Tuesday, February 3, 2015

Habari rafiki,

Leland often says that life does not go in a straight line.  When we left for Kenya on August 31, 2010, we thought we would stay 2-3 years.  Once there, we realized that establishing a functioning pediatric neurosurgery service, one that gave excellent care to the children, provided teaching to residents and fellows, and was an expression of the love of God, might take 6 years.  That time frame was our basis for saying we planned to leave Kenya on September 1, 2016. 

Instead, life happened. Leland’s chronic fatigue syndrome, more accurately referred to as myalgic encephalomyelitis, has made it impossible for us to continue our work in Kenya.  We returned to Kijabe on November 1, 2014 to provide coverage for Humphrey during his month-long vacation (during which he was married) and for Veronicah, our clinical officer, during her annual leave, train another person to fill my role, and say goodbye to so many cherished co-workers. 

Even that did not go as we had expected; Veronicah, who had worked with us for 18 months, went on her annual leave in December as expected—but during her annual leave, applied for and was accepted as clinical officer for the women’s ward.  So, she never returned to pediatric neurosurgery.  Fortunately, a highly motivated nurse, Elizabeth Njoroge, became a phenomenal addition to our team.  She has amazing initiative—she went home each night and read a chapter from the Neurosurgical Nursing book sent to her by Andrea Strayer, a nurse practitioner at UW with whom we worked at U.W..  It would have been ideal for Veronicah to have mentored Elizabeth after I left—but as we all know, life is not ideal.  I have full confidence that Elizabeth will shine in her new role.

Our last 2.5 months in Kijabe were full ones—we worked harder than ever (did not take our usual Wednesday half-day breaks).  Leland was on-call over Christmas and New Year’s Day.  I think everyone in Kenya who had a shunt malfunction had it over Christmas—on Christmas day and the day after (Boxing Day in Kenya), he did three emergency shunt revisions.  We had great help during Humphrey’s absence in November when Dan Curry from Texas Children’s Hospital came for 3 weeks.  His service allowed Leland to rest between rounds and the operations he performed.

Leland and I had time last summer to think objectively about the provision of neurosurgery to children in Kenya.  After careful review of our data concerning outcomes and with the help of Ivan Stewart, the former executive director of Bethany Kids and a palliative care physician, we developed guidelines for care.  Upon returning to Kenya and facing the impossibility of one neurosurgeon caring for up to 40 children, we prayerfully and thoughtfully refined those guidelines and presented them to the medical staff in our last audit.  These are developed as guidelines, not as rigid rules. 
--the census will be limited to 20 patients, including adults
--non-urgent cases will be housed in the BKKH guest house until a bedspace becomes available.  Elective cases will be scheduled as time allows.
--patients whose care would be futile will not be admitted.  Instead, counseling will be provided to the family.
--patients with severe malnutrition will have nutritional counseling and be discharged until a target weight is achieved.
--for children who arrive with pus in their ventricles, the family will be counseled and sent home.  The chaplain will be involved with the family discussions.
--children with multiloculated hydrocephalus will be offered a transverse shunt with or without endoscopy as a one-time treatment.
--use of antibiotics will be driven by culture results; the use of meropenam should be exceptional and requires approval by the team as a whole.  Vancomycin should be used sparingly.
--for children with hydranencephaly, the options of no treatment, choroid plexectomy or shunt will be offered.  If any surgical intervention fails, no further treatment will be offered.
--consideration of the prognosis should be part of the admission process, daily treatment plan, and be revisited as the status changes.  The chaplain should be involved as early as possible to counsel mums of patients with grim prognoses.

It is hard in any setting to ration care.  We believe that it is God’s will that we continue to offer care to children who are poor and to those who have disabilities.  But we also believe that offering care in cases of futility is not merciful or just; we need to be more mindful of our staff and the sustainability of our practice.  What Humphrey, Leland, and I have done over the past 4 years is not sustainable—not for two neurosurgeons and certainly not for one.  We were encouraged that we found great support for these changes from most of our colleagues.

We look forward to the completion of Dan and Naomi Ochieng’s residency in Cape Town, SA and their arrival in Kijabe to carry on the work, probably in 2018.  In the interim, Humphrey Okechi will be the sole neurosurgery consultant, and we ask for your prayers for him.  Although we have many visiting neurosurgeons scheduled to come over the next 6 months, the responsibility of the provision of care will be Humphrey’s.

After the holidays, we had two visitors from UW Madison. Emily Meyer, the nurse practitioner who I mentored in her final term as a student, and Marcella Andrews, the pediatric physical therapist with the Spasticity and Movement Disorders Clinic, came just after Christmas and stayed for nearly 2 weeks.  Most of our visitors have come to help Leland; I was thrilled to have two people who were with me much of the time.  Emily saw a very different practice of pediatric neurosurgery from what she has experienced in the States—she tapped ventricles and myelomeningoceles, taught Elizabeth recognition of heart sounds, and helped keep track of our infections.  Marcella gave us a glimpse of what could be done with pre and postop physiotherapy for our children with hydrocephalus, spina bifida, and brain tumors.  The teaching she provided to the mums was so needed.

With Emily and Marcella providing needed encouragement, I climbed Mt. Longonot, the volcano near Kijabe.  We also went, with Mercy, to Maasai Mara for a safari.  

Emily and Marcella enjoyed “shopping” for beaded jewelry with Samuel, the Maasai guard from the Rift Valley Academy.  He was in despair after losing 8 out of 12 cows to lions in the forest near his home in Suswa. 

In our last weeks in Kijabe, we had two other visitors; Dan Hansen, a junior faculty neurosurgeon from University of Iowa, and Ross Green, a medical student from the University of Arizona. 
Peter Kitunguu, Ross Green, Leland, Dan Hansen, Addisaleam Belete

I love having visitors—not only because it makes rounds much more academic (the mums’ eyes got very big when 9 people, 7 of whom were wazungu, gathered around their beds each morning) but also because their reflections give us “fresh eyes” with which to see the impact of our service.  I want to quote from Marcella’s reflections.

“This is what Dr. Leland Albright and Susan Ferson have done for the mums with children who have spina bifida, hydrocephalus and tumors.  They have given them a reason to be thankful.  Of course, I don’t believe the mum’s are cursed because of the birth of this child and I don’t believe it is God’s will either.  The only answers that I could provide for why this has happened to them would be looking at the science of why (folic acid?) and how (lack of neural tube closure) but it feels a little too late for these mums right in front of you.   But what I did feel in their presence is enormous gratitude, not that their child has a disability but that there is a place for them to come.  They did not have to hide or be shunned from their community but could be together and see they were not alone.  During morning rounds, I watched the mum’s faces and what I saw behind their eyes was gratitude.  They appeared thankful for anything that was offered.  They appeared thankful that this group of people stopped by the bed of their child and talked about them.  Their child mattered.  They would point out certain changes in their child and their opinion mattered.  We were validating them and giving them a voice. They could be thankful for the care that was provided to them at Kijabe Hospital.  One mum asked quietly, “I’m so thankful my child doesn’t have a big head like that, what is that from something they eat?”  She was thankful even though her child just had a cancerous tumor removed from his brain.  Here at Kijabe hospital they were encouraged to love their child which is what all mothers want to do.   No matter the surgical outcome or the challenges their child with a disability may face in an unaccepting culture, these mothers had a place to be thankful and a child to love.  Without Kijabe hospital many of these mums would have been encouraged by African culture to love their child only in secrecy, that their child is a curse and it is God’s will.  Here these mums found a place to be thankful, a place of community, a place where they were heard and where they and their child mattered.” 

I want to say clearly here that Leland and I, Humphrey, Erik Hansen, Ken Muma, and all of us who work at BKKH are just contributors to what has become the mission.  Dick Bransford started operating on children with hydrocephalus and spina bifida—that wasn’t done in Kenya before him.  Dan Poenaru started the academic mission—to train African physicians to care for these children.  We have made our contributions.  But, it is important to know that this is not Dick’s program; it is not Dan’s, or Leland’s or Humphrey’s or Erik’s or Ken’s.  It is God’s program and we are merely the servants who carry it out.

In my last few days in Kijabe, I had a lot of “lasts”—last dawn over the rim, last sighting of the Southern Cross, last sunset over the Rift Valley, last presentation of the quarterly audit (it was my 16th presentation).  I will never again have such a beautiful view outside my window.
dawn in Kijabe
  I doubt I will ever find the daily challenges and fulfillment I found there, either.  It is rare in life to find a vocation that uses every bit of knowledge, skill, and preparation one ever has had—I don’t expect to find that again.  What was hardest was saying goodbye to so many Kenyan colleagues—Musyoka (my Kenyan “son”) and his wife and baby daughter, all the nurses, Elizabeth, Mercy.  Mercy was the hardest—she is my Kenyan sister-in-Christ, my comfort in hard and sad times, my encourager, my friend.  We both shed tears during that goodbye.

Mercy and me

Musyoka, Gladys, and Baby Joy

During my last days in Kijabe, the new executive director for BK International visited.  He asked me what was the most important thing I had done—something that may have made a difference.  It took me some moments to think about that—but finally I realized that the most profound moments in my life in Kijabe had been during those times when Mercy or Pastor Agnes and I had counseled mums of children whose care was medically futile.  There was no medicine or surgery that would benefit their child.  Elizabeth Njoroge and I remarked that we are so grateful that God called us to be nurses—because unlike surgeons or even medical doctors, nurses always have something to offer.  Even when no medicine or surgery can help, the family can be comforted; the child’s pain can be eased, the hope that we have in Christ can be shared.  As nurses, we are able to be with the patients and families—not to cure, but to comfort.  My time in Kijabe was filled with those opportunities.

Leland returned to the US on January 16, 2015; I returned on January 20.  We now live in our beautifully renovated bunglalow in La Grange Park, IL.  Sparkling clear water comes out of the tap EVERY TIME it is turned on.  Our oven actually gets hot enough to bake my home-baked pizza.  It is a wonder living here, and we give thanks every day for all of our blessings.  But, I think, a part of me will always remain in Kijabe.

We don’t know what God has in His plans for us—Leland has entered a year-long online course in Theology and Ministry with Princeton Theological Seminary.  I have started working on my trains—my Dad had a train set which he gave to me; I have spent much of my adult life planning to set up the trains.  But, I know God has something set aside for each of us to do—we are looking forward to the next chapter in our lives.  He has promised great things:

From you comes the theme of my praise in the great assembly; before those who fear you will I fulfill my vows.  The poor will eat and be satisfied; they who see the Lord will praise him---may your hearts live forever!
All the ends of the earth will remember and turn to the Lord, and all the families of the nations will bow down before him, for dominion belongs to the Lord and he rules over the nations. 
All the rich of the earth will feast and worship; all who go down to the dust will kneel before him—those who cannot keep themselves alive.  Posterity will serve him; future generations will be told about the Lord.  They will proclaim his righteousness to a people yet unborn—for he has done it.

Psalm 22: 25-31

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8: 28

Take care, God bless, Asante sana (thank you very much), Kwaheri (goodbye), 

Saturday, November 22, 2014

You will keep in perfect peace
Him whose mind is steadfast
Because he trusts in you.
Trust in the Lord forever,
For the Lord God is the Rock Everlasting.
Isaiah 26: 3-4                         

Habari yako, rafiki.
As I sat this August and September on our lovely front porch in La Grange Park, I read those
Autumn in La Grange Park, IL
words from Isaiah again and again.  Over the past 6 months, Leland and I have made many decisions that will change our lives and move us in a path that we didn’t foresee 6 months ago.  We have felt incredible peace about these unexpected changes.

In 2008, we each felt a strong call from God to come to Kijabe, to do and teach pediatric neurosurgery.  We initially thought we might spend 2-3 years here but soon after arriving in September 2010, we realized that it might take up to 6 years to train enough people to carry on the work.  We even joked about staying longer—saying that we may not want to leave.  My personal view has always been that God would just as clearly show us when our time at Kijabe should end as He had in leading us here.

Soon after arriving in the USA on April 30, 2014, Leland experience debilitating exhaustion and muscle weakness.  We decided to extend our stay in the States in order to obtain a definite diagnosis and allow him to rest.  After 4 trips to Madison to see specialists in neuromuscular medicine and infectious disease, 76 blood tests, electromyography, nerve conduction studies, and a total body CT/PET scan, the doctors have determined that Leland has Chronic Fatigue Syndrome of unknown origin.  Over the time Leland was in the US, he really never improved—he would have good days and bad days with his weakness and fatigue, but we saw no real improvement. 

On November 1, 2014, we returned to Kenya in order to train another person to take my place.  We have tickets to return to the States in mid-January 2015.  Although this is not the way we had planned or hoped to end our service in Kijabe, we see God’s hand in this, as in each stage in our lives.  We are sad to leave our friends and colleagues here in Kijabe—but are looking forward to our lives in the US.

My cochlear implant in February has exceeded my expectations and even my dreams.  In conversation, even in noise, I understand almost everything that is said.  I can now close my eyes and bow my head during corporate prayers and hear nearly every petition and praise.  I have been able to carry on conversation with my co-workers here in Kenya—even to chat with the nurses and understand the mums’ English and some Swahili.  The ability to hear has been life-changing and, to me, miraculous. 

Our first night back in Kijabe, we had a huge storm that knocked out the electricity for about 10 hours—getting ready for work in the dark wasn’t a problem since the battery powered alarm decided to quit at 5:10 am—the alarm had been set for 5:15 am.  So, we awoke (after a fitful sleep—jet lag was terrible this time) at about 6 am (first light) and were at the hospital at 6:30 am.  And, mshungao (surprise in Swahili), there was no hot water (or any water) from the hot tap, so we really felt we were back at home.

The plumbers fixed the hot water by our third day here, so we now have hot and cold running water.  Our new neighbor across the hall (a long-term missionary formerly in India) gave me some tips on handling the washing machine (I now add several buckets of water to the drum) so that it no longer takes 2.5 hours to wash one load.  I am back using my  “solar dryer” (the sun) and hanging the clothes outside—I really missed doing that while I was in the US. 

After being here for three weeks, it is obvious that Leland cannot maintain even the slower pace that he has adopted in response to his illness.  After we make rounds each morning (which takes about 2 hours), he comes back to the apartment and sleeps for up to 2 hours, then rests until he is called up to help in the theatre.  His exhaustion is visible in his face.  People stop him and tell him how glad they are to have him back—even just for rounds, or teaching.  But I can see that he has worsened a bit since our arrival.

One of the big unanswered questions in regard to our leaving Kijabe earlier than we had anticipated is: will pediatric neurosurgery continue at BKKH/Kijabe Hospital?  Humphrey Okechi was married November 8 to Ruth Muthoni, a nurse at BKKH in Entebbe Uganda.  They will be on leave for the month of November.  In Humphrey’s place, we have a visiting neurosurgeon, Dan Curry, from Texas Children’s Hospital.  He is a great clinician and teacher, and the resident and fellow have appreciated his lectures.  We also have a visiting neurosurgery resident from the University of Wisconsin, Carolina Sandoval-Garcia, who has been a great encouragement to our Kenyan neurosurgical resident, Grace Muthoni.  Leland has arranged for visiting chief residents to come in January, February, March, and April 15-May 15.  Dr. Veeti Li, a pediatric neurosurgeon from Buffalo, will make his 3rd trip to Kijabe in July.  However, we will have great need of more pediatric neurosurgeons to provide help for Humphrey over the next year.

The new wing construction has been halted because of legal problems, and we do not know when it will be completed and opened.  It certainly will not be in our Kijabe lifetimes.  The nursing staff is being led by acting in-charge nurses (acting head nurses), and no one has been identified to direct the nursing care.  However, Elizabeth Njoroge has been chosen to start training with Veronicah and me to take care of the neurosurgical patients.  Elizabeth came to me about a year ago and said, “I want to be you.”  She has a passion for taking care of our children, and has wonderful initiative and organizational skills.  It will be a delight to have her take my place along with Veronicah.

This week, Veronicah, Pastor Mercy, and I talked with two mums about ending treatment of their children.  One was the mum of a 6 year old boy with a recurrent brain cancer—after the second operation to remove the recurrent tumor, and radiation therapy, his tumor recurred.  He is the third child, and only son.  His mother expressed gratitude for the care he had received over the past 2 years here at BKKH.  The second child is 5 months old, was born with no brain above the brainstem (hydranencephaly), had a surgical procedure to control the growth of her head, and now weighs her birth weight.  Both conversations were heart-breaking—these children are greatly loved.  We saw three additional babies this week with hydranencephaly.   Two other babies passed away on Thursday.  There are days when I come home feeling stunned by the sadness here.

Traditional healing scars

Leland’s sister Mary sent us handpainted tote bags for the mums that her garden club had made—Mercy and I spent time one morning handing them out.  It means so much to the mums to hear that people in the US, Canada, Great Britain, Australia think about them, pray for them, and want to help them.

I ask for your prayers for the following:
-For Leland to have the strength to maintain the pace here in Kijabe over the next 2 months.
-For Veronicah Njaramba, our clinical officer, who has worked heroically in my absence.  She needs encouragement and support to continue her vital role on the service.
-For Mercy Nganga, my Kenyan sister, who, like me, is approaching the end of one chapter of service to Jesus Christ—and is looking for direction for the next opportunity to serve.
-For BKKH and Kijabe Hospital, to determine the long-term commitment to pediatric neurosurgery and how each organization can support the care of the children with neurosurgical problems.
-That the legal problems encountered by BKKH in the completion of the new building be resolved so that the wing can be opened soon.
-For Humphrey and Ruth Okechi, that they may be strengthened and supported during the time that Humphrey is without a permanent colleague in neurosurgery.
-For BKKH as the organization transitions from one Executive Director to the next.
-And always, for the children with spina bifida, hydrocephalus, brain tumors, spine problems and their families—that they will know God’s love and care through us.

Take care, God bless.