Wednesday, November 26, 2014

For Thyself Best Gift Divine....

Faith is a mystery.  Why some of us have faith and others don't I have no idea. My parents took me to church when I was very small, but stopped going before I started school.  But somehow, my heart felt at home there, and when I was big enough to walk there on my own, I did.  Despite my many, many flaws I became a doctor to work toward my goal to live the ideals taught by Christ:  Heal the sick, feed the poor, work for justice. 

One of my favorite patients is an atheist.  She firmly believes that since there is no afterlife, one must achieve everything possible in THIS lifetime.  She became a legal aide lawyer to achieve her ideals:  Lift up the downtrodden, work for justice, proclaim liberty to the captives - in other words, to live the ideals taught by Christ. 

Of course, she doesn't see it that way, and might even be offended by the comparison, not that it makes it any less true for all of that. 

If she doesn't believe in any afterlife or higher power, why is she so passionate about the need to serve?  Why do I feel so passionate about what I do when I know 'doing' isn't truly necessary to arrive in the afterlife, given my faith? 

Jesus' life was THE roadmap of what we could become.  He gave, and gave and gave over and over.  He healed.  He reconciled.  He fed.  He taught. He freed.  He set a phenomenal, unforgettable example of what God intended us to be, and sent His Spirit to help us become His hands in this world. 

I was raised in a pretty fundamental environment.  By all I was taught, my patient, despite her life choices, will arrive in hell at the moment of her death.  And those who profess faith in Christ but vote to take food away from hungry children will go straight to heaven. 

But there are those verses regarding separating the sheep from the goats on the basis of "When I was hungry you fed me, and when I was thirsty you gave me drink, and when I was in prison you visited me...."  These things happen at the final judgment, after, I assume, we're dead.  Jesus clearly told his disciples that he had sheep in 'other folds.' 

My faith is pretty broad.  I serve the Lord, not (only) because I hope to go to heaven but because it is the right, just, fair thing.  I have long suspected that on the last day we will be surprised, deeply surprised, by which of us get Sheep awards, and which get Goats.  The Bible says that God did not send his Son into the world to condemn it, but to save it.  In that eye-opening moment when we see what God has seen - "I was sick, and in prison, and you visited me" - we will see what the Gift Divine has accomplished. 

I am grateful for the opportunities my life has given me to serve.

DeeDee

Tuesday, November 25, 2014

And Buds of Heaven....

We are surrounded, although we are rarely aware of it, by people who hold in their hearts the "buds of heaven."  October is National Pregnancy and Infant Loss Awareness Month.  I know, I know, everybody seems to have their 'day' or their 'month' these days.  But October represents a staggering number of people.

If you go to http://www.october15th.com/, you'll see the statistics:  About one in six pregnancies end in miscarriage or stillbirth.  According to the CDC, the US infant mortality rate is 6.1/1000 live births (it drops to 4.2/1000 if you exclude babies born before 24 weeks gestation).  In either case, think about it:  If your high school had only 100 kids in it, 16 kids were missing long before you started kindergarten.  You didn't notice them.  But their parents did.

I've never experienced a miscarriage or the loss of a child, but I've had good friends who have.  I remember the names of the missing children and pray for their parents.  I feel, like many of us feel, helpless in the face of such tremendous loss. 

"I can't pretend to know what you are feeling.  But I'm here if you need me." 

If you know anyone (and I know you must) who has such a loss on their heart, pray for them.  If you have lost a child, I pray for you. 

My gratitude for this day is, that for all we've lost, we've not lost a child. 

DeeDee

Monday, November 24, 2014

Flowers of Earth...

We are halfway through our visits of the morning.  Babygirl awoke with a slight headache, which has resolved.  She is tired, and very cranky, which I am sincerely hoping is NOT a side effect of the Depakote.  The neurology nurse agrees that generating a flow sheet of all medications that could conceivably ever be used for migraine under any circumstances either for maintenance or rescue, traditional, herbal, supplemental or otherwise.  This would be useful for all patients, and also for teaching purposes.  But in our case it would be useful because we would be able to give the entire list to nephrology for clearance in advance of need.

We discussed Botox again.  Babygirl is a bit reluctant to try it, so it was back-burnered for now.  I asked about the Cephaly device (http://www.cefaly.us/) and got permission to try it ($300, not covered by insurance, but well worth the investment if it works at all for either one of us).  The doctor said, "I have patients who swear BY it, and some who swear AT it."  Good to know, Doc, good to know.  He wants to continue the Depakote at a lower dose than the inpatient neurologist recommended. 

All of these things are preventatives.  We still don't have the best plan available to TREAT the headaches as they occur.  Tylenol and tramadol have been ineffective. Migranol was effective briefly.  Imitrex caused chest pain.  So now we've added Reglan and Maxalt (or restart the Migranol with the Reglan) to try, and we are to see if nephrology will clear us for aspirin use (to be avoided at all costs if she is actually ill). 

Flowers of earth.  Botox, Migranol and the aspirin are ancient, plant-based medications.  There is evidence that they have been being used since the Neanderthals roamed the earth, along with foxglove, belladonna, purple coneflower and many other plants that we still use widely in our pharmacopeia today (although it is only recently that Botox has been used for anything other than poison).   More recent development of drugs like Taxol from the Pacific yew for ovarian cancer make scientists keep looking at plants for more potential treatments for diseases.

Our overall disrespect for our planet is costing us medical treatments.  Every time a plant species goes extinct due to habitat loss before we can study it we lose, potentially, the cure for a disease.  Even (and perhaps especially) those plants that we have previously deemed toxic may prove useful if we look at them from a different perspective.  We have take our directive to 'subdue' the earth a bit too literally.

We need to back up, let the planet recover, and be thankful that God put here what we need for our health and well-being.

DeeDee

Sunday, November 23, 2014

Graces Human and Divine.....

 Divine Graces. Forgiveness, love, faith, compassion among them. 

Human graces, the same.  The gentle kindness of our human co-travelers in this life are what point us toward the Divine. 

Babygirl was discharged from the hospital last night, just before nine PM.  They didn't exactly hustle us out - we were offered the option of sleeping over - but Babygirl's headache had drifted down to a 1/10 and she had a suspicion that her second IV site might not hold up for another round of medications, so despite the fact that we both had reservations, we decided to leave.  Unlike our last discharge (which for reasons unknown took over four hours), we were out the door in twenty minutes.  We hiked to the parking garage, and.... the car was dead. 

I checked immediately - the headlights were not on.  But one of the interior lights was - I must have switched it on to look for something when we arrived and forgotten about it. 

We don't have AAA (we keep talking about it and then forgetting to do it).  So I Babygirl and I dropped our stuff in the trunk and hiked back into the nearest building to ask security for help.  "We're dealing with a  bit of a situation, ma'am, but we'll get to you as soon as we can."  It wasn't long of a wait, and a kind guard came and drove us to our car. 

I'm notoriously nosy.  "So...what was the 'situation'?"  "Oh, a chopper came in with a trauma case and a cop.  Emotions run high, you know?"  I mentally translate.  If there's a cop, a parent is likely responsible for the trauma, and the other parent (and/or the grandparents) aren't handling this well.  "You see a lot, I imagine."  "I love my job, but I just made my 90 days yesterday and I've cried twice already." 

He doesn't look like the crying kind. 

The security car has a cool jumper cable hook-up that allows him to wire up to our battery and then just plug the other end into the front of his vehicle without even lifting the hood.  It set off my car alarms when it plugged it in, which made him jump a mile and unplug the cable.  "Was that you?!?"  "It's an automatic anti-theft alarm.  I'll switch if off when it comes on."  It took two more tries (with him jumping like he was being electrocuted each time) before he understood that he had to let it honk for a minute to give me time to turn it OFF.

Maybe he is the crying kind.

The car started without incident (except now I need to find the radio code to convince the radio that no one stole it).  He stayed for bit to make sure we were okay, and left us with a "Have a blessed night!"

Halfway home, Babygirl suddenly said, "My head doesn't hurt AT ALL." 

The fact that we had just made it calmly through what could have been a stressful car breakdown was undoubtedly helpful.  Ask anyone who knows me:  I'm not always good with the unexpected crisis.  The fact that security at the desk didn't do an eyeroll and was nothing but compassionate about it was amazing.  The gentle soul of the man who restarted our car calmed my heart. 

I will say it again:  God has no hands but ours.  I do not always handle the hearts of my fellow-travelers as gently and with as much grace as I might.  I am grateful for gentle reminders that I should.

DeeDee

PS She is still headache-free this morning, and morning is usually the worst.  We have recheck appointments with neurology and nephrology tomorrow morning.

Saturday, November 22, 2014

To Our Race So Freely Given....

Today's been a long day.  Six IV treatments with the DHE and the headache is hanging tough, so they are starting a new medication now. Even as I see the setting sun reflected ever earlier off of the newest of the Children's Hospital buildings across the street, it seems a long, draggy day.

But I have a long list of things I am grateful for today.  I am not these parents:

Overheard in the elevator:  "....and then he coughed, which increases the pressure in your chest, you know?  And a stitch in his heart tore loose and he started bleeding out through his chest tube, and I asked the therapist 'should his nose be bleeding like that?' and she said..."

Or this:  "He's eighteen, just turned this week.  He was born here.  Yeah, we're 'Frequent Flyers'.  I don't know what we're going to do now that he's too old to come here...."

Or:  "We're on day sixteen since they took his appendix out.  The abscesses are still draining...."

Yeah.  We aren't those people, and we aren't any of the many people who arrived by helicopter in the last 24 hours either. 

Sometimes I need to be reminded that my kid is not the only one laboring under the inheritance of Adam. I see the number of moms and dads with the blue 'I-have-a-kid-inpatient' wristbands sucking down coffee like it's a lifeline in the cafeteria at 5:30 AM.  I see sibling groups with matching shirts that say "Team Gabby" filing into the elevator to go visit Gabby with a very tired Grandma in tow.  I can look down into the ER waiting room, never, ever empty. 

Our race was given Paradise.  We traded it for the knowledge of good and evil and gained sickness and death.

And despite that...despite ALL of that, what I see here all around me are people who manage to put off their fatigue and put on a smile and keep walking.  I see moms who stagger out of  kid's room looking like a puff of wind would knock them down forever turn around ten minutes later and go back in singing.  I see peace in the face of struggle.  I see hope.  And I see gratitude.

DeeDee

Friday, November 21, 2014

For Each Perfect Gift of Thine.....

Sigh.

The discipline of using this hymn to outline my gratitude for the month of November has reached challenging heights.  Sitting up in the night with a child in a children's hospital 200 miles from home is always an exercise in maintaining a stiff upper lip.  One of the nurses just asked me if I'm okay - what am I supposed to say to that?

The truth of the matter is, though, that I am better here that at home.  Here, at least, the responsibility of dealing with Babygirl's pain is no longer mine.  Despite the fact that she had pretty bad chest pain from her medications during the night necessitating repetitive cardiac evaluations; despite a one AM I-wanna-go-home crying jag that left us both exhausted, we BOTH slept better last night than we did the night before. 

So where do the perfect gifts lie?

Well.  There is Babygirl herself, who despite her exhaustion and pain remains polite and focused with the staff, which is more than I can sometimes say for myself.  There are family and friends who step up and offer whatever help they can, surrounding us with prayer and love.  There is my job, where people step up without complaint and pick up the slack yet again, dealing with disgruntled folks who are tired of being shuffled around like a deck of cards to accommodate the weirdness that is my life. 

Just because I am weary and sad doesn't mean I'm not grateful.  Making gratitude a discipline helps pull me out of myself and back into the larger world.

DeeDee

Thursday, November 20, 2014

For All Gentle Thoughts and Mild....

I've been short on gentle, mild thoughts lately.  Work has been crazy with the retirement of a colleague. Mom's decline is never pleasant to watch.  Hubby's back pain is no picnic.  But it is Babygirl's headaches that really take it out of us.

Her recent hospital stay resulted in a 100% resolution of her headaches for about five days.  Then a day on, a day off, a day on, a day off.  New medicine working well, then working slowly, then working not at all, until finally she settled back into the chronic daily headache, awakening with a 7/10 pain that would gradually decline to a 3 - 5/10 by the end of the day, but never completely go away, except for one lovely evening for a couple of hours. 

I started calling neurology on the morning of day three of this headache, last Friday.  The nurse called back at lunchtime, said she'd talk to the doc and call back by the end of the day.

Monday morning I called again, and requested again that they please return a call, because day three was now day six.  A coordinator of some sort returned the call and was miffed that I was angry (really? Well, I did say, "I feel like no one gives a rat's ass about my kid."  Cussing at the person who is not at fault is bad form, and I apologized immediately and had to listen to the "you aren't the only one with a kid with headaches" lecture, the immediate Karmic payback for my rudeness), but she promised that she would immediately go to the nurse and that someone would call me by the end of the day.

Tuesday evening I came home from work and sobbed like a child all over Hubby.  He's gotten quite good at just hanging on and making comforting noises.

Wednesday morning I called again (I have an alarm set for 8:30 AM on my phone so I remember to call early in the day.  It is pathetic but that way no one on the other end can say I called too late in the day for them to get back to me.  Not that the time of the call apparently matters in any way). We are now on day eight of a nearly continuous headache and I've waited over 5 days for a call back from a doctor.  Keeping in mind that the poor soul on the other end of the line is not responsible for this, I outline the problem AGAIN.  And I know she can hear that I am crying.  I'm not going to pretend that I'm not.  At 4:40 PM I am with one of my nurses, notice the time, and start crying again because I know neurology goes home at 4:30, so there is no hope of a call,  but I still have paperwork and patients of my own who need to hear from me, so I pull myself together and keep working.

At 5:30, my phone rings. It's the doctor.  I was stunned, sincerely stunned.  I explained, AGAIN, where we are in the process.  It is truly a good thing that there is 200 miles and a phone between us, because his basic excuse is that he needs clearance from the kidney docs before he can try anything new.  I ask what he want to try and he rattles off a list that contains one medication that they have already okay'd, one that she already on, and one that they have already declined.  I point this out to him and he refuses to give her the one they say is okay because HE doesn't like the side effects. 

"Doc, let me tell you something important that you need to know:  My brother took one of those silly online how-long-am-I-going-to-live quizzes and it gave him 46 years.  He said, 'Why would I want 46 more years?  Give 'em to Babygirl!'  Babygirl said, 'Why would I want them? My life sucks!' "

There was a pause.  "Do you want me to readmit her to try to stop the headache again?"  "Yes.  Tell me when you want us there."

I skipped Bible study and choir rehearsal to finish every phone call and piece of paperwork that could be finished.  And this morning we are here at my sister-in-law's house, waiting for a call from Bed-and-Board to tell us when a room is available. 

Stopping the headache is only one step.  They HAVE to find something to keep it from coming back.  So I'd be very thankful if all of you would send your thoughts and prayers our way.

DeeDee