patient notes

I am not patient, but here are some notes of why I should be.

Today Baby F went home, with a smiling mother. Not a tinge of yellow. Feeding well, and looking relatively normal, if you don't look too hard. No seizure medicines, no medicines at all. A grueling effort now recedes into the blur of hours long gone, and a delighted young woman, whose brush with bereavement came too close, holds a baby.

Today we got a final lab back on Baby A. He had been born in late November, and went home, at last, yesterday. I was only part of the latter half of his course, but it was enough to soberly acknowledge his escape. He was born as a premature speck to an HIV-positive mother. As if that weren't enough, he had dangerously immature lungs, and developed life-threatening meningitis, growing stool organisms from his brain linings. Not good. Three weeks of strong IV antibiotics and a small intracranial bleed later, he was still twitchy and volatile. One day it occurred to me from the dark recesses of memory that his spastic movements reminded me of some babies who reflux, whose acid-laden stomach contents boil back up into their esophagus. We tried some ulcer-calming type of medicines and positioning, and it did the trick. Slowly he emerged from his oxygen-dependence, and lost tubes, and gained flesh, and one day there he was, a little boy with a face and personality. When we discharged him, his mother (whose eventually fatal disease did not keep her from investing hour by hour in the survival of this son) simply said "I have no words to thank you, may God bless you." We prayed for A and his mom, and asked her to pray for us. So it was very sweet to get the news today that his HIV test was negative. He has escaped about four commonly fatal conditions already, and he's not even five pounds yet. That is mercy.

Those two departures made room for the next struggles. Baby H and Baby N, neighbors now in suffering. Baby H was born in a refugee camp for Somalians just inside the barren, distant border of northern Kenya. Only the problem was, where she should have had an open anus for passing stool, she had a dimple of intact skin. By the second or third day of life she was vomiting everything that could not pass through, and her mother got on a bus, alone, and took the two day trip to Kijabe, where she can't speak to any of us. We gesture a lot. This woman is a refugee mother-of-8, who just survived childbirth and a punishing journey, and sits now amongst strangers with a critically ill baby, which somehow amazes me. The surgeons saved the baby's life with a temporary colostomy. She has the most beautiful face. And her room-mate Baby N, faces a surgery tomorrow that she may or may not survive. She was born without skin or skull bone over most of the top of her head, only the linings which cover her brain. With a bandaged head she looks exotic, Nefrititi-ish, but beneath those wraps the dura membranes are darkening ominously. Her syndrome includes a whoppingly worrisome heart murmur and tiny malformed fingers and toes. But she is alert and otherwise lovely and feeding well, her mom's first baby. The surgeons tomorrow will try to stretch some scalp over her defect, and perhaps transfer grafts of flaps from other areas of her tiny body, bloody and technically challenging enough without the question of her heart's capacity.

This is Kijabe, a place that seems to draw in fragile, marginal, guarded-prognosis people. As Scott and I often say to each other, almost everyone we care for here would have been long dead in Bundibugyo. Instead, here, they are scooped up into the Kingdom, the mountain of the Lord that is populated by the scabby-scalped and jaundiced and spastic. Here they are treated with the honor of being important enough to warrant surgery and xrays and labs and effort. Here they encounter a few missionaries but mostly dedicated Kenyans, who are raising their own money for new projects, and providing their own administration, who are accessing the internet and pondering the possible. Bundibugyo in another fifty years? I hope so. Let us be patient.