Sunday, March 31, 2013

Midnight in the ER.....

ER's have their own rhythms.  Patients tend to come and go in a rush.  Fill, and empty.  Fill, and empty.  Tonight's arrival coincided with a fill phase.  We watched three different people in hard neck braces get wheeled in from whatever car crash they were extricated from.  We saw family and friends weeping in hallways.  We listened to the punch-drunk humor of the nurses and aides. 

We arrived at the crest of the wave. 

Mom came over last night to eat a hearty dinner of scalloped potatoes and ham.  She hung out while a large, loud, room full of grands and great-grands decorated Easter eggs, chatting about anything and everything.  She watched Boo heave eggs (miraculously breaking only one) into cups of dye.  She watched as Citygirl revealed the stunning, incredibly sexy results of a recent photo shoot that she had modeled for my talented sister-in-law.  She admired Squeaker's dye-stained hands.

And she seemed fine.

I wasn't the one who escorted her into the house or I might have notice sooner that she wasn't breathing well.  But since she didn't move a step the entire time she was there, I didn't realize until everybody was packing up to go home that she was in pretty tough shape.  She got up, walked three steps, and her lips turned blue.  I had to put a chair underneath her where she stood because she couldn't make the three steps back to the table.

Since I couldn't get her out of the house, I called 911.  This remains the fastest way to get six attractive men to arrive at your doorstep at one time. 

We hit the ER, where her condition got her a lot of immediate attention.  Blood pressures of 211/88 coupled with oxygen levels that refuse to rise over 88 ON oxygen keep the nurses hopping.  And the repetitive cycles of long runs of abnormal heartbeats that overrode her pacemaker REALLY intrigued them.

It took from 9:30 PM to almost 2 AM to get her stable enough to admit to a monitored room. There was Nitropaste.  And IV Lasix.  And pills.  And a fourth med given by IV, all just to get her blood pressure down to 170/80.  And there were no monitored beds available, so when I left at 2:30, the plan was to monitor her in the ER until a bed became available.  I punked out at that point.  I have never left a family member alone in the ER before - I always stay until they are tucked in bed upstairs, translating the medical terms into English (I am bilingual.  Most doctors and many nurses are not.) and generally fetching and carrying.  There was no way I could do that this time.  When it was clear that she was stabilizing enough to survive, I had to move Babygirl and her biopsy back to the top of my list and hope for the best.

This is the first time in over 20 years that I missed the Easter sunrise service.

It sucks when the first thing the ER doc says is, "Don't I know you?"


Friday, March 29, 2013

Week One Hundred and one - Crazed....

Last year at Eastertime Babygirl was still recovering from her transplant.  We were still adjusting to the necessities of her new diet, new housekeeping standards, and medication regimen.  If I recall corrctly, we were just finishing with needing to visit Philadelphia twice a week and were down to weekly visits.  Since those visits were on Mondays, that meant that Sundays were travel days. 

We weren't yet into the rythym of the travel.  Each trip still had an urgent, shot-out-of-a-rocket feel to it.  Now, the bags pack themselves, the car goes into autopilot, the music rocks and we're there before we know it.  Then, not so much.

So last Easter, I was crazed.  I can admit it now.  I'm getting better at spotting crazed, but I'm not any better at preventing it.  But I think I'm less crazed about the kinds of things that can't be changed, like family holidays overlapping medical commitments. 

God bless my family.  My Easter Bunny brother (who was caught on film performing his duties here: and everybody else dealt with my mommy-on-the-edge-of-hysteria mindset without comment.  Looking back, it was not my finest moment in hospitality.  I'm impressed that they are coming back again this year. 

But if there is any holiday that centers on forgiveness, Easter is it.  So tonight I'll attend Good Friday services and sing in the dark.  I'll remember the Love that gave His all for us.  And I'll rejoice in the resurrection, enjoy some candy, and not plan on leaving until everybody is done celebrating, however late that is.

And I might even buy the Easter Bunny some donuts.


Wednesday, March 27, 2013

It's a Biopsy.....

It's been a long day.  My friend's son's funeral was this morning.  To make it possible for me to go, my schedule got rearranged, losing my afternoon and morning off, and stuffing a lot of people into a theoretically short afternoon.  I have two students, which makes juggling the day a little more challenging.  And I got a phone call from a Philadelphia area code that made me have to walk out and leave part of my lunch behind.

The call was from anaesthesia.  "We have a few questions for you."  "Well, okay, but first I have a question for you.  Are we having a biopsy?  If so, when?" 

She was a bit set back by the question, but filled me in on the details.  Babygirl will be admitted Monday for an afternoon biopsy.  No food after midnight, clear liquids and meds until 10 AM. 

Length of stay is entirely out of my hands.  If they opt to start plasmapheresis, it could be a while.


Monday, March 25, 2013

The Swearing and Screaming Phase....

When Citygirl was six, I bought a swingset for the back yard.  It was made of wood, included a slide and a set of monkey bars.  Some assembly required.  Most of the time I had no regrets about being a single mom, and Citygirl's dad had proven to me a couple of times over that he had no idea which end of screwdriver to use, but I did occasionally miss having a second pair of hands for a project.  And this one was a doozy. 

After a couple of hours of assembly, willingly if not ably assisted by Citygirl, I called my best friend and asked if Citygirl could come over for a couple of hours.  "Sure, why?"  "Because I've reached the swearing and screaming phase of the project and I think she should miss this part."

So today I placed a call to CHOP to try to figure out if Babygirl is scheduled for a biopsy yet or not. 

They told me in February that this biopsy is necessary.  They told me they needed to see if the antibodies she is making are hurting the kidney.  And what the hey, I have to believe them!  Short of returning to residency and becoming a nephrologist myself, I have no option but to believe what they tell me.

Babygirl hasn't been seen by a doctor since February 18th.  The anticipated biopsy date of March 14th came and went.  The next date they are aiming for is April 1st, which is one week from today, and as of this morning we had no news about whether or not they are proceeding.

I asked the receptionist who answered the phone if the procedure has been scheduled yet.  He told me that they were waiting to hear from the sedation team.

"The sedation team rejected her as a sedation candidate in NOVEMBER.  They told us more than a month ago that they weren't changing their minds about that for this procedure.  Last I heard what we were waiting for was a room in the OR and general anaesthesia!"  I'm sure I said more. I'm sure I said it loudly. I'm sure it included, "I know you aren't the person responsible, but you are the person on the phone.  I need answers." 

I got transferred to the nurse practitioner, who, among other things, hinted that there was some degree of disagreement among the transplant doctors about the necessity for the biopsy.  She wasn't sure what the hold up was on planning.  And so on and so on.  While we were having this discussion, my student arrived to tell me about our last morning patient, and the alarm went off on my phone to remind me to call my Mom and tell her to take her pills.  And right about there, I hit the swearing and screaming phase of the project.  "My dad used to address juvenile behavior like this by telling us, 'Shit or get off the pot!'  So pick one or the other but here's what I want you to do:  I want a call within the next 24 hours giving me the date and time of Babygirl's next appointment.  And I want to know what that appointment is FOR - recheck or biopsy.  Cancel the f***ing thing or make it happen, but stop making me crazy.  My life has PLENTY of stress without this shit."  I offered to us my inappropriate anger on the OR if she thought they needed some inspiration to move things along.

I then turned to my flabbergasted student, listened to her case history and dealt with the patient. I ate lunch in bites between phone calls and paperwork, and totally forgot to call my Mom about her pills.

The NP called me back toward the end of the day.  We are to come in Monday.  She doesn't know for sure if we will get a biopsy or a recheck visit, but the plan is to proceed with biopsy if the OR is available. 

So it seems it's down to the the Pantie Fairy.  If I pack a weeks' worth, will we get to come home on Monday without a procedure?



Sunday, March 24, 2013

It's a Killer....

A good friend who also happens to be a co-worker suffered the unthinkable this week.

It's a long story of suffering.  Her son, 38 years old, has had kidney stones.  Not just one or two, but dozens, maybe hundreds.  We don't think of kidney stones as anything more than an extremely painful nuisance, but he needed repeated procedures to remove stones, to break up stones, and to recover from stones.  One kidney had over 40 stones at one time, and the decision was made to remove that kidney.  We all know that you only need one good kidney to survive, right?

What we all also know, and don't like to contemplate, is that surgery is a BIG deal.  Big.

He came home from the hospital.  He coded.  Mom did CPR.  He arrived at the hospital with a heartbeat, but he did not survive. 

I have no idea what went wrong, but I have the list:  Blood clots, delayed medication reactions, infection - to name a very few.

It doesn't matter.  What matters is that another family is suffering because they lost a young loved one to kidney disease.  Mothers should never have to bury their sons.  Never. 

March is National Kidney Month.  Sign your organ donor cards.  Tell your family.  And consider donating for research:


Friday, March 22, 2013

Week One Hundred - Blessed are the Flexible....

Babygirl and I went to our first yoga class yesterday.  I can't recall what type of yoga it was, but the focus was on deep relaxation.  We spent an entire hour lying flat on our backs, focusing on letting all the stress out of our bodies and breathing deeply.  I have to say that emptying myself of stress was a challenge, but neither Babygirl nor I felt as if it really took an entire hour.  And she didn't have a headache today, so maybe it's worth continuing.  But aside from getting up and down off of the floor it didn't require nearly as much flexibility as I expected.

Today is my birthday.  Hubby is still not 100%, so we decided to try for a simple restaurant with a short wait.  Two years ago that would have meant our favorite Chinese buffet, but Babygirl is not allowed to go to buffets anymore due to possible food contamination, so anywhere we go must be a make-it-fresh kind of place.  We settled on Friendly's, and I was looking forward to a Reese's Peanut Butter Cup sundae!

When we arrived, Boo in hand, they had a waiting time of nearly half an hour.  Not being new to the toddler-in-a-restaurant situation, I decided that this was not the place for us, so we went to local dive that serves amazing hot wings.  The wings were amazing, as were the onion rings, spiedies and fries.  Boo tried everything and loved it all except the hot wings.  She liked the idea, but you know that delay when something that is really spicy tastes great and then suddenly the heat is there?  We are mean people.  We let her do it twice.

We stopped for Ben and Jerry's on the way home, and I'm eating 'everything but the....' as we, well, speak.

"Blessed are the flexible, for they shall not get bent out of shape."

It was a great evening.  I love my family, and I'm eternally grateful to have them.


Monday, March 18, 2013

Disaster Du Jour....

Since going more than a week without some sort of health disaster seems to be out of the question for our family, Hubby decided to step up to the plate and take one for the team.

He awoke Sunday feeling fine.  By 2 PM he'd lost about four pints of blood in bouts of intermittent rectal bleeding.  Not exaggerating in the least.  He started with a hemoglobin of 14 and dropped to 10.  The bleeding stopped on its own, right about the time the pain kicked in.  They admitted him from the ER, gave him 24 hours of antibiotics and he's home and comfy.

Diagnosis:  Diverticulitis.  It is, IMO, an adequate explanation for the pain.  I'm not as convinced about the bleeding, but he has a follow-up appointment with a surgeon, and I see a long-delayed colonoscopy in his immediate future.  By the way, spellcheck doesn't want him to have a colonoscopy.  Spellcheck thinks he needs a kaleidoscope.  Hubby thinks that's what he'd rather have too.

Now if they'd just schedule Babygirl's biopsy so we could actually plan ahead it would be great.


PS I'm proud that I managed to keep the words "chainsaw" and "massacre" from my post.  LOL.

Saturday, March 16, 2013

Errands and Miscellany.....

Scraping and sanding and standing on ladders isn't all I've accomplished on this long weekend.  Friday was a busy day for both Hubby and I, but since my hands were less full, I picked up Squeaker at day care, adjusting my day a bit.  Since minding a not-quite toddler is not compatible with painting while standing on a ladder, I switched to errand-running instead.

My birthday is coming up, and I need to renew my driver's license (due every four years on one's birthday in this state).  I had misplaced the renewal paper, which required a vision screen, and decided that I'd just head to the DMV and do the whole thing there.  Turns out that it's a good thing I did.  I hadn't noticed that the paperwork required and in-person visit to renew my photo.  It's been twelve years since they last updated it, and I must say that I have changed just a touch since then.  I'm not convinced, however, that a photo taken at the end of long day of construction work and baby-hauling is necessarily representative of my current good looks. 

And speaking of baby-hauling:  Squeaker is a BIG boy.  I have nothing but respect for the strength my tiny daughter must be developing to carry him around.  By the time I loaded and unloaded him from the car a few times my shoulders were screaming.  But he is handy to have on such trips.  He is SO adorable (honest, not just Grandma bias!) that people go out of their way to make his day (and therefore my day) pleasant.  They even let us skip a line at the DMV - He's that cute.


And for those women who are interested in my saw: It's the single best tool I have ever owned, with my hammer drill a close second.

And now, on to painting, followed by the Mission Team's chicken and biscuit dinner fundraiser.  I'll be singing for tips if anyone local wants to hear that!  And I'll take tips if you don't want me to sing too!


PS Babygirl's recent labs (done locally) are okay.  Her creatinine is 1.0, stable.  Dr B went on to inform me that they are "going to" set up a biopsy.  Really??? Dude, how long can this take???

Thursday, March 14, 2013

Week Ninety-nine - Scaffolding......

"I need to buy some scaffolding."

I have noticed that when a middle-aged woman in a pink coat addresses such a comment to a man in an Orange Apron, the first thing he does is look around for The Hubby.  When I am with The Hubby, all further conversation is addressed to him.  When The Hubby makes the request, no one even looks at the middle-aged woman.  But, hey, I needed scaffolding, and a little overt sexism is not going to ruin my day. 

Some time ago a tenant damaged the wall in the stairwell and patched it - badly.  The walls there are none too pretty anyway - someone else put textured paint on the ceiling and the opposite wall, but left the inside wall flat, likely because the banister is in the way of such a project on that side.  The patch is nearly 15 inches across, and very bumpy.  I assumed that they punched a sizable hole in the wall moving something up or down the stairs.  Since we are painting, I decided to flatten out the bump.

Ah, you say, THAT's why you need scaffolding.  Painting a stairwell is very, very difficult. 

True.  But you are clearly unaware of my ninja-level skills with a paintbrush duct taped to a broomstick.  I've done this before with my feet firmly on the ground. 

No, the problem arose from the bad patch job.  I tried to sand the bad plaster, but it turned out NOT to be plaster, but rather something like bathtub caulk that seriously refused to be sanded.  Turning to my handy-dandy scraper, I discovered that this large collection of whatever-the-heck it was was attached to about four layers of painted wallpaper. It peeled off rather easily.  And then I made the odd discovery that there was NO hole in the wall. 

I'll be darned if I can figure out why, exactly, there was a 15 inch lump of bathtub caulk attached to the wall.  And I'll be double-darned if I'll leave what is now a 20 inch low spot with ragged edges where there used to be wallpaper 1/8th of an inch thick.  So I kept scraping until my arms were tired, as far up as I could reach.  And then I realized that I have a POWER tool for this.

A couple of years ago I bought myself (yes, and that got the guy in the Orange Apron a little disconcerted also)  a saw.  And not just any saw.  It's an oscillating saw.  They're little, but they are mighty.  I've been the envy of many a teammate on our mission trips because this baby can cut into corners, it can sand, it can cut ceramic tile - it generally rocks.  And it has a scraper blade!  But the saw cannot make me taller, and it can't be attached to a broomstick like a paintbrush can.

So I needed scaffolding.  I thought maybe renting would be good, but the Orange Apron guys don't do tool rental.  So I looked at some ladders that are designed to be used on uneven surfaces like stairs, and bought one. 

Then I realized something.  I no longer have a minivan, and although I have a lot of respect for the roominess of the Accord's trunk, I wasn't sure that a 24 foot ladder (collapsed to about six feet) would in any wise fit into the vehicle.  But by this time the Orange Apron guy is on board.  He's a little psyched to be helping the lady in the pink coat get a spare scraper blade for her way-cool saw, and he's up for figuring out how to make this all work.  And he's the one who discovered what I would have already known if I had glanced at the owner's manual - the rear seat folds down and extends the trunk space into the cab.  A seven-footer wouldn't have made it, but the trunk closed, no problem, over the six foot ladder.

Hubby was impressed.  He likes a good tool, and this ladder is a great tool.  The wall is scraped to the ceiling, save a bit of dry paper that needs to be sprayed with water and scraped by hand.  We'll be ready to paint a smooth wall by Saturday.  Provided, of course, that I can still lift my arms.

This is what I can accomplish when CHOP cancels a test.


Monday, March 11, 2013


Last night, following four or five good nights, was an insomnia night.  I lay awake for a few hours, and then broke down and took a melatonin.  They rarely work, but it makes me feel like I'm at least trying if I grab something. 

Needless to say, it kicked in.  Between the time change and the drug, I slept until 7:30 and awoke feeling like someone had stuffed a blanket in my head.  I woke Babygirl and ran for the shower.  She did the same.

I can't recall the last time I attempted to shower downstairs while someone else was doing the same upstairs, but it was a somewhat more refreshing event than usual.  Despite the lack of hot water, the blanket sensation persisted while I dropped Babygirl at school (Yay!) and ran to McD's for coffee and a McMuffin. 

At any point during my day I could easily have put my head down and fallen asleep, but I have to teach and see patients, so I tried to pull the blanket out of my ears and function.  I think that I at least managed to pretend that I was alert, and by lunchtime I had to admit that it was the sleeplessness and not just the melatonin that was to blame. 

I arrived home to discover that Babygirl had called her dad for a ride home early and had been too ill for her tutor to come in and teach her.  She managed to eat dinner and went to bed right after taking her 7 PM meds.  I beat her to it.

But when Hubby came to bed at 8:30 (we all had a rough night, okay?), I woke back up.  And here I am, wide, wide awake. 

So I've wrapped myself up for warmth and security, in prayer shawls.  Babygirl has a bunch, but now I have two of my own.  Their soft warmth and the love they represent hold me tight and give me a special rest of their own.  If I can't sleep I'll accept the love and prayers of my beloved friends as refreshment.


Sunday, March 10, 2013


My mom needed help with her shopping today, so I opted to skip Sunday School so I could get some housework done.  I figured I'd go to church, take her to lunch and then the grocery store.  At her current pace I knew that it would take most of the afternoon.

Babygirl had gone back to bed after taking her meds, so I woke her up at ten with instructions to be ready to go in 45 minutes.  I continued cleaning like a lunatic, left myself five minutes to get dressed, and came downstairs to find her watching TV in her PJ's.

The fact that I was feeling pressured for time AND chatting with my brother to make sure my mom was up and on her way doesn't excuse the fact that I YELLED at her to get her butt in gear and get ready to go:  "You have SIXTY SECONDS!"

We whipped out to the car and drove to church, arriving with about two minutes to spare.  I parked the car, and then got a good look at her.

Sigh.  She had her eyes covered but it didn't hide the tears leaking out around the edges.  She was clearly hurting in every way you can hurt - head, heart, soul.  I apologised, hugged her tight and drove her home, then came back to church to meet my mom.  I arrived in time for the sermon.

The final hymn was "Great is Thy Faithfulness." 

"Strength for today, and bright hope for tomorrow...."

I need both, and feel I have neither. 


Friday, March 8, 2013

Week Ninety-eight - Not This Month.....

CHOP Nephrology called yesterday and it looks like, because of the delay in asking for anaesthesia services, we won't be able to have Babygirl's kidney biopsy this month.  I do not find this particularly troubling. 

Whatever is happening with her, the antibodies, the possiblilty of rejection, the odds that they are going to be starting new and invasive treatment - it all seems unimportant.  It was, in all truth, a relief to hear that we don't have to go next week (although, now that I think of it, I think I need to call and cancel our clinic appointment and make sure they don't want some lab work done locally). 

What is coming is coming.  What's going to happen will.  Either she's rejecting or she's not, but no part of the treatment they described will undo it.  I'll accept delaying the inevitable by whatever means are available.  But I don't have a huge sense of urgency about it.  I do, however, have a sense of urgency about painting, signing off on my taxes, and restocking at the grocery store, and scheduling court appearances on behalf of my patients.

I have too many things going on to not be relieved when something big and unpredictable gets put off until later. 

Last year, the big, unpredictable thing was the transplant itself, and we would have dropped a trip to Disney to make it for that (ask my family - that's a big deal LOL).  Last year, the unpredictable was good news, excellent news, miraculous news.  Our perspective has changed.  Now unpredictable almost always means bad news, worse news, scary news. 

People ask me how she is.  "She's at school today!"  or "She's home today" are my standard answers.  More than that and I have to begin a depressing litany of how well she isn't doing.  Headaches have dropped from seven per week to four or five.  The kidney is being rejected and I don't have any idea how long that process takes.  The only bright light shining is her daily schooling, so she's less behind than she was. 

And of course there is the very bright light that is Babygirl.  She doesn't whine about anything except having to share the TV with JuJuBee and Boo.  She deals with pain, fatigue, midications and unpredictability with grace and courage.  She finds reasons to laugh, reasons to hope, reasons keep on going,  from some deep well of resilience that seems to be inexhaustible. 

As always, I am deeply ashamed of myself when I see how amazing she is.  I talk about faith, but she simply lives it.


Monday, March 4, 2013


I received a call from the sedation team today.  They reviewed Babygirl's chart and came, unsurprisingly, to the conclusion that she was not a candidate for sedation because of her weight.  The steroids have increased her weight so much that she could stop breathing, so she the referral was sent on to general anaesthesia for scheduling.  It's just one more way that medication side effects are running our lives.

This is hardly big news - if it was true in November, it is true now.  Nothing has changed.  So now another team has to look things over and decide when the biopsy can be done.  Since the anaesthesia nurse had no idea we had a second-choice date, and things aren't looking good for March 14th, I told her that spring break is April first.  That would mean that for the second year in a row we'd have to leave home immediately after Easter dinner and run to Philly.

Such is life LOL.


Sunday, March 3, 2013


The mission team retreat was a resounding success.  Training for the Appalachia Service Project involves attempting to gain some cultural sensitivity, so we reviewed actual applications from people hoping for home repairs.  We had four applications, and had to select only ONE home to work on.  It gave all of us a vision for how hard it is for the ASP staff to make selections, and how incredibly difficult it must be to give the bad news to the people who cannot be helped.  Babygirl joined the retreat after Squeaker's first birthday party because she didn't want to stay alone in the house.  And she had the opportunity to participate as if she were going to go along.

The mission team is not just from our church.  We have people from all over the region, and we may have as many as 28 people going this year - four teams.  But the retreat weekend isn't all about training and trip planning.  It's about welcoming new people to an established group, and I think we excel at this.  So when Babygirl arrived midstream, the other youth just slid her right into whatever they were doing.  Meals.  Training.  Games.  The Fear of Heights hike.  Manhunt.  And basketball.

Babygirl initially sat on the sidelines.  When I happened by,  I asked why she wasn't playing.  "I don't have my kidney guard."

I looked the situation over:  a mixed group ranging from 14 - 65 playing in a small gym, pace not too fast, game not too aggressive.  I made a judgement call and told her she could play.  She's had so little physical exercise since the headaches started I just wanted her to be able to move while she felt up to it. 

The game was hysterical. Silliness was common, cheating was rampant and neither team cared. I wish I'd had a ref whistle just so I could make up annoying foul calls LOL.  Despite the fact that not all of the players knew her history, or would have understood her need for low contact if they had, they built a bubble around her.  She played hard, scored a few baskets, and ended up sweaty, sore, and satisfied.  She then disappeared with the rest of the youth, popping in and out of the game room where some of the adults were playing with other of the youth. 

She stayed up with everybody until 2 AM, and was up before breakfast at 7.  I'm sure she'll pay for it with a headache today, but it will be totally worth it. 

She'll never be able to go on a mission trip because of her weakened immune system.  But she wants to be a part of the "home team" and come to ALL the retreats.  My thanks to the youth of the team for giving her their loving support.


Friday, March 1, 2013

Week Ninety-seven - Snafu.......

I called Philly today for the second time since our last visit to try to confirm the date of the kidney biopsy so I can arrange my schedule at work.  Since the first proposed date is less than two weeks away, I am understandably a bit edgy.

With the first call, I was told that these things take time to coordinate.  I understand that, but it didn't seem to take so long last time.

With today's call, it was apparent that no one has yet attempted to coordinate anything yet.  So the paperwork went to the sedation team TODAY, not in mid-February when we were there.

Ugh.  They'll call Monday.