Souvenirs

I want to take these patients home with me.  If I could just smuggle a few of them back into the US… the problem is that the numbers are growing.  At first, there was one little boy that grabbed my heart.   Last week, I wanted to take 2 home.  This week, there are 5 that definitely need to come.  And today, another one has me wrapped around his little finger.  How is this ever going to work with the 50-pound weight limit on baggage?!?!  (And that whole need to breathe thing…)  In all seriousness though, I don’t know how I am going to leave these beautiful children here.  There are a few that are total mysteries to us and I KNOW that just a few hours in the UMass ED could provide all of the answers that we need and get them started on an effective treatment plan.  It is so frustrating.

I think about this every day here.  I ponder how I can do more for them.  But, most of the time, I come up with crazy ideas that just aren’t realistic.  But, this idea just might work!     

We have two patients that are being treated for TB based on “positive” chest xrays, but aren’t having much response to treatment.  Honestly, I am doubting the diagnosis…. And it is killing me to see these kids take their meds every day and continue to waste away.  One of them is actually getting very sick now.  Issac is a 5-year-old boy with fevers, generalized lymphadenopathy and edema and skin nodules everywhere (growing by the day).  He either has a drug-resistant strain of TB or has lymphoma or some crazy tropical disease.  James is a 4-year-old boy with fevers, generalized lymphadenopathy, hepatosplenomegaly, and wasting.  He is holding his own for now.  Back home, we would biopsy these kids on day one and send off a slew of labs (CBC please!) and have a diagnosis in no time.  Here in Liberia, they sit on the ward and pray that we are treating the right thing.  I can’t do that anymore. 

So, I proposed that we get the surgeon here to do a biopsy that I could take back home to have examined by a pathologist at UMass (there are no pathologists here).  At the very least, perhaps we can get a diagnosis.  If we see granulomas, great.  We can continue TB treatment… or tweak the treatment for drug-resistant TB.  If we see lymphoma, then I will have some work to do.  Because currently, we only have a Burkitt’s lymphoma chemo protocol… but, I am sure that we could come up with something to give this kids a chance at life. 

I talked to one of the Liberian surgeon’s here about doing the biopsies.  I had to tug on his heartstrings a bit (I made him meet me on the pedi ward and introduced him to the kids.  Who could possibly say no to them?!?  And, he agreed to do the biopsies.  I insisted that I be there in the OR and told him that I would be happy to do the anesthesia for the procedures (we have no anesthesiologists here… only nurses… and I don’ t really know how much experience they have with kids).  He smiled as I explained to him how fond that I had become of these children.  He has children at home.  He gets it.

What ensued over the past 2 days is just too crazy and long to type out.  But, in the end, I got the biopsies.  The patient’s did great.  And I now have lymph nodes in formalin to take back home.  So, I am sort of taking a couple of patient’s home with me.  Souvenirs.  Gross. 

The pictures below are of James (top) and Isaac.  Isaac smiles very infrequently because he is usually in a lot of discomfort.  The fact that he is smiling in this picture makes me SO incredibly happy. 

     

The Apple Doesn't Fall Far From the Tree

Some people say that I have a Type A personality… others say that I have a touch of OCD.  I just think that I take after my mother, a librarian, who likes to have things neat and orderly (she alphabetizes our videos at home and can produce a instruction manual for an appliance that she purchased 20 years ago in the blink of eye.  She’s good.  Real good.)  So, when I saw the charts on the wards at JFK on my first day 2 weeks ago, I began to have palpitations and sweats just looking at the disarray.  The charts were a mess.  A disaster really.  Paper is difficult to come by, so nurses and doctors write notes on half a sheet of paper.  There is no “orders” section… you just hope that the nurses read your note and carry out your plan.  In fact, there were NO sections of the chart at all!  It was just a big mess of ripped and crumpled sheets of paper stapled together.  In short, it was my absolute nightmare.  Just to figure out if a patient had a fever overnight would take me a full 5 minutes.  A patient’s weight?  Another  5 minutes.  Yesterday’s doctor’s note?  Tick off another  5 minutes.  The medication log? We’re going on 20 minutes now and I still haven’t set hands on the patient!  AHHHHH!!!

When I told Trish and Terry about my frustrations, they laughed at me.  Literally.  They thought it was really cute and funny how my OCD tendencies don’t really fit here in Liberia.  Ha.  On day 2, my blood was boiling trying to dig through these disasters that they call “charts”.  So, on day 3, when Terry came to the wards to round, I was eager to show him just what I was going through. 

“What patient should I start with?”, he asked.  I kindly pointed to one of the patients that had been on the ward for about a month.  A patient whose chart was particularly horrific.  “You can start with him”, I said.  “He’s a real puzzler to us.”  Which was the truth, for sure.   He began fumbling through the chart.  Scraps of paper were everywhere.  About 15 minutes later, exasperated and sweating, he said, “These charts are terrible!  I can’t find a thing!”.  HA!  I started laughing.  He finally saw things through my eyes. 

I told Terry that I really wanted to fix the charts.  He promised to fund whatever I could do to help.  Before he left Liberia, he actually went around town and found me charts and dividers!    (Not easy in Liberia!)  So, for the last 2 weeks, I have been gradually re-making charts.  The nurses LOVE them!  Their work is so much easier now!  Rounds take a quarter of the time.   I even managed to find some plastic bins at the market place to put the charts in.  (Again, these things are impossible to find here… and I paid a pretty penny for them.  But, they are SO worth it!) 

Take a look at the before and after shots.  I am hopeful that the charts will stay neat because the nurses are totally on board.  They are so grateful.  When nurses come from other floors, the pedi nurses are actually showing off their charts proudly.  It’s really cute.  One teeny step in the right direction…

Group Therapy

My experience here at JFK has been quite different from the other residents that have come because there are no Liberian med students or interns here this month.  Med students are taking exams (they take a whole year’s worth of exams in 1 month… ick!) and interns are on break.  Also, Emmanuel, the only pediatrician in Liberia (hired by HEARTT) has been busy with med school curriculum stuff and whatnot…. So, he hasn’t really been around.  This has left me and the 2 Liberian “residents” to round on the ward and NICU daily.  Holy lot of patients.  (30 on the ward, 30 in the NICU/Newborn nursery).  When Trish was here, she and Michelle (a Pedi ED fellow) rounded in the NICU for a couple of the days… thank god.  Then, of course, there is the ED.  Michelle was in the ED, but just left yesterday.  There are usually anywhere from 10 to 18 kids admitted to the ED.  Yes, I said “admitted” to the ED.  Strange, eh?  The average length of stay in the ED is about 4-5 days.  There simply is no room for these kids on the floor.   On the floor, we mostly get kids that get directly admitted from the OPD (Out Patient Department), which leaves no room for the kids in the ED.  It’s probably better off that way because the nurses in the ED are better with acute care.  So, the ED is really the ED/ICU… sick, sick, sick patients.  Sicker than any that I have ever seen in my life… by far. 

But, yesterday, help arrived!!!  Alan and Kristine flew in 2 days ago!  For those of you that don’t know, Alan is an amazing NICU attending who has been to Liberia 3 times now.  On this trip, he decided to bring one of the NICU nurse practitioners to work with the nurses.  Kristine was totally up for the challenge and is making Liberia her first international health voyage (just like me!).  I have been anxiously awaiting their arrival to see what they thought about the NICU here.  It is nothing like the NICU at home.  We have no ventilators.  There is no CPAP.  We can do nasal cannula O2… but on two babies only with child-size cannula (we don’t have infant-size cannula here).  It seems like every baby gets placed on Amp and Gent regardless of the risk factors.  (They put infants on antibiotics for meconium, vacuum deliveries, prolonged rupture of membranes without other risk factors.  It’s interesting and I don’t understand it.)  The problem is that we don’t have cultures or CBCs here!  So, there is no such thing as a 48 hour rule out.  Once a baby is started on antibiotics, when do you stop them???  We also only have 1 bili light.  So, when 5 or 6 babies have jaundice, you have to line them up in a row and decide which babies need the light more.  (We can’t check bilirubins here either.)  The other babies get wheeled over to the window for some sun.  My first week here, we had a full term jaundiced baby die… that would never have happened at home. 

Alan and Kristine went right to work.  Kristine is fantastic with the nurses here.  They love everything that she is teaching them.  The NICU nurses here are actually already the best nurses in the hospital… so, having Kristine around to empower them with more knowledge is just awesome.  The NICU has some  pretty nice, new equipment (we have a warmer and 2 incubators donated from Japan), but the nurses didn’t know how to use them!  So, the babies were being roasted in the incubators with temps too high.  Alan and Kristine figured out how to use them and have taught the nurses too!  They took a bunch of infants OFF of antibiotics and reviewed the guidelines for when to start antibiotics and how long to continue them.  As for the problem with only 1 bili light… Kristine fixed that one too.  She managed to cram 5 babies into one incubator for phototherapy!  (At home , there is only one baby in each incubator.)  She calls it “group therapy”  : )  I love it!  And, Alan came up with some quick and easy eye shields for the babies using some tape (babies need to have their eyes shielded from the light.  But, we don’t have any eye shields here.)  Thank God for them.  Having them here has been wonderful.  It has given me a bit of a break… and more time to focus on the ward patients.  It’s also such a life-saver to have other HEARTT people here.  We have our own “group therapy” every night at dinner… sharing the day’s difficult and wonderful moments over a carefully chosen dinner selection.  (haven’t gotten sick yet!  Fingers crossed!)

No More Suffering

When I arrived on the wards this morning, I saw that Jeff’s bed was gone.  I breathed a silent sigh of relief.  I took my bag off and began looking for one of the nurses.  Then, I noticed Jeff’s orphanage mother sitting near the nursing desk.  I went over to see if she was OK and she stood up and said that Jeff had passed around midnight, quietly, in his sleep thanks to the medication.  I reached to give her a hug and she told me that they had taken his body to the morgue around 1AM, but she had waited here on the ward to see me.  She thanked me for everything that we had done for Jeff.  She wondered if I would be able to come to the orphanage to examine the other children and make sure that they were not sick.  (I had told her on admission that they should all be brought to the clinic at some point for a checkup… mostly b/c I was concerned that there could be another child as sick as Jeff was there.)  But, there are 75 children there!  And I am the only pediatrician left… but, perhaps I can try to get there this week to at least do a quick screening.  She told me how this was the first death that they had had at the orphanage.  She was struggling with how to tell the other children.  At this point, I couldn’t hold it in any longer.  My eyes started to well up.  (I have only cried twice so far here…. That’s pretty phenomenal).  I told her that Jeff was in a much better place now, with his family, and a healthy body.  No more big belly.  No more yellow eyes.  No more swollen feet.  No more suffering.  She nodded in absolute agreement.  They don’t teach this in medical school…

Joy Makes the World Go Round

One afternoon, Atimah (the HEARTT director), arranged for all of us volunteers to go on a trip to his aunt’s boarding school in one of the villages outside of Monrovia.  I was excited to get to see more of Liberia, so jumped at the chance.  We piled into 2 SUVs and off we went into the countryside.  We were on paved roads for the first 40 minutes, but then that luxury was taken away and we were bumping along on dirt roads for another 20 minutes or so.  (Note to self… don’t complain about potholes ever again.  At least the roads are paved.)  The trip was awesome!  My eyes were glued to the window the entire time. 

We were all astonished with how these people live.   Houses made from dirt, leaves, and sheets of metal.  People sitting outside in bits of shade to get some relief from the beating sun.  Monkeys chained up as pets.  Everyone with something to sell on the side of the road:  bananas, pineapples, old clothing, gasoline, etc.  Such a different world. 

I have been so angry with how long people wait to come to the hospital.  (The children are often on death’s doorstep when they are brought to JFK.)  But, looking at how they live, it is a wonder that they can get to JFK at all!  These people in the countryside don’t have cars, medicine or money.  They are working as hard as they can just to have food!  I envision a child getting sick way out here and the parents not knowing WHAT to do.  They probably talk to their neighbors, their local African medicine men, and pray.  They likely don’t have a choice in the matter.  Until their child is so sick that they can collect money to get transportation and make it to the hospital.  For me, these children’s stories start when they enter the Emergency Room… but, for them, it has usually been going on for a long time. 

There are some pictures below from the ride out.  A couple of them were taken closer to the city at a market place, bustling with activity.  My favorite part of this field trip was having the chance to see WELL children.  This picture of these 3 little boys jumping up and down waving is one of my favorites.   They were so excited to see us in their village!  They were so full of joy over the simplest thing:  visitors!  There is no doubt in mind that this kind of joy is what makes the world go round.  It makes life worth living.  Their smiles are absolutely infectious.  : ) 

Surgery

I have been lucky enough to share my time here with some truly amazing HEARTT physicians.  During my first week here, a surgery group from Yale was at JFK doing general and colorectal procedures.  There were 2 attendings and 3 residents.  They did an insane amount of surgeries, managed the surgery inpatient service,  AND saw patients in the surgery clinic.  They worked their tails off!  They did such great work here and were really great people (Yep, nice surgeons.  Awesome!) 

The ORs at JFK are actually the nicest part of the hospital.  I was really impressed.  They look like the old ORs at UMass… not too shabby!  But, their surgeries still have many limitations.  Procedures aren’t really “sterile” here… more like “aseptic”.  There are no ventilators, so patients need to be bagged through the entire case by an anesthesia nurse.  And, of course, there is the fact that the power at JFK goes out many times a day (lasting from 5 min to 30 min).  I was curious what they do when the power goes out.  “We put our head lamps on and keep cutting!”, one of them told me.   Can you imagine what a fiasco it would be if the power went out at UMass?!?!  Unreal. 

The surgery team left today.  Dr. Knight (one of the attendings) did a biopsy of a 20-year-old boy with a giant facial mass.  It really looks like Burkitt’s Lymphoma.  Fortunately, we actually have a pediatric chemo protocol for Burkitts here that works well.  So, he is taking the biopsy back home for the pathologist to look at it (there is no pathology here).  Then, he will email me with the results.  If it is Burkitt’s, I will be able to start him on treatment next week!  We are all very hopeful. 

Palliative Care

On my 2^nd day at JFK, a 14-year-old boy, Jeff, was admitted from the OPD (outpatient department) with liver failure secondary to Hepatitis B.  They had placed him in “private room” (a room half way down the hallway without a nurse) due to his Hep B.   Pause.  Yes, the children with pulmonary TB are placed in the middle of the ward room next to the chemo kids…. But, the boy with Hep B is quarantined to another room.  (For those non-medical folks reading this, Hepatitis B is only transmitted by blood and body fluids.  There is no reason to isolate such a patient.)  Jeff had contracted this disease from his mother during pregnancy.  His mother, father, and brother have died of Hep B already…. leaving Jeff as an orphan since the age of 6.  He has been living at an orphanage with 75 children until last week when he was finally brought to JFK with massive ascites, jaundice, abdominal pain, and epistaxis.  Essentially, he presented to us with end-stage liver disease.  We managed to get him lamivudine-tenofovir (thanks to Terry Flotte’s persistence and Katherine Luzuriaga’s consultation), but we knew that it wouldn’t do much.  Still, for a week, Jeff was comfortable on the ward (we managed to convince the nurses that he wasn’t contagious) and we were considering discharging him.

Sadly, Jeff is now not doing very well.  A few days ago, he started to complain of severe abdominal pain, so I began treatment for SBP (spontaneous bacterial peritonitis) even though he had no fever.  Then, 2 days ago, he had 2 episodes of coffee grounds emesis and the severe abdominal pain continued.  His pain is very difficult to treat:  paracetamol (Tylenol) is no good for the liver and ibuprofen will worsen his GI bleeding.  Also, neither would be strong enough for the pain.  My only option here was morphine.  Trying to get morphine in this hospital is almost impossible... but, I have been personally calling the pharmacist about 5 times a day in order to get Jeff the pain medication that he so desperately needs.  (On my Liberian cell phone b/c there are no phones in the hospital.)  It has been absolutely heart-breaking to see him lying in bed wailing and crying out in pain, while the nurses, parents, and patients sit by and do nothing to help.  They look at him and act like he is already dead, despite his wailing and pleas for help.  Their response to his crying out is bizarre.  They react in such different ways here.  He is comforted when someone holds his hand or rubs his belly, so I have been encouraging his caregivers and nurses to do that for him and I think that my modeling is finally catching on.  Yesterday, I inserted an NG tube and it poured out about 200 cc of coffee grounds fluid.  We also did a therapeutic paracentesis yesterday in the hopes that it will make him feel a little more comfortable.  I spoke with Michael (the adult medicine HEARTT attending here) b/c he has treated much more Hep B cirrhosis than I have (Jeff is my N of one), and he feels that we are doing everything we can for him here and he has no additional recommendations for treatment. 

I am just heading in for rounds now and I pray that he had a more peaceful night last night.  I was able to beg the pharmacist to leave some additional doses of morphine for the overnight shift.  Morphine is a controlled substance here, so the pharmacist doesn’t like to leave it on the ward.  When I explained to him that my goal for this patient was now palliation, he nodded and gave me a dose of morphine.  When I called him back about 5 hours later for more, he was a bit annoyed.  He came to the ward and asked me why I needed more morphine.  I was angry, so I pulled him out into the hallway.  “This boy is dying and there is nothing I can do about it except for give him a peaceful death.  So, PLEASE, can you just make an exception and leave some extra doses of morphine so that he can sleep in peace tonight?”  His face dropped and his eyes widened.  “Oh!  I didn’t realize that!  Of course.  How many doses do you need?”  I breathed a sigh of relief.  He obviously had not understood me the day before when I said that my goals of care were palliative.  Palliative care is non-existent here in Liberia.  Not the medications, nor the mentality in the staff to carry out such care. Yet another area that needs to be tackled.  Any volunteers???