Tuesday, April 30, 2013

Home Stretch....

Preparing to move my mom in has been a lot of work.  As we get closer to the 'move date' on Saturday we find more and more little things that need fixing, painting, or replacing.  The most recent was the light fixture in the downstairs closet.

Code allows for a fluorescent fixture.  The closet came with a ceramic lighbulb holder with a pull string.  The pull string broke years ago, so we've been making do with tightening and loosening the bulb as needed.  And, in the spirit of code, we use a pig-tail bulb. 

There is no possible way my mom is going to use this system.  She's so afraid of electricity that she won't even change a lightbulb herself, let alone touch a 'live' one.  While this particular anxiety makes me both laugh and smoke at the ears at the same time, there's nothing I can do about it except:

Add it to the list.  Lord bless my hubby.


Thursday, April 25, 2013

Third Year, Week One - Unpainting.....

Over the past year we have painted nearly every room in our house.  All the rooms are now neutral colors, not counting Babygirl's brilliant Chinese red.  This morning I spent a couple of hours cleaning one small room, scraping and steel wool-ing years of accidental paint blops off of the floor.  Unpainting, if you will.

As I worked I let memories of each room wash over me. 

Curlygirl's vibrant October-sky blue, so at odds with her then restless and angry nature!  I remember shopping for room accessories - the furry blue bedspread, the gypsy-bright ribbon valances with touches of green and deep purple, and the lime green pillows and wall shelf that all came together into the most lively and energetic of spaces.

NayNay's lavender, peacefully at odds with the storm inside.

JuJuBees's  quiet morning blue, accented with gentle spring greens and tiny touches of bright pink and purple, restful with a hint of the restlessness that I still see in her.

Bella's hot, hot pink.  Black curtains and a black border running at chair-rail height around the room like a belt.  Intense and passionate, still her trademark qualities.

LittleMan's geometric diamonds in orange and green and navy on white walls - as busy and energetic as only little boys can be.

GiGi and Babygirl's pale orange sherbet, a color I mixed myself from leftover white paint and an 'oops' color from the hardware store, sweet and girlish.

Citygirl - so many changes over the years!  The white room splattered with red, yellow, green, blue!  Beautiful and bright, my monkey baby.  Minnie Mouse pink, then a very mature forest green with white and lilac trim - my growing young lady.  And finally, vivid Caribbean blue with dark blue sponge painting low down, a most fascinating underwater effect for teen parties.

Unpainting:  Rewinding blessed, sweet memories of children who are no longer little, no longer in my hands or care, but never ever ever far from my heart.  Unpainting, and uncovering the truths that truly matter:  Love never ends.  Childhood lives forever in the hearts of those who have loved children, no matter where those children go.  I will always be their mother, and they will always be my babies.  Always.


Monday, April 22, 2013

Monday, Monday.....

I have often told people that I come to work to rest.  It's not a witticism, it is the plain and simple truth.

I spent much of my weekend packing and moving and packing and moving and packing and moving stuff from my Mom's house to here, where I carry all the boxes up to the second floor to store until she actually moves in in two weeks.  Babygirl was most helpful in this endeavor, carrying nearly as much as I did.  Since JuJuBee still has (had) stuff upstairs, we brought THAT all down (hey, we were up there anyway) so she could carry it all up two flights of stairs to the attic.  Babygirl helped with that as well. 

When we finally come to UNpacking, every single thing is going to need a good hose-down to get rid of dust, cat fur and nicotine.  I'd have done that before packing it all, but I wasn't the only one doing the packing (my Mom has one fantastic friend who is a packing demon!) and it will probably be simpler to clean things as they are being put away. 

In the midst of all of this I still need to keep my side of the house kidney-transplant clean.  I started cleaning before church on Sunday, and in the process discovered a pile of mail that included a bank statement.  I had just paid bills the day before and would have balanced the checkbook if I'd known the statement was here, so I sat down and took care of it.  Somewhere along the way a bit of panic set in - so MUCH to do, so little time in which to do it!  So I did something I rarely ever do - I skipped church.  The extra three hours did allow me to finish cleaning, so I could devote my afternoon to packing and moving and packing and  moving and .....you get the idea.

My thighs are KILLING me.


Friday, April 19, 2013

Two Years......Week One-oh-four......

It was two years ago this week that Babygirl was diagnosed with nephronophthisis.  Twenty months since she started dialyis.  Almost fifteen months since her transplant. 

There should be something profound for me to say.

I was talking about this with my Mom, and she said, "Well, what have you learned?"

"I've learned they can't fix her."

The pain I feel about all of this is still fresh and raw.  I think that it's still so painful because there is never time to allow for healing.  Just about the time a scab starts to form, something comes along and scrapes it off.  Sepsis. (Scrape) Rejection. (Scraaape) Headaches. (SSScraaapppe)  Biopsies. (Sandpaper) Spinal tap. (RRRIIIPPPPP)  Dehydration.  Missed school. Antibodies.  Headaches. (Pick pick pick pick pick)

We travel to Philly next weekend.  I could use a no-news visit.

And a ride on a rollercoaster - the real kind, not the emotional/medical kind.


Wednesday, April 17, 2013

The Definition of Insanity......

They say that insanity is defined by doing the same things over and over and expecting different results.  We seem to be caught in that loop with my mom.

Two weeks ago she entered the hospital with extremely elevated blood pressure, fluid overload and congestive heart failure.  She was admitted, discharged after three days with a small increase in one of her blood pressure medications and a restriction on her sodium intake (nothing new, and nothing she's likely to actually follow) and a restriction on her fluid intake (which no one told any of us about and she forgot about so she never did that either).

Sunday she was readmitted with exactly the same problems, only worse enough to land in the ICU.  Yesterday I tried to convince them of the risks of fluid restriction (hard on her failing kidneys!) and that they should let her drink and find a way to treat the resulting fluid overload.  Today they called me at work at 10 AM and told me she was all ready for discharge, and don't worry about the fluid restriction. 

So my sister-in-law went to the hospital, listened for an hour as they described the diet Mom is supposed to follow, received information about her follow-up appointments, and brought her home.  After work I went over to see what they had changed with regard to her medication schedule. 

Nothing.  They changed nothing. 

Well, okay, they suggested that she take her vitamins at noon instead of with her morning medications so they wouldn't upset her stomach (they don't, and she takes her 'morning' meds at lunchtime which is when I'm free to call and remind her anyway).  But there wasn't a single indication of and change in any dose of any medication AT ALL.

So, let me see if I understand this correctly:

Two weeks ago you treated her for fluid overload by giving her an in-hospital fluid restriction and then sent her home on exactly these meds with a fluid restriction she knew nothing about and did not follow, with the result that she took exactly two weeks to return to you in worse condition than she arrived in last time.  Today, after treating her fluid overload with an in-hospital fluid restriction, you sent her home on exactly these meds without a fluid restriction.   So somehow THIS time she's supposed to just be fine two weeks from now?


And what's the upgrade from ICU next time?  As we so rudely put it in medical school, "Discharged to Heaven"?

And there is no way I can attend her doctors' appointment tomorrow.  I'll have to see about the one next week. 



Tuesday, April 16, 2013


Mom is out of ICU.  They have resumed the fluid restriction (1500 cc's/day - less than two quarts) that they failed to tell us about when they discharged her last week.  I spoke to her nurse tonight and he has no idea what the ongoing plan is.  The conversation went like this:

Me:  There's a problem with the fluid restriction.

Nurse:  And that is?

Me:  She has dementia.  They sent her home with this restriction two weeks ago today and she's back because you didn't tell us and she didn't remember.  And even if she does remember, she's stubborn and she'll do whateverthehell she likes when she gets home. 

Nurse:  I'd noticed.

I pointed out the issue with the dementia and asked why the doctors weren't communicating with us more.  He pointed out (politely) that he can't read their minds. 

The nurses aid mumbled something about "institutions" and "arrangements" and "discharge planning" and gave me a number to call tomorrow.  She informed me that the case manager comes in "wicked early:"  8 AM.  This is, of course, when I start work.  I guess if you work the evening shift 8 AM seems pretty early.


The sad thing is that I know that if they don't manage the fluid restriction, her heart will fail.  If they DO manage the fluid restriction, her kidneys will fail.

It's a suckathon.


Monday, April 15, 2013


...I C U.

Just about the time I put up yesterdays' post, I got a call from my mom.  She complained of being short of breath.  We had just rented and started watching 'Lincoln.'  I confess that this made me want to pretend she was fine, just fine.

"Take a couple of extra Lasix and call me back in half an hour if you don't pee."

I mean, seriously.  I just spent the entire day with her, packing and moving stuff and balancing her checkbook.  I have her dirty dishes filling my dishwasher.  I'm tired, I've had a frozen rum cream with pineapple juice and there are brownies in the oven.  And 'Lincoln,' dammit.

Five minutes later I get a call from my sister-in-law on my mom's phone, asking for clarification of instructions.  It seems that mom was unable to open her pill bottle for the extra pills.  And maybe she's not having THAT much trouble breathing.

Half an hour later she calls.  She's produced some urine but she's still SOB (it's a medical abbreviation, okay?).  I tell her to give it another twenty minutes and try to concentrate on Mary Todd Lincoln.  Sally Field doesn't have to work too  hard to get that accent right, right?

Twenty minutes and one brownie later she calls, no better.  Or maybe better.  She can't tell.  I finally give up and tell her to get ready for me to pick her up and go to the ER.  When I was 2/3 of the way there she called to tell me not to come, she's okay really. 

When I got there she was breathing between words.  She was clearly not breathing great when I was there earlier, but this is definitely worse.  While she's struggling to stuff her swollen feet into a pair of clogs, I glance at her pill sorter.  The morning's pills are still in there.  And I know for sure I called her to remind her to take them because I also told her that I was coming over.  I just didn't think to confirm while I was there earlier that she had actually TAKEN them.  A quick glance at last weeks' pill sorter showed that she had missed five of fourteen doses.  And I call her twice a day.  Every day.

The ER waiting room was jammed.  We skipped to the front of the line.  A blood pressure of 229/89 with an oxygen saturation of only 73% (we're working on a 70 - 100 scale here folks) really gets folks hopping.  We arrived at 10 and by 11:30 she was officially admitted and awaiting a bed in the ICU. 

When we arrived in the ICU I pulled the 'do-you-know-who-I-am' card and refused to leave, explaining that she has dementia and that if they want the real story they'd better keep me nearby.  Wouldn't you know that THIS would be the time that Mom knows the correct date and day of the week?  I'm not sure that I knew these things for sure at that point since it was nearly 3 AM. 

I arrived home after 4 AM, and my first patient is at 8.  I guess I'd best get moving.  And given that I have something going on every evening this week, I guess I'm not going to finish watching 'Lincoln.'



Sunday, April 14, 2013


We moved this week. 

Not far - just from the right side of the house to the left.  And not much - our bedrooms were already on this side.  But the living room, kitchen and dining room all moved right-to-left.  Distance isn't much of a problem obviously, but space is.  The right-side kitchen is two rooms combined with about a half-acre of counter space and 18 cupboards.  The left side is half that size with 8 cupboards and about a yard of counter.  There are two lovely built-in corner cabinets in the dining room, and the dining room itself is larger - so much so that we've designated half of it as TV area, and half as dining. 

The right side painting is moving right along, and I've begun transporting Mom's things here.  She has a wonderful friend who is helping her pack.  I'm running everything I UNpack through the dishwasher since there is some mousie doo-doo in a couple of her drawers (oh, I SO don't need mouse crap germs around Babygirl!).  We sorted through her clothes.  She seems to think that she still needs her work wardrobe and that she needs to save all three of the sizes she's been in in the past 15 years.  Sigh.  And as she pointed out in the middle of all this, "I am  not as bad as Aunt Mary." 

True that.  Aunt Mary was a pack rat. 

But she pack ratted in a different way.  She had tons and tons (and tons and TONS) of clothes.  Mom has roughly 50 coffee mugs.  When I suggested  she 'thin the herd' she remarked that she might need them.  Honestly, I'm pretty sure that there is no way she'll fit 50 people into our old apartment.  I'm not sure she knows 50 people who'd all want to show up to a coffee hour at her place, but, hey, I've been wrong before.  And really, aside from the mugs, she hasn't got excessive possessions.  But moving is still work no matter what.  And moving someone with dementia is even harder.  She forgets what we've packed, what we've decided to hold off on and why, when the move is happening and why we decided it needed to be done in the first place.  

Sigh.  It's going to be a long two weeks. 


Wednesday, April 10, 2013

Week One-oh-Three - Grace....

The Grace Period.  That small span of time when you are learning a new job, a new skill, a new culture and the people around you don't expect anything of you because you know nothing about what you are doing.  That gift given to you by friends and strangers alike that allows you to bumble along without apology or expectation. 

The people who love me are full of grace.  They pick up the slack, the loose ends, the pieces.  Nobody expects me to do more.  No one asks favors.  No one lays a sense of obligation on me for favors given freely.  No one tells me to buck up or suck it up.  No one tells me to get over it and move on.  No one tells me to just get used to it. 

Nobody but me.  From the inside comes tremendous pressure to pull myself together and get a move on.  I want to get back up to full speed at work.  I want to take better care of my mom.  I want to get back on track with exercise.  I want to pull the church choir back together.  I want to be on time for Sunday School.  I want to run a fundraiser for the mission team.  There is no end to the number of things I feel like I should be on top of, from housework to homework;  from education to educating.

There is no way to be on top of all that stuff.  I sometimes feel like a rousing success if I'm not UNDERNEATH all that stuff. 

I've never been good at allowing myself a Grace Period.  And good Lord, it's been nearly TWO years since the last time I thought things were 'normal.'  I SHOULD get on with it, get used to it, get over it.

But I can't.  Allowing myself grace is nearly as far out of my reach as accepting life as it is and moving on.


Sunday, April 7, 2013

Clothing Anxiety......

Let's face it - I am a big girl.  I'm not talking about being a grown-up, or being able to act like one.  I'm talking dress and shoe size here.  I'm of German stock, the race of people that the Romans referred to as 'giants.'  The only time I ever found my shoes located in the middle of the size rack (as opposed to a 'section' of two pair of shoes in the back of the store) was when I was in Germany.  And while I am 55 pounds lighter now than I was seven years ago, I am still not a slender gal.  And I hate shopping.  So I don't have a huge variety of clothing in my closet.  And since I am 10 pounds UP from B.T. (Before Transplant), my 'comfy' jeans are snug, and my 'sexy' jeans need those 10 pounds GONE before I can be seated with them in the zipped position. 

Hospitals are NOT comfy places.  There is no room service coffee for moms and dads.  In order for me to get coffee in the morning, I need to get dressed, at least enough so that people don't mistake me for the local homeless. 

By chance a few weeks ago I spotted a pair of what might generously be termed 'Yoga pants' on a sale rack at Walmart.  They looked to be close to my size and they were two bucks, so I tossed them in the cart.  Turns out it was a GREAT move.  If I could go back in time I'd grab them ALL. 

These babies are the epitome of comfy.  And they apparently hang well enough that Babygirl thought I'd bought new pants for work, although I'm not sure they'd pass a grown-up work clothing inspection.  I am not embarrassed to appear in public in these (as I would be in jammie pants, although that has not stopped me from going for coffee in them in the early hours LOL).  But I only have one pair.

What if Babygirl get sick, and they are in the laundry???

Okay, in the great grand scheme of things I realize that this is so not important.  I'm actually laughing as I write this, because I get how precisely silly this is.  And then I stop laughing and get a little teary-eyed because I know that it is precisely this silly thing that will make it easier to tolerate the next hospital stay.   Little comforts are EVERYTHING when you are locked up in a hospital with your child.  The right brand of deodorant. A decent toothbrush.  Good quality lotion.  Conditioner that smells like the beach, and like home.  And pants that pass as adult clothes when you are facing down a group of strange doctors at 6 AM and yet don't strangle you when you reach for a chocolate bar to cheer yourself up afterwards. 

There are so few ways to tell people what this journey is like.  But it's a lot like this.


Friday, April 5, 2013

Week One Hundred and Two - Painting With Brownie Mix....

I took this week off.  I asked for it months ago.  We were supposed to be all ready for my Mom to move in by the first of the month, but with one thing and another we'll be getting her here in about two weeks. 

It was good that I had this week off scheduled.  Babygirl's biopsy was so delayed that this timed out well.  Had she needed to stay in the hospital I wouldn't have had to reschedule anything except my life.  And since we got home in a timely fashion, I have time to paint. 

We have a good friend who is tackling the walls and ceilings, but he's not as able as he once was to get low down and paint trim.  I estimate that the trim on this side of the house was last painted sometime before we bought the place 21 years ago.  It's grimy, dry, and grey-looking.  The 'white' trim includes the stairs, handrail and spindles.  An acre of so of 8" baseboards and a mile or two of window trim.  It also includes an entire wall of bookshelves.  And the fireplace bricks.  It's a LOT of white. 


I have been painting this stuff for weeks off and on.  And I've been staring at those bricks.  It's not as if I haven't painted bricks - I think I've painted the fireplace on the other side twice.  So I know for certain just how big of pain this is.  And frankly, I'm tired of the white.  We don't have the funds to do a big makeover, but if I'm going to buy paint anyway, I can buy any color, right? 

The walls are a nice pale khaki.  I brought home a handful of paint chips and let them sit against the fireplace and the walls, and picked two more colors - one a darker version of the khaki and one dark brown.  I trimmed out the space behind the shelves in the medium color, and tackled the fireplace with the brown, which is named "Chocolate Sparkle."

Babygirl is helping with this project.  When we opened the paint can she looked in and said, "It looks just like brownie mix!"  She has a point.  We're a little over halfway done painting with the brownie mix.  I'm not 100% convinced this was a good idea, although it IS quite a change from the white. 

The good thing about painting is that it's a bit like getting a haircut.  For $25 and a bit of time you can change things.


Tuesday, April 2, 2013

A Change of Pace....

Babygirl's biopsy report was essentially negative.  There is some kidney damage that is likely due to her tacrolimus.   Since she can't tolerate Rapamune and no longer qualifies for an experimental protocol, they are keeping the dose as low as possible. 

There is no evidence so far that the antibodies she is producing are actually damaging the kidney.  That means that we were discharged from the hospital with instructions to follow up in one month.  No further biopsies are needed unless her creatinine rises significantly.  The theory right now is that the antibodies had a chance to get started because they had to drop the dose of her Cellcept last spring because her white cell count dropped so low.  They are gradually increasing the dose.  Although they can't stop her from producing antibodies, they can attempt to control the cells that make them.

We can live with this kind of change of pace.  We packed for a one-month stay and left after 24 hours.  Since it's usually a bit more the other way 'round, I'm pleased.

Rejection is inevitable.  Timeline is unknown.  But at least we don't have to do anything new or difficult about it.

We'll be home tomorrow.  Oh, and Mom made it home from the hospital today.


Monday, April 1, 2013

The Waiting Room.....

Hospitals run on their own time, and their time runs slower than regular time.  Our 2:30 biopsy just got underway, and I am hanging out with a couple dozen other parents in the PACU waiting room.  This is where we waited during her transplant, although the room was empty then.  This is where I SHOULD have during her spinal tap and MRI's.  There's coffee.  There's a computer or six.  There's a receptionist who will hear when Babygirl is out of the OR and in recovery.

The energy is surprisingly low-key.  I guess everybody deals with stress the way we did when we were here for all those hours:  food, bad jokes, family support. 

Today, while stressful, is relatively routine.  It's the results we get tomorrow that change everything.  Worrying is pointless, but it's almost become a hobby.  I do my best to shut off everything that I know, because ignorance is truly bliss, but I have limited success controlling this particular switch. 

She'll be out before I know it, and then she will rejoice in popsicles and chicken broth.  We'll watch the Disney Channel, or the movies she brought along (Little Women?  Yippee!  Percy Jackson?  Well, ok, if I must.).  We'll play card games. 

And we'll wait.