Friday, October 31, 2014

Back in the Light...

Two adorable Ninjas just left my house:


Now I'm being inundated by little Elsa's. 

It's good to be home.

Babygirl is still headache free, and she an I spent much of the day outdoors, without sunglasses, raking leaves an tearing down the garden.  We harvested 30 pounds of green tomatoes. We found some lettuce hiding beneath them, one lonely cucumber clinging to the dead vines, and a dozen peppers.  There are still herbs, kale, and broccoli out there but they are all frost tolerant ones. 

I'm exhausted.  Nearly 800 miles of driving, four nights in beds that aren't my own (two on a pull out chair smaller in width than the average coffin and likely less comfortable).  Three nights with a kid who was so overhydrated that she needed to get up at least once an hour, unplugging the IV pole (conveniently plugged in directly above my head for one night).  One night with the IV beeping every half hour.  Loudly.  I think it might be kinder to just keep someone up all night than to let them think they just might get some sleep.

It was worth it.  It was worth it to see the nurses and doctors suddenly see my Babygirl emerge from under the blankets, out of the dark, into the land of the conversant and confident. 

And I have to tell you, being in a place that 'gets' what it's like to have a headache is amazing.  NO one comes in loudly.  NO one comes in and flips on a light, ever.  The dimmer switches were an awesome, amazing thing, making it possible to go gently from dark to light as tolerated.  And having window blinds that allow you to let in only as much light as you can bear is a gift beyond price.  Babygirl has been living in the dark with her headache for the better part of 6 weeks. 

Praise be to God for the Light.

DeeDee

Wednesday, October 29, 2014

The DHE Miracle....

They've run a ton of crap through that little IV.  Saline.  Methylprednisilone. Reglan. Benadryl. Depakote. And finally, this afternoon, DHE.

They had considerable trepidation about using this drug.

Dihydroergotamine is an derived from an old, old drug.  Ergot alkaloids have been in use since the cavemen discovered them in fungi growing on rye seeds (http://en.wikipedia.org/wiki/Ergot).  Historically they were used to induce labor, and to treat severe headaches.   Because the sumatriptan caused her to have chest pain, and ergot can cause similar side effects for similar (frightening) reasons, there were concerns that there might be some underlying cardiac issues (oh for the love of all that's holy look at the kid's chart! she's had TWO full negative cardiac workups in less than 3 years, the last less than 6 months ago), so they had to call cardiology.  Nephrology had already cleared the drug, so once we got the final go ahead, they put it up.

Within an hour she was headache free.  The sunglasses are off, the lights are on, and she's getting restless and actually having conversations.  They are hanging another dose at midnight, and reassessing the situation in the morning.

Headache free is a blessing.  It isn't out of the woods, exactly, but it's a good start.

DeeDee

PS Oh, and the medical student did manage to make a fool of himself on rounds.  I did my best not to point it out but the attending neurologist was not so kind, poor kid.  Ah, I do not miss those days at all.

Tuesday, October 28, 2014

Coctail Via IV.....

After making the 384 mile round trip to and from CHOP Sunday and Monday, I got up and checked on Babygirl this morning, hoping against hope that she'd be all ready for school. 

Not so much.

The headache recurred at about one AM, meaning that she got less than 12 hours of relief from a procedure that I'm willing to bet we'll pay over $500 for. 

Did I mention that her Medicare is up this month?  Yeah, pretty sure.

Rather than wake me so we could start rolling back to Philly on 2 hours of sleep (sensible child) she waited until I got up.  I cleared some work while I had a quick breakfast and hit the road.  At 8:30 I called (hands free!) to let Philly know we were on our way, ETA about noon.

We got a bed on the neuro floor, a new place for us.  The nurses were not at all put off by the sunglasses, the room lights are all on dimmers, and the window shades are adjustable up to three layers thick. 

The neuro fellow is a Dr Christian, who, if the scar on his neck is any indication, has been in the fellowship of suffering himself a time or two.  His third-year (translation: freshly-hatched) medical student was about 3 steps above average and managed not to make a fool of himself even once.

That being said, she is a significant anomaly on this floor. They simply do not know what to do about the transplant and are, thankfully, tripping over themselves being hypervigilant about it.  It took until 5:30 to start the first of what I think will be a graduated run of 6 different medications aimed at breaking the headache. 

I'm sure they'll succeed.

What I'm not sure about is how they plan on keeping it gone.  And to judge by the looks on their faces when I pose this question, I'm guessing that this is not the first time they've been up against this.  And they don't likely have any really easy answers.

DeeDee

Monday, October 27, 2014

Nerve Blocks.....

After two years of headaches that range from annoying to unrelenting neurology finally called us down to try nerve blocks to break the most recent run. 

Nerve blocks are basically the application of a local anaesthetic to a nerve, like when your dentist numbs a tooth.  You can do small area, or a really big one depending on the nerve you are aiming for.  Epidural anaesthesia is one form of nerve block, and in that case you can hit up to 10 nerves at a time, numbing everything from the waist down, or just one nerve, numbing part of one leg.  I wasn't entirely sure what they were going to be aiming for here.

They offered a sedative ahead of time (and finally got it phoned into the CVS nearest my sister-in-law's house).  I was quite surprised by the dose: Ativan at 2 milligrams is pretty hefty. I order 0.5 mg to sedate a grownup, but hey, maybe they know something about how badly these shots upset a kid, so I give her the pill as we are leaving for downtown.  By the time we arrived at CHOP she was drowsy and more than a little cranky.  The nurse went through the risk/benefit talk, and explained that we don't know how or why it works.  I responded that at this point it doesn't much matter if they come in with grass skirts burning incense and waving maracas.  I need Babygirl better.

The doc explained the process and asked her where the pain was.  Since it was all in the back of her head, that was where the shots were to go:  Four of them, each with one injection to be fanned out under the skin.  Then the doc started looking for anatomical landmarks.

Take a moment and feel the back of your head, where the neck meets your skull.  The bones behind your ears rise up and meet above the center of the neck, and there's a bump on the back of your skull like the keystone of an arch.  Locating the nerves is done by touch, based on these landmarks.

Babygirl doesn't have them. 

When she was born in Guatemala, her mom knew that she wasn't going to be able to raise her.  She had already had one baby, and he was being raised by his father's parents.  She didn't want her Babygirl to go the US adoption agencies and leave the country, so she gave her to a local family.  She came back a few months later to see her, and found Babygirl lying on her back, starving and nearly dead.  With no remaining choices, she took her back and went to the agencies.  Most of them turned her away because they thought Babygirl was too far gone to save, but one agency took a chance, put her in the hospital, fed her up, and she ended up becoming MY Babygirl.  But one result of this history is that the back of her skull is completely flat.

It made the neurologist's day more challenging.  He figured it out.

Her scalp completely numb, she lay down and fell asleep for two hours.  When she woke up she was hungry, thirsty, high as a kite and some teen-girl place far beyond cranky.  The first time she stood up she would have fallen down if there hadn't been a chair behind her.

The doc discharged us.  We are to come back for admission if she gets a headache again this week.  Aside from that, what happens next is anyone's guess.  Nerve blocks work not at all, immediately, for a few hours, for a few days, for months, no one knows in any one patient.

Watching Babygirl try to select coffee was entertaining. We had to go through the line twice for her to make up her mind and she was purely evil.  It was a relief to have her pass out in the car, so I drove all the way home without stopping. 

It took a leap of faith  to even consider leaving Philly without being sure she wouldn't have another headache.  But...what it she wakes up tomorrow without one finally and can go to school?  I have to have her here.  Hope is thin, but it's hope nonetheless.

DeeDee

Sunday, October 26, 2014

Philly Rerun....

Babygirl had blood work done on Tuesday to see if the kidney has recovered from the most recent headache medication.  It has, mostly.  So when I finally got the results, I contacted the headache docs to let them know that, once again (or still, depending on one's perspective I suppose) we are in headache hell).  Babygirl's most recent trend has been headaches that begin about 3 PM, keep her up all night, and end at 10 AM.  I am beginning to get calls from the school, since she is neither attending nor able to meet with her tutors.

The headache folks began the debate on Thursday morning with the usual:  What's she tried?  What does nephrology say is okay to do?  What do you mean, she isn't going to school?? I'll call you back routine.  Among the discussed choices is the option to bring her in for outpatient nerve blocks and admit her if they don't work.  I tell the nurse that I think that this is a grand plan, but this isn't my first hayride, so please don't admit us on a Friday so we can sit in a hospital all weekend and do nothing, 'kay?   Good point, she admits.

By Friday at noon it is agreed that she is having nerve blocks at 1 PM on Monday.  My office manager clears my schedule for Monday, and, just in case, Tuesday.  The nurse tells me that they will call in a sedative for her to take before the procedure.  I suggest that they consider trying another rescue medication over the weekend as well, since the one they gave her to try a few weeks ago worked but had intolerable side effects.  I also point out that our pharmacy closes at 6 PM so she needs to make sure that this stuff gets done before then. 

At 5:30, I'm still at work, so I call Hubby to do the pharmacy run, and , Oh Happy Day, there is a prescription there for her!  The fact that it I later discover that it is the asthma medication I called for earlier this week was less happy news.  I'm still trying to figure out how I want to work around that one.

We'll be leaving this afternoon. I'm re-packing that toiletries bag. Say a prayer, will you?

DeeDee

Friday, October 24, 2014

Ebola Training....

I get asked every day about Ebola.  Am I afraid? Should people worry?  Is it going to kill a lot of people?

My standard advice? 

Last year, no one in this country died of Ebola, but about 30,000 died of influenza.  Quit smoking and get a flu shot.

People seem genuinely surprised and unimpressed by this advice.  The fact that more people die of bee stings than rattlesnake bites somehow does not make people less afraid of rattlesnakes does not escape me.  I get it.  Ebola is like a bucket of rattlers.  On steroids.  On Fox News.

Sigh.

Over the years I've seen a lot of my doctor colleagues die young.  Cancer seems terribly common.  Heart attacks, once in a while.  Suicide, far to often.  A tragic accident, not too long ago.  And a couple of years ago, the Swine Flu got one of us.  Just. Like. That. 

We see diseases, we catch diseases.  I've been hospitalized for meningitis. I've had my share of influenza in the past and get my flu shot every year now.  I've caught strep throat and colds and scabies.  You can't avoid everything, and if a baby sneezes, they sneeze, right? 

I can't speak for my colleagues.  I wash my hands.  Wear protective gear when I need to.  Use gallons of hand sanitizer.  Clean my stethoscope between patients.  But honestly, my lifestyle of sleepless stress, laziness and donuts is more likely to get me than anything I catch from a patient.  Wasting an hour of my week on Ebola training seemed pointless.

There is, perhaps, and odd level of denial mixed with commitment that allows doctors and nurses to do what they do.  Carried to its highest level, the Doctors Without Borders travel to places where they are almost guaranteed to be exposed to either deadly disease or gunfire in the name of providing healthcare.  We aren't afraid, like tightrope walkers aren't afraid, like stuntmen aren't afraid - it's just a job.

Quit smoking.  Get a flu shot.  And remember: HAVING a gym membership is not nearly as good for your health as USING your gym membership.....

Rare viruses are not on the list of things you should be worried about at this point.

DeeDee

Wednesday, October 22, 2014

Scut......

Scut is term, leftover from medical residency, referring to any list of unwanted tasks, as in:  "What kinda scut's on your list?  I have 6 IV starts, 2 EKGs, a STAT blood draw and that infection in room 202 needs another new bandage...."  It's a list of the stuff they make students do all night long, or at least they used to, as a form of convoluted payback for the privilege of paying money to stay up all night trying to learn how to keep people from dying by being sent to do useless scut while people who already know something keep people from dying.  I remember being told it was an acronym for 'Some Common Useless Task." 

This should, of course, be differentiated from a 'Learning Experience'.  A 'Learning Experience' was doing something that NO ONE would ever want to do, as in, "Hey, let's have the student figure out how to get the maggots out of that drunk guy's leg wound.  That's a REAL "Learning Experience!"  In this case, scut might be translated, "Some Common Unpleasant Task." (And the kicker at the end of THAT particular 'Learning Experience' might be when the chief surgical resident explains, with some degree of asperity, that he would like you to leave his maggots where they ARE thank-you-very-much because they were doing a great job of debriding the wound and YOU just made his job that much harder, you moron.  And then you realize that the guy who gave you this 'L.E.' knew that, the effin' bastard.  Yes, this is how they train doctors.)

What, you ask, brought on the reminiscent ranting?

When I left work at 6:30 last evening there were 13 'tasks' left on my computer.  When I arrived at work today at 7:45 AM there were 57.  This does not include the 40 charts I need to review for my NP and my PA.  These do not include the stack of disability, school physical and handicap sticker request forms on my desk, nor the inch-thick stack of lab and x-ray reports that need to be looked over.  It doesn't include all the billing forms that patients walked out of the door with last month that I need to look up a note for, rebill and sign.

I saw about 20 people today.  I took about 10 minutes for lunch, and I'm pretty sure I made it to the  bathroom a couple of times.  There were two empty cans of seltzer on my desk, and an open jar of peanuts, so I clearly took fluids and nourishment.

But I kept tabs - I always do, to some extent.  I cleared over 150 separate tasks - chart notes, prescription refills, recommendations to the worried well (no, really, you won't get Ebola at Walmart), deciding if that fall from a crib warrants an ER visit, adjusting medications for Hospice patients - finally getting to the bottom of my in box for the first time in weeks.  There are still 15 tasks on the computer list, the 40 charts still need review, and about 5 more forms.  I left at 7:30.  And I get to do it all again tomorrow.

I guess there are differences between then and now.  Now, it's 'tasks' and not 'scut'.  And I'm paid to do it instead of paying to do it.  And I get a little more sleep. 

But I can't say it's an awful lot more fun.

DeeDee