were laughing a LOT over the next 45 minutes as we worked on what to do next.  Finally she thought of the obvious:  Forget about lifting the old lady - lift the CRATE. 

Hubby got some sturdy rope from the camping supplies.  I got down and threaded it into one side of the crate while SIL got it through from the door side (she's WAY younger than we are, and still flexible, thank God).  With a well-coordinated heave from three sides we got her up, and took her back up the stairs into the house (with her mystified, "But weren't we GOING somewhere?" at every other step).

I called the pacemaker clinic 27 minutes after our scheduled arrival time to let them know why we hadn't come. 

"Would you like to reschedule?"

The question nearly brought me to tears.  How in the name of all that is holy am I going to GET her there?  Even if we had a ramp she might have failed the transfer to the car, and what if she had fallen at the other end when I had no help?  I nearly needed the 911 boys as it was.  Getting her transported home from the hospital in a medivan cost $54, and they did not really assist her into the house.  If my brother hadn't been there she wouldn't have made it in. 

Gravity is not our friend here.


Sunday, April 26, 2015

Do Not Go Gentle....

"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light."

Dylan Thomas

My father has been fading for some time.  Parkinson's disease, smoker's lung, diabetes and arthritis slowed him to a crawl. Increasing deafness added some loss of interest.  Throw in diminishing vision due to macular degeneration, add one minor infection, and voila! You have a fragile old man in a nursing home where once you had a vibrant raconteur at your dinner table, complaining about bumping elbows with the 'righties' at his side. 

My brother and I went to visit him, taking his wife and one daughter each along.  He was alert at lunchtime, but when we came back with a pizza party at 5 o'clock for dinner he was asleep, and nothing we did could awaken him.  He slept in his wheelchair while we shared stories and wings, memories and soda.  And after a couple of hours, the aides came and lifted him into his bed.

I couldn't help thinking as I kissed his forehead that it might be the last time.  The nursing home was supposed to be for rehabilitation, but it looks like he might be choosing gentle over rage this time.


Thursday, April 23, 2015

And Snow in April.....

Babygirl's Saturday lab results came in on Monday. Her creatinine continues to creep downward and is now at 0.98.  Her potassium was also low, a brand-new issue, so we're pushing broccoli and fruit.  Her headaches have been remarkably good, until a pretty bad one this morning.  Her head simply must not like snow.

People are acting like snow in April was just invented, but to me it seem pretty normal.  I recall a Mother's Day a few years back where I snapped a picture of about six inches of snow on my blooming yellow forsythia.  Pretty, but kind of depressing for May.  April snow I can handle, even if it means having to glove up to walk the dogs.

I managed to walk them both together this morning and I didn't die and both of my arms are still in their sockets.  Maybelle is doing pretty well!


Wednesday, April 22, 2015

Days of Sunshine.....

Two sunny, warm days together on a weekend after a long, frigid winter seemed a blessing too big to be imagined.  And to have nothing outside of home planned, nothing at all?  Even more unbelievable!  (Well, we did have to do Friday's forgotten blood work Saturday morning before we went to the gym, but that was a minor setback.  And it had the advantage of staying any possible bad news until after the weekend.)

Babygirl and I went to the gym as soon as it opened, worked out and came home to wake up Squeaker.  Since his Mom and Dad have had a lot of overtime lately, we enjoyed his company overnight.  I slipped out and ran to Sally Ann's Boutique to see if I could find a couple of pairs of pants that wouldn't fall off when I stand up.  I have succeeded in getting back to my pre-KidNeedsAKidney weight, which is delightful except that nothing in my closet fits except a couple of pairs of jeans that I kept hoping against hope would fit again 'someday.'  I got my hair cut and arrived back home in time to make it to a very important appointment.

We went to meet Maybelle.

My old dog, Simon, is 11 years old.  He's an awesome, big little dog, and even though his brother Garfunkel died years ago (we named them right, didn't we?) he's done well as an only dog.  But he's gotten some arthritis, and he won't walk more than a block with me.  I feel a little uncomfortable walking alone in a city at 5 in the morning in the dark.

So I've been cheating on him.  For weeks now I've been checking local rescue sites, looking at available dogs, visiting on visitation days and putting in applications.  (My firstborn is paid for and about to get married, so I was unwilling to sign her away, but it seems like one must do something like this to get a rescue dog.)  I refuse to take a puppy or a very young dog - frankly, I'm too old to deal with that kind of crazy energy.  But this six-year-old looked like she might, maybe, just be slow enough:

It is difficult to tell by looking, of course, because hound dogs always look slow and pathetic.  According to the website she'd been in the shelter a year ago, placed and returned due to 'owner circumstances.'  When I enquired, they euphemistically told me that the owner had to spend some time in a kennel himself, and returned the dog to be re-homed.

Squeaker came along with us, and we put him up on a chair for safekeeping. When Maybelle came into the little room to meet us, she walked up to him, eyeball-to-eyeball, and slurped him right in the nose. Did I mention she's 60 pounds and over three feet tall?  She needs to add another 10 to hide her ribs.  And she drools like Hooch.

It took a couple of days of back-and-forth paperwork, but she's home, snoring on the couch.  She has beautiful indoor manners, and someday (SOON) she'll learn how to walk on a leash without dislocating my shoulder. She ignores cats and wants to be friends with every dog she meets. She looks sad and slow, but she LOVES walks.  I'm thinking she'd LOVE runs. 

But what she loves most is love.  She is the sweetest, happiest-hearted dog I've met in a long time.  Each dog has it's own voice - hers is a Brittish-accented nanny sort, a nice contrast to Simon's "I dunno, Davey...." goofiness.  (Okay, you dog owners know exactly what I am talking about, so stop snickering.)

Welcome home, Maybelle.


Friday, April 17, 2015

Things We Shouldn't Forget.....

While we were getting ready to have Babygirl's most recent biopsy Dr L mentioned that it was her third. 

"No.  It's her second.  She had one shortly after the transplant, and that was it."

Odd, he said.  There appeared to be two previous biopsy reports on file.  But I was SURE she'd had only one.

Until I stumbled across this post:  A Change of Pace....

How. Did. I. Forget. This?

It beggars my imagination to realize that my kid went under general anesthesia for a procedure and I didn't have the slightest recollection of the event.  It frightens me more than a little to consider that our lives have become so absurdly abnormal that I could just blank this out, like a bad first date or something. 

That is just.....wrong.


Wednesday, April 15, 2015

You Impossible People.....

After dinner discussion about the possibility of getting an additional family dog from a local shelter.

Babygirl:  "When I get a house of my own I'm going to get a COOL dog."

Mom: "Can I come visit?"

Momentary pause....followed by snickers, then outright laughter.

Babygirl: ".....well, I guess you can, if you're a ghost!"

Mom: "Do you expect me to be demised?"

Me:  " 'Demise' is not a verb, Mom."

Mom: "You people are impossible to talk to!"

Later....as I am typing.....

Mom: "You have a blog?"

Babygirl:  "I should do a video blog on YouTube.  But I'd need a video camera."

Mom, to me:  "Buy her a camera! You have the solution to all of her modern problems!"

Babygirl:  (Laughing hysterically) "There is no solution for all of my problems."

Mom:  "You have problems? That's terrible, because it's only going to go downhill from here."

"Thanks, Grandma...."

Hmm....and you think WE are impossible to talk to?


Monday, April 13, 2015

The Annual Financials.....

From a medical perspective it's been a cheap year. 

That's a relative concept, of course. 

Babygirl's Medicare premiums rose to a total of $1258 for the year.   Given what we are seeing in terms of our deductibles and increased medication copayments for this year already, we are going to be losing ground on this one now that the Medicare is gone as of February 28th.

Our medical mileage for the year came to only 2545 miles.  Since in 2012 we hit over 14,000, this isn't bad.  The deduction for this would be $764.

Tolls and parking were a mere $140.

Medication copayments came to $2400 for the three of us, with Babygirl being the lowest contributor since her copayments were largely picked up by Medicare. 

Hospital bills, dental care, eyeglasses and miscellaneous came to just under an additional $1000, bringing the total to an almost even $5500.  That's about $460/month, and it doesn't include my pretax payment of our health/dental insurance, which is another $180/month for the family.

$640/month in medical expenses. 

And not one penny of it will be tax deductible this year because we didn't spend enough for that, thanks be to God. 

I have never tried to get a total of what we would owe if we didn't have insurance.  I see the hospital bills, of course, but I don't really have any idea about the pharmacy bills.  And I'm afraid to ask:  I just don't want to know.


Wednesday, April 8, 2015

The Red Salad Bowl.....

Red is, as you know, Babygirl's favorite color.  A few years ago Aldi had a bright red salad bowl set for sale, so I bought it to cheer her up.  The little bowls have largely bit the dust, but the big bowl is hanging in there.  I use it frequently.

It's my Pill-Hauling Bowl.

I have to sort pills several times a month: For me, for my Mom, and for Babygirl.  We each have a pretty good collection of medications, more than can be grabbed in one run to the pill cupboard. (Notice 'pill cupboard.'  Not 'medicine cabinet.'  There isn't a medicine cabinet in the world big enough for a transplant/migraine patient.)  So I grab the big red bowl, load it up with the dozens of pill bottles, and make a separate run for the stragglers and the pill sorters. 

It's become routine for us, and I don't think about it much, but I did it in front of my Mom last night and noted her level of astonishment at the sheer size of the project. 

How weird has life gotten that it seems normal to need a large salad bowl to carry all of your kid's medicine bottles from one place to another?

She takes twenty-one pills in the morning, and twenty-three in the evening, not counting this weeks' extra steroids.


Tuesday, April 7, 2015

Drumroll, Please.....

I got a team call on speakerphone today about Babygirl's biopsy and test results.  I'm certain I've never had test results given by a group before. It was a bit...unnerving.  Like eavesdropping, a bit.

The results were generally very good: The viral studies were entirely negative. There is no antibody-mediated rejection.  There is no cell-mediated rejection.  There is no evidence of damage from the rejection medication.  There are a few neutrophils (bacteria fighters) hanging around for no apparent reason, which is baffling.  There is non-specific evidence of inflammation with no good explanation for WHY it is there, but it is mild.  The final report officially reads: "Mild subacute rejection" but none of the doctors feel this is an entirely correct interpretation of the findings, although none of them could put a better label on it.

Alrighty then.

Well, if you and a team of pathology experts can't quite figure it out don't ask me to explain it any better either.  Just give me the plan.

Since things don't look too bad, they don't want to readmit her.  We are to do a short burst of high-dose rapidly tapered oral prednisone and recheck the creatinine in 10 days.  If things are still not better then the next plan is to increase one of the anti-rejection medications (the mycophenolate) and carry on. 

Works for me.  Let's hope the kidney agrees.


Sunday, April 5, 2015

Canceling Easter.....

Due to the many uncertainties surrounding Babgirl's recent hospital stay, we opted to cancel our usual Easter festivities.  We all went to church as usual, and it was lovely, but there was no Easter egg/basket hunt, no family dinner, no candy gorging, no deviled eggs.

It was a good plan. Babygirl is sleeping.  I'm ready for a nap.  Mom has no idea what day it is.  The Easter Bunny has a cold and pinkeye.  The grandkids can romp at their other Grandma's house. 

We didn't get home until last night at nearly 7. We didn't have eggs died, baskets shopped for, or candy.  Overall, the stress of getting a holiday put together would have outweighed the fun.

I am going to go lay down.  Time enough for Easter next weekend, somehow. 

He is Risen.  He didn't need the party anyway LOL.


Saturday, April 4, 2015

A Long Day Waiting.....

In my experience there are few things more exhausting than sitting and waiting with a sick child, and yesterday was all about the waiting.  We had no specific scheduled time in the OR for the biopsy, so our orders were to stay 'home' in Ambler and wait for them to call us in.  Babygirl took her meds with a little water (minus all the vitamin-y things) at 7 AM as usual, got dressed and packed, and waited.  The call came at 9:09:  Come on in!

The traffic at that hour isn't too terrible, so we had no trouble making the 10:30 arrival time.  The instructions for finding surgery were given over the phone by a recording:  Go to the THIRD floor of the Wood Center, which is the FOURTH floor of the main hospital.  Oh, um, okay, that's clear, kind of.  We accomplished this, went to the pre-op area for a repeat pregnancy test (in case she managed to get pregnant since the test they did yesterday in the clinic!) and then we waited. 

Doctors and nurses came and went.  The biopsy site was marked (right lower abdomen, where the transplanted kidney lies).  We answered the same questions multiple times:  When did you eat last?  Drink?  Which pills did you take?  What time?  One nurse questioned the consent, as it didn't specifically say 'right transplanted kidney.'  Since she has but one transplanted kidney that felt redundant to me, but there are kids with more than one so I saw the point. 

But the entire time the clock is ticking.  And that wouldn't matter except that I know that that tissue specimen needs to be in the pathology lab by 2 PM in order for us to have any results available by the end of the day.  Finally, at 1:10 they had her drink some happy juice and wheeled her down the hall. 

I had had a couple of cups of coffee and a bagel at home at 6 AM, before Babygirl got up.  By the time they wheeled her away I was pretty desperately thirsty (I hate eating and drinking in front of her when she's not allowed - it's silly, but it's me).  I made my first run for the stairs, grabbing a water bottle (which I finished before I hit the check out), a PBJ on wheat and a coffee.  I made the run back up the steps (add an extra 22 - we were up another flight, so 60 total) and went back to the surgery waiting room.  

The surgery waiting room was crowded, full to the gills with people speaking at least 5 languages in addition to English, all buzzing with nervous energy or flat-out fear.  I liked it better there when we were alone at 2 AM three years ago waiting for them to finish Babygirl's transplant.  At least then it was just OUR nervous energy.

The procedure itself is very brief, so she was in recovery shortly after 2, and I joined her there.  They had managed to do the procedure under sedation, so she was already pretty alert, complaining of hunger and thirst.  She ate graham crackers and apple juice and fell asleep.  We waited for a room to open up on the nephrology floor.  She continued getting IV fluids, and drank more intermittently and then, of course....she had to pee.

Following a kidney biopsy you need to remain as flat as possible for 8 hours with a pressure dressing over the needle site to prevent bleeding.  Getting up to go to the bathroom is not on the list of things that are allowed.  For the sake of Babygirl's dignity I'll skip the details but in the end the doctors lost and she won, but not until we arrived at our room on the floor, which wasn't until after 7 PM.  We were the last people in the recovery room.  Rooms were tight, apparently.  Or there was the usual 3-hour delay in discharge paperwork for somebody else up there.  The recovery room wasn't a bad place to hang out.  I had a comfy glider rocker, entertaining conversation with the nurses, and Babygirl slept a lot.  At one point I made another run to the cafeteria for food for both of us (60 more steps!). 

I did some serious rule-breaking, though.  As the clock ticked toward the time for her evening medications, I considered how long it takes for the floor admission process, for orders to go in, and for meds to come up.  Last time she got her transplant meds at nearly 10 PM, three hours late, which led to a misreading of results on the levels of her medications in the next mornings' blood work.  Since we are here fighting for the kidney it seems counterproductive to be missing doses of critical medications, so....I gave her her 7 PM pills.

It is always easier to get forgiveness than permission.  And quite frankly, although the admitting nurse didn't say so in so many words, she knew we made her job a LOT easier.  And in exchange, she bullied the doctors into putting in diet orders for Babygirl so she could order a meal 10 minutes before room service closed. 

Admitting orders weren't put in until nearly 9:30.  She wouldn't have gotten her medications until about 11.  No regrets.  We both slept like the dead.

Preliminary biopsy reports show that there are no large deposits of antibodies in the kidney.  And in morning rounds today the attending nephrologist (I'm sure I didn't get his name right - it simply CAN'T be Breinschwagger, can it?) perked up his ears when I said (for the one hundredth time!) "sore throat for about 8 weeks now").  Questions flew:  Strep tested?  Yes, twice, positive once and treated and cultured here three weeks ago after treatment and negative.  Viral studies?  Yes, historically because of her immune status but not recently.  So suddenly someone is thinking that maybe her acute illness and her kidney's unhappiness are connected - somebody besides me, that is - so they are doing extra blood tests. 

None of these tests will be available today, and the final biopsy reports will not be available until Monday or Tuesday.  They aren't going to keep us here for these.  They are going to make us wait for today's CBC to make sure she isn't bleeding from the biopsy, and today's creatinine before deciding to send us home, but the general plan is for discharge this afternoon.



Thursday, April 2, 2015

Two Hundred and Forty Steps....

We came into Philly for our recheck from Babygirl's hospital stay three weeks ago. To recap:  She was admitted because her creatinine bumped up to 1.7 (normal for a kid is 0.6, normal for Babygirl is 0.8 or 0.9).  Increases represent exponential losses in function, so doubling isn't losing HALF your kidney function, it's more like losing 75%.  Or more.  With hydration, it came back down to 1.1 and they let us go.  A week later locally it was 1.07, a marginal improvement. 

We arrived before 8 AM, as usual, got our paperwork and hiked up the 48 steps in the atrium to the lab, came back down and had breakfast.  Our follow up was with the doctor who took care of Babygirl in the hospital, which was nice.  He discussed her ongoing production of antibodies against the donor kidney.  The antibody levels aren't increasing, which is good.  But they aren't going to go away on her current medications either, which is not good.  Her creatinine is increasing, now at 1.3 despite a week of very good hydration.  He went over treatment options:  Do nothing (which is common, and rather standard-of-care in many places), give intermittent IVIG (IV antibodies to tag HER antibodies and take them out of business so they can't hit the kidney.  She'll keep making more, so they have to do this every month for.....ever?), or do intermittent plasmapheresis (basically superficially similar to dialysis in that it removes her antibodies from her blood and puts the blood back in - the Red Cross does this to obtain platelets).  They can't make any therapeutic decisions without knowing if it is the antibodies that are damaging the kidney.  One of her anti-rejection medications could be the problem, so while we are waiting for those results, let's go visit the sedation team and see if they can fit Babygirl in tomorrow for a biopsy if we need one.

That's on the third floor.  Up the 48 steps we go.  I already know that they are going to say no.  The last biopsy required extra medication because Babygirl is so incredibly ticklish (who knew this would be a medical issue?), and with the weight she's gained due to medications, sedation is no longer a safe option.  No surprise to me, they say no.  If it wasn't safe nearly two years ago for her spinal tap, why would it be safe now?

The medication levels are fine, so adjusting them will not help us.  Biopsy is on, and we need to go to see the anesthesia team ("Even though we were just there three weeks ago?" I ask.  Apparently so.)  Up the 48 steps.  The receptionist checks:  We are not on her list, but everyone is at lunch.  WE haven't had lunch, so we give her our phone number, and go back to the main building (you guessed it, down the steps) for lunch.

We climb back up the 48 steps and check back in, and the receptionist informs us that Nephrology never called them, and if they don't call, we won't BE on the schedule, and she can't get us registered. 

I can honestly say that at this point I should likely have been a little pissed.  But it's seriously already not the worst thing that's happened to me today, not by a long, long shot, and it simply made me laugh.  Babygirl and I both laughed out loud, spun around and headed for....the 48 steps. 

Nephrology called.  We hiked back up. Again.  The receptionist says we are still not on the list, but to wait a few more minutes because these things take time, you know?  We have a pretty good grip on THAT concept, truly we do.  Ten minutes later my phone rang, and it was the anesthesia NP asking to speak to me.  No problem, I told her, I'm in your waiting room. She was a little surprised.  It seems that Babygirl really had no need to be seen in person since she'd just been there three weeks ago and she just needed to update things, but since we WERE there.....

Oh.  My.  Goodness.  I didn't tell Babygirl that we needn't have waited, it would have been just too frustrating.  The NP was kind and efficient, and tomorrow the biopsy will happen, but we don't know what time.  The hospital will call us, in plenty of time, they say, for us to get from here to there for the procedure.

Meanwhile I don't feel too bad about skipping the gym today.


Monday, March 30, 2015

Granddaddy Migraine.....

Last week I worked five full days.  Looking back, that hasn't happened more than once or twice this year so far due to sickness, doctor visits, planned days off and emergencies with Babygirl.  But last week was FULL.  Not crazy arrive-at-eight-and-stay-until-seven insanity, but each day had a pretty busy schedule, and I was there each and every day.

Friday morning, during my weekly paperwork hour, I got anxious.  I'm not an anxious person, so I got cranky.  By two o'clock I was laughing with patients over some silly word substitutions.  And my neck ached. 

By six, I was home, and the ache had moved from the front right side to the area under my skull.  And from then on, I don't remember much.  I think hubby made dinner.  I know I ate some.  I know I was supposed to get Squeaker - he was to spend the night because his parents were working an extra shift on Saturday morning.  I know I didn't get him. There were medications. There were sunglasses.  There was that sickening sensation that the back of my scalp was corrugating, and the frightening conviction that the left side of my head was going to blow off (when in fact, as usual, it was the right side). 

I woke up at six AM.  I'm not sure when I went to bed, or how I got there.

Saturday morning was okay.  I was clumsy, but energetic enough to get through the morning's cleaning and take Squeaker and Babygirl to the grocery store and then the pet store.  (Squeaker discovered that he likes puppies in theory, but not necessarily being in a room full of them when they are all excited to see him and jumping and kissing and stealing his hat.)  In the afternoon and evening the pain played peek-a-boo in an irritating way.  I survived a visit to Doodlebug's birthday party (at the neighborhood bowling alley, for the love of ALL that is holy) and I went to bed, slept for three hours, and was unable to sleep any more despite getting up at 2 to take a Benadryl. 

Sunday was okay in the morning.  After church choir practice?  Not so much.  Hitting a high note points out exactly where the pain still is, throbbing nicely in time with the vibrato.  Oh, director, want to do that last page again?  Sure. One more time?  Absolutely.  Again?  Can I kill you now you sadistic little Russian lunatic?

And yesterday was the day that JuJuBee decided, after being AWOL since Christmas, that she missed her sisters and her girls missed her aunties and Grandma.  Now, don't get me wrong:  I love Boo and Sunny to pieces and have missed seeing them regularly, but adding two screechy little girls to an exuberant little boy in a small house where the preferred toy is a set of wooden blocks...

I took them shopping for Easter dresses.  It was the quieter choice. 

They stayed all day, and despite the pain it was a joy to see them all, but I took a nap for a bit after dinner, and I wasn't sad to take them all home.

This morning there is still just a little pain over my right eye.  And it is still a struggle to say 'right' instead of 'left.'  Thankfully I am only working three days this week:  Babygirl has an appointment Thursday and I took Friday off in case they admit her again.