Wesley

Thursday at work—not a good day. I walked in expecting to see Wesley (that’s what I named him in my head), our patient with nephrotic syndrome on the ward. (he is pictured in earlier blogs) He’s our longest in-house patient. When he came in he was very puffy from the fluid overload; he had the typical chubby cheeks of a kidney patient. But over the last couple of weeks, he has really improved. He had gotten to the point where every day he sat up in bed in his blue shirt, smiling at me when I walked by and waved. Wesley and I had become silent friends. I could count on his big smile every morning and he could count on my big wave. 

That morning when we went in, we went to the doctors’ lounge like we usually do to put our bags down. One of the house officers came in and said, “The patient with nephrotic syndrome is having some complications.” We walked back to his ward and he was lying on the floor, acutely convulsing and hadn’t had any urine output in over 24 hours. A whole slew of medical events happened after that, much of it I met with frustration; they barely had any of the things available that we needed for him. They were all trying hard and doing the best they could, but it is incredibly disheartening to be able to do nothing for your patient simply because you don’t have the resources. On the other hand, I didn’t need a renal function panel or Istat to tell me he was in renal failure with severe acute metabolic acidosis- he declared himself as such when he started Kussmaul breathing (a compensatory mechanism to rid the body of excess acid). But what we did need was intubation materials (they do not intubate here), a transfer to the ICU, dialysis, and a whole bunch of other things that Jonathan, Bertina and I knew he was never going to get. From a learning point of view, he went through so many stages that you could learn a ton of medicine from that one patient. From a medical help-a-patient point of view, we were simply disappointed. Saddened at being unable to get him what he needed, and puzzled that a more organized system is not in place to deal with such things. I guess I am so used to knowing when is the last time a medication was given because in the U.S. there is always a Recorder on the trauma scene. Each person was working hard- it was nobody’s fault. I think the communication between doctors, nurses, and orderlies just wasn’t there. On top of the medical stuff. There were far too many cooks in the pot. He needed a medication to bring down his very high blood pressure- we didn’t have it. He needed dialysis- there is one dialysis machine in the hospital and it was broken. He needed so many things that we just didn’t have. So we used the medicines we had and we waited.  Jonathan and I calculated his fluids using a ‘drip factor.’ In the U.S. we have IV pumps. You simply tell the machine at what rate you want the fluids to run. Here, you have to figure out exactly what the patient needs per minute, and manually manipulate the drip until it gives you exactly the number of drops you want per minute. It’s a matter of gravity and timing the drops. It took 15 minutes for us to get it right, as we had to quite a few calculations. Jonathan was the brains of the operation.  I helplessly shooed flies off of Wesley while we waited. Parents are usually very stoic here so it was almost a surprise when his mother collapsed on the bed in tears. He finally came around and stopped seizing, but we have been here long enough to know that his prognosis will not be a good one. Jonathan, Bertina and I kept stealing glances at each other because we knew how this would end.  

The next day we learned that in order for him to get what he needs, he requires transfer to another hospital, where he could get dialysis, and a bunch of other medicines his kidneys will need. His creatinine was 538 that next morning. The team talked with the mother, who regretfully told us that because her husband had also recently been discharged from the hospital, plus the money spent on medications for Wesley, plus she has 3 other children, she simply could not afford the 700 Ghana Cedi (approximately $350 US) to Komasi. Jonathan and I talked about paying for his trip, but the problem is that his insurance will only pay for one cycle of dialysis, leaving the family the financial burden of his subsequent dialysis, as well as that hospital’s bill, as well as all the care he will need from here on out, etc, etc, etc, fees far too great for her and her family. The alternative option was comfort care. She stated that she felt lucky and blessed that he had been with her even one more day. She was sitting on the floor with his head in her lap. Bertina brought her a bucket with an ice pack from home so she could have cool water to keep him comfortable. 

This is only one of the extremely sad stories we have encountered while here. I don’t include them all in the blog because that is not the spirit with which I wish to share this experience with you. But rather to explain some of the level of issues these people face, and why some of you family members might have heard us say sometimes we look forward to coming home.  On the plus side, we heard through the grapevine later that afternoon that he was indeed getting the transfer to Komasi. Hopefully he will do well after all.

Wesley's little brother, the ever-cheerful toddler who has lived at the hospital with his mom and brother the last few weeks

But I have to reiterate what a good job some people here do. Hamza is the Director of Human Resources here at the hospital, and he also works under Dr. Segoe, the CEO of Tamale Teaching Hospital. Hamza wears a bunch of different hats, for which he does not log extra hours, does not get paid, and in fact often spends his own money.  For example, the Outreach program (the school that we went to see kids in rural areas) is his own personal project. He often funds the vehicles and medical equipment himself, in order to help the poor. When we praised him for his kind heart, he didn’t take credit. He was telling us how Dr. Segoe in fact is even more generous than he, and influences him to pay it forward. Dr. Segoe has apparently been known to pay for food for the entire hospital’s inpatients for a week, when the food budget was too low. Of all the things we have learned, we are most impressed with how kind Ghanian people are.  How many doctors do you know who would come out of their pocket to feed every patient in the hospital every day for an entire week.

Hamza (far right) and his team, who organized the Outreach program

Some ICU kids who were doing well and very excited (& hopeful)to have their photos taken: