"Staying Near Them" - On the Wards

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"Dr. Vreeman," said my study coordinator worriedly, "We have never heard you speak this way."

I had just hung up the phone with person in charge of the intensive care unit at the hospital. When this person told me that my very sick patient could not get one of the ICU beds that he desperately needed because he has HIV, the seldom-used, very-angry-Rachel voice came out. In English and in Kiswahili. (Sometimes angry Kiswahili works better here than angry English, even though I'm not very good at it.)

"There is no reason that his HIV should keep him from an ICU bed!" I had said loudly and forcefully in both languages. "He needs a bed!"

At this point, I had made several trips back and forth between the wards and the ICU and countless phone calls, and my frustration was mounting as I tried to figure out a way to get my young HIV-infected patient what he needed… Just because you have HIV does not mean that we should not try everything reasonable to keep you alive. Francis needs an ICU bed because we need to wollop his body with medicines to stop his seizures and they will probably stop his breathing for a while too.

I almost hate to describe Francis because he looks like exactly what you would imagine when I say I work with children with HIV in Africa. He is emaciated, tiny, frail, sick, and covered in terrible rashes that have disfigured his face and head so much that he wears a hoodie pulled over his head to hide as much of his face as he can. For the past one week, he has been having seizures - seizures that are getting worse and worse and worse.

I much prefer to describe the children who bound into our clinics happy and healthy and laughing. The children who are going to school and coloring and doing math exercises on the desks while they wait to be seen. Most of the children in the clinic this morning looked like that. Most of the 15,000 HIV-infected children that we care for in Kenya look like that.

But there are still a few who look like Francis - desperately sick and alone in a rickety metal hospital bed on the crowded hospital wards. Francis is 13 years old, and he has no immune system. He has been taking HIV medicines for the past 5 years, ever since both of his parents died. He has not had anyone to look after him since his aunt died 2 years ago.

On his own, Francis has not done so well with the medicines, and his body no longer has the soldier cells that it needs to fight off infections. I suspect he has a bad infection in his brain that is causing these seizures, and we have been pumping one medicine after another into him in our best attempt to fight whatever infections are taking over his body and to stop the seizures.

I am trying my best to help his body fight. I heard one of the nurses on the wards talking in Kiswahili about how "this AMPATH pediatrician will not allow this patient to be."

True. I still think we can keep him alive. I still want to fight for him. And I do not want him to be alone.

Most of the time, my job entails trying to make our system of HIV clinics work better for the 15,000 children we follow long-term. Sometimes, my job is make an impassioned, even angry plea for an ICU bed so that a frail little boy can get one last, big shot at the medicines he needs to make these seizures stop.

In my last post, I was thinking about what it means to "stay near them", what it means to face broken systems and broken bodies and do what we can to enter in, to come alongside, to care, to help. Today, that looked like getting an ICU bed and special medicines and the right people to look at Francis.

 

Posted at 20:12

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