Part 2 of 3 (click here for Part 1)
Sleep eluded me on the flight but the news of Katie and, the crisp, Balkan mountain air snap the jet lag out of me. It is game on and I am anxious to get to my patient. I climb into a minivan and off we go to the hospital. My escort provides an update on the basics of Katie’s past 24 hours. Katie’s pick-up from the orphanage went without a hitch and they successfully got her passport work done. The Mussers returned to their hotel and were able to get some food into Katie. She refused to take in any nutrition on subsequent feeds and experienced four episodes of loose, runny stools by early morning. Susanna recognized Katie showed evidence of advanced dehydration. This prompted Joe and Susanna to seek medical care. “She is in very good hospital”, the woman tells me as we arrive. The hospital building does seem modern. I later learn it is owned by a Japanese hospital conglomerate.
I greet the Mussers on entering Katie’s room; they appear exhausted. Susanna gives me the details of what it took to get Katie to this hospital (Click here to read Susanna’s telling of their “adventure”). I catch my breath when I turn my attention to Katie. I’ve seen many pictures of her, but this does not prepare me for the magnitude of her condition. My hand is the size of her body, her head and extremities are proportionally tiny. Her statistics are as follows:
Weight: 10 pounds, 9 ounces
Length – 29 inches
Waist: 12 inches
Foot: 4 inches
Thigh circumference: 5 inches
Upper Arm circumference: 3.25 inches
A nasogastric tube is in place and it looks enormous. It is at least two sizes bigger than the one we intended to place. An IV is infusing Dextrose 5% in Lactated Ringers – exactly what the CHOP Adopt team planned should Katie need intravenous fluid. Her mouth is moist and her eyes are lively; she is looking around the room. She extends her arms and is weakly interactive. She is the size of a baby, but she looks like a miniature child. Her vulnerability breaks my heart, but her tenacity, beauty and will to live capture me.
I assess Katie from head to toe and get an update on how she is doing. Further testing is planned in the morning, but the hospital staff feels she can be discharged to (gulp) my care tomorrow. Everything they are doing seems right and Susanna is on top of it all. She’s proven to be an excellent student and de facto nurse in my absence. The plan is for me to go with Joe to the hotel and return in the morning to meet with the medical team. Susanna will call if anything goes bump in the night. Joe prays at Katie’s bedside and we leave.
The two of us eat dinner together; Joe is quiet, wise and discerning. I feel an immediate father-to-father bond with him. I reflect on our conversation when I am alone in my hotel room and come to a certain realization – my role is different than my experience as an adoptive father. I am here to help Katie, not to parent her. Maybe this sounds obvious but I find the need to clear this in my own mind. It is not my role to provide love, protection or comfort. Instead, I need to remain sharp as an “In Case of Emergency” provider, a liaison between the Mussers and the medical staff, an advocate for patient and family; I need to be a nurse.
I get an uninterrupted night of sleep and feel rested as I return to the hospital. I meet with the Chief of Pediatrics leading Katie’s team. Dr. Lilova is warm and friendly. She raises her hand to her mouth when I tell her I am working with the team at CHOP. She excitedly tells me of spending two months at CHOP during her training. She knows the hospital’s reputation and feels privileged to host me. She also expresses the nationalistic shame she feels on learning a child in Katie’s condition lives in her country. Susanna provides solace, but also takes the opportunity to tell her there are many more “forgotten” children from Katie’s orphanage. The seed Susanna plants will yield much in the months that follow.
Dr. Lilova is a pediatric nephrologist and she is excited about a new ultrasound machine in her possession. She scans Katie head (at age nine, Katie still has an open fontanel) to torso with it. We review Katie’s labs and discuss the issue of refeeding syndrome. She understands this perfectly and agrees with the plan to maintain Katie’s malnourished state. I provide her with Dr. Susan Friedman’s contact information at CHOP Adopt and she calls to give her an update. It is amazing watching these worlds collide, finding there is more in common than not. An agreement is made to help additional US families currently in the process of adopting from Katie’s orphanage.
Katie is cleared for discharge but there is one problem. Arrangements, made weeks prior by Dr. Friedman with the World Health Organization (WHO) in Geneva, fell through the cracks. I was to receive a specially modified formula (normally used in Africa for severely malnourished children) at my hotel. Unfortunately, it is stuck in some kind of customs snafu and does not arrive. Susanna comes up with a brilliant work around, one of which only a mother could think – we can use breast milk! Verity, their youngest daughter, remains on breast milk and Susanna continues to pump while in country. There is an ample supply to give to Katie. Dr. Friedman cautiously approves the idea with one caveat – we do not have exact knowledge of the nutritional content of Susanna’s milk. Too much glucose, too little phosphorous or a little extra potassium could be detrimental to Katie. I convince Dr. Lilova to leave Katie’s IV in place at discharge in case she needs additional fluid boluses; it also provides me an access to draw additional lab work. The new plan is to bolus feed breast milk through the NGT tube. Serial labs at given intervals will be checked. Now cleared, we go back to the hotel.
Our plan is working and Katie seems to be doing well. At the appropriate time, I draw Katie’s blood into tiny pediatric tubes and take the samples via cab to the hospital. Once there, I walk up to a window, hand over the samples and wait an hour for results (it’s a surreal process that would never happen at home). The results are measured in equivalents rather than metric units (like in the United States). I report these numbers back to Dr. Friedman via Skype from the hospital lobby. She interprets them and makes recommendations. Katie’s numbers are perfect the two times we run labs. The CHOP Adopt team feels confident blood glucose testing, using the monitor I brought, will suffice until we get Katie home in 48 hours.
The rest of our time is spent completing paperwork and visiting the US Embassy for Katie’s visa (I get briefly detained because of my insulin pump by a guy that’s straight out of central casting for CIA spook). I confirm flight plans with Lufthansa’s medical team and opt to forgo supplemental oxygen for Katie. Truth be told, I did not want the need for oxygen to scare the airline from allowing Katie aboard.
The first leg of our flight takes us to Frankfurt, Germany. Katie remains quiet as a mouse taking in everything of her new world. Her oxygen saturation drops to 90% in flight but her vital signs otherwise remain stable. Lufthansa escorts us from the plane to a private bus that takes us to a medical holding area. I make a three a.m. (US Time) call to Dr. Friedman and provide an update. She tells me she couldn’t sleep knowing we were en route. She reviews the plans for the final flight to Philadelphia and wishes me luck. Turns out, I don’t need it. Instead, a group of mothers is praying round the clock throughout our travel. Each one taking 30 minute blocks of time; one of them is my wife. The result — Katie becomes the world’s most boring patient. She sails through the flight with perfect numbers, tolerating her feeds without difficulty. A stop in US Customs officially makes Katie a US citizen – a child created equal, endowed by her Creator with certain unalienable rights, that include life, liberty and the pursuit of happiness.
We are greeted by Dr. Friedman and my wife; I have never been more relieved or happy. A quick car trip to the Children’s Hospital of Philadelphia and we walk in one of the most unique patients to ever be admitted to its Pediatric Intensive Care Unit.
My work here is done but Katie and the Mussers have a long road ahead of them.
All pictures unless otherwise captioned are provided courtesy of theblessingofverity.com