Kids’ Doc in Jos

Baby Nmembe died in the night. It was only her second night with us. I heard her stir a little at 1 AM but nothing else. At breakfast, Barb commented that she had slept all night and gone 14 hours since feeding; when I checked on her she was gone. There is nothing I can say except that I failed her and her mother, not being careful and attentive enough. So many regrets. I should have kept her in the ICU and found someone to nurse her there. I should have realized she was unstable. I should have kept her warmer, given her more fluid, have had her sleep with us, checked on her in the night, put her on IV fluids. Anyway, I didn’t, I was too careless, and she died. She was her mother’s dear hope, for all her previous three children had also died. Now she has gone home to her village eight hours away.

See Susan Bertrand’s and Saralynn’s blog entries about Nmembe

Little Nmembe is has been in the hospital the past two weeks, suffering from HIV, malnutrition, diarrhea, and generally misery. She had already spent a week in the hospital in December, went home to her village, and returned just 10 days later, sick again. She has slowly been improving, but yesterday her mother became quite sick herself and had to be hospitalized, leaving no one to care for Nmembe.

So now Nmembe is temporarily with us. She’s six months old and weighs ten pounds, less than our three-week-old grandson Ethan. She’s rather passive and solemn. On the good side, she takes formula eagerly. She’s been vomiting, though, so we’re having to give the formula just a bit at a time — she doesn’t like that. She has not started taking antiretroviral drugs yet, but I think it’s time to start.

We don’t know how long we’ll be caring for Nmembe. Hopefully, her mother will be well soon. Even then, though, it might be good for us to care for the girl for a few weeks until she is well on the way to recovery. The family lives several hours away, and sending this fragile baby back to a distant village may not be a good idea.

It’s been a quiet day on pediatrics, to the extent that the resident just briefed me on a couple of the “problem” patients and I didn’t go on rounds. The only problem was one I walked into “accidentally” when I went to the ward for something else, just when little Miracle had become alarmingly lethargic. So it was a day for catching up on some other things, such as getting another computer ready for one of the nurses (despite the fact that she has since left Evangel and moved to JUTH), ordering some supplies that Saralynn will be able to bring when she comes, answering email, and helping Luke with school. So it’s a good point to catch up with a few things here in the blog, too.

First, in case you missed it, Saralynn had to return to the USA last week, alone, because of her visa problem. She’s headed to Washington DC today with her sister Lisa (8 months pregnant now) to apply in person for her visa, and says she’ll be wearing a zani (wrapper skirt) for whatever that will do to help. I’m guessing she’ll get the visa next week but it’s going to be hard to find an affordable seat on a flight to Nigeria so close to Christmas (though Christmas day is said to be a promising possibility).

Second, Luke’s teacher Sara also had to leave suddenly to return home due to the tragic death of her sister-in-law and niece in a car accident. Sara is with her family now and does not know whether she will be coming back to Jos, especially given that her term was ending in June anyway. That leaves a big gap as far as Luke’s education; Sara has done an amazing job with Luke in just four months, and we don’t want to lose the momentum. For now, I’m teaching him as I can in the mornings around my work schedule, and Barb is taking him to school for the classes he participates in with first grade (art, music, PE, library). We really need to find a good plan for the rest of the school year, though.

A bit of good news that got buried in the rush around the events of November was that we discharged baby Babalola a couple of weeks ago. As far as I know, he is the smallest premie to have survived at our hospital, at 650 grams (1 pound, 7 ounces), at least in the past 15 years. This is a baby who should be named Miracle. (See the post of September 6.)

Next, James (previous post) has done wonderfully well the past two days. From being extremely ill Friday night, he’s now doing fine without oxygen, he’s eating, and he’s making plenty of urine.

Finally, I’ve been thinking about the issue of “Intelligent Design” and the surrounding controversy, having read some of the articles and editorials about it, and having just finished the book Summer for the Gods, an excellent history of the Scopes trial. I’ve been organizing my thoughts and questions and will post some of them here, hoping for ideas and responses from others. Just for starters, some of the questions are,

• Is science all that matters?
• Even if ID is not science, can it still be true?
• Can a thinking Christian accept the concept of ID?
• Can a thinking Christian avoid accepting ID?

Time for bed, an hour ago. I missed watching an episode of Monk (Lisa introduced us to that show last month, bringing the 3rd season DVD set) so I could write, and I still am up much too late for my tired bones.

Our pediatric service has been unusually busy with difficult patients. Not as in uncooperative patients, but those with hard-to-diagnose or hard-to-treat illnesses. Today for a while our small ICU was getting seriously like a “real” ICU, with one patient having uncontrolled seizures, another just admitted for high fever and seizures, our “least critical” patient (severely malnourished, 11 pound 9 month old with HIV) transferred to the ward. Then there was James, the most critical patient, where we spent a good part of the afternoon.

James has, we think, acute post-streptococcal glomerulonephritis, a severe immune reaction that is damaging his kidneys. He has been here since Sunday and was doing moderately well until today when he developed high blood pressure again, decreased urine output, and congestive heart failure. It was difficult and frustrating to stand by his bed for nearly two hours trying to hold the oxygen mask on his face while he was trying to tear it off, trying to position him over and over in a sitting position to help him breath, getting a suitable oxygen source, and trying to calm him.

I “texted” the head pediatrician at the university hospital (JUTH) about the possible need for dialysis, would they be able to do it? I got a quick answer and half an hour later a real pediatric nephrologist was at the bedside. Isn’t it a great feeling when you can get a specialist when you’re over your head? In fact, Dr. Ocheke arrived so soon because he was already on his way to church, something you wouldn’t expect your nephrologist in the US to be doing Friday afternoon.

We had a good discussion about James’ problems. The bad news is that, although Dr. Ocheke was willing to dialyze James, he doesn’t have any of the needed peritoneal dialysis catheters. Still, he said he might be able to get one from Lagos in the next day or two.

(While I was just finishing writing this at midnight, I got the idea of giving James morphine, which is sometimes useful in congestive heart failure. I called the ward to see how he was doing, and gave the morphine order to the nurse. I’ve never seen morphine used here, but I had heard we now have it at the hospital. The nurse called back 5 min later, though, saying that there isn’t any in the hospital. Dr. Tina Slusher had left some Nubain with us, though, so I went down to the ward, found it, and gave it to the house officer to try on James. It’s good the HO was there since I didn’t have my glasses and couldn’t read a word of the prescribing information … we’ll see if it helps James sleep, at least. While in the ICU I took the chance to get these photos. I also ran into James’ parents, who were walking around the grounds, and who asked me to explain what his problem was. In all the rush today we hadn’t talked to them. So I explained briefly, then told them that we were also praying for him.)

I was shaken today by the unexpected death of J, one of our HIV-infected children. A week ago he was doing fairly well and, having started on anti-HIV drugs, we had every reason to expect he would do fine. Friday, his mother brought him back saying he was having diarrhea and not eating or drinking. We decided to admit him “as a precaution, just for a couple of days.” He did respond well, but then had a serious setback Sunday night, going into shock after having an increase in his diarrhea. I’ve heard the “adult” doctors talking about how often their adult HIV patients come in with diarrhea and shock and cannot be resuscitated, but I haven’t seen it in children.

We resuscitated him with fluid, adding hydrocortisone, and yesterday he seemed to be doing well, though still weak. A lab result yesterday showed his serum potassium level to be quite high, so we rechecked it as our labs are often not too reliable. The repeat level was even higher, seemingly impossibly high, but an EKG showed none of the changes one would expect to see with high potassium levels, and there seemed to be no reason he would have such levels (diarrhea usually causing the opposite) so I didn’t worry about it.

Then this morning I went to morning report and learned that he had just died suddenly, shortly before. We’ll never know the reason. Perhaps it was the potassium after all, which could fit the sudden death. Or perhaps he had been fading during the night and that wasn’t recognized. Perhaps it was something unavoidable, but I feel I probably should have done more, and might have seen him safely home.

We went on to have two more deaths today, both of newborn, premature babies who had had difficult deliveries. Both arrived ill and, despite what we could do, died within 24 hours. Their families and J’s both suffered a great loss, but I do not feel burdened by the babies’ deaths as I do over J’s, as I don’t think there was anything else we could have done, the outcome (medically speaking) being determined at birth.

Two other patients in our ICU have suffered severe brain damage from meningitis or encephalitis. Both are still unconscious several days after starting treatment, and there really isn’t any hope for a quick or complete recovery for either one. I decided to start anti-tuberculosis treatment on one today, on the quite unlikely possibility that TB meningitis is the infectious cause. It’s an outside chance, and I had to consider whether the nine months of treatment was reasonable or a waste of resources. It’s very sad to see kids like this suffer such severe brain damage, and I wonder how the families are going to cope.

I did see Grace and her parents yesterday, though. A year ago, she too was one of those severely disabled children after a bout of some neurologic infection, but month by month she is progressing. She still doesn’t talk, but she looks more like she understands things that are happening, recognizes people, and is almost walking again. Encouraging!

Coming soon … a wedding in the works; a new foster baby; update on the pediatric HIV/AIDS program

12:30 AM — Just got back from the pediatric “ICU” where I was trying to resuscitate a 1 year old boy, Chukwebuka. It has been very frustrating that we haven’t been able to pin down his problem. He came 4 days ago, Sunday, and was admitted with a diagnosis of severe malnutrition (weighing 5.8 kg), having been ill for three months with bouts of diarrhea, cough, fever, and weakness.

By the time I saw him on Monday, he had already been started on the standard severe malnutrition protocol of antibiotics, antimalarials, magnesium injections, and careful fluid management. He was still febrile. Besides his being wasted, the only thing I found on the exam was that he seemed to have some posturing, maybe more on the right and was not fully alert. His full blood count was unremarkable as I recall and no malaria parasites were seen.

Because of the history I thought of HIV and/or TB, and with the neurologic signs, maybe TB meningitis. We added the standard 4-drug TB treatment to his other drugs, and started feeding him by NG tube. The cerebrospinal fluid analysis was normal and the chest x-ray was probably normal but with increased haziness on the right.

He was a bit better Tuesday and Wednesday but not much, remaining febrile and not “perking up.” This morning we started giving him quinine for possible resistant malaria. A urinalysis showed many white cells, and we started ciprofloxacin. (We can’t do urine or blood cultures and sensitivities). He had had a seizure or two aborted with diazepam. The HIV screen was reported as negative.

This evening he developed more seizures and had several doses of diazepam. He also had increasing oxygen requirement and by the time I was called he was quite hypoxic even on high oxygen flow by face mask. When I reached the ward he had had a respiratory arrest and was being ambu bagged by the resident. The breath sounds were very decreased everywhere but there were no wheezes or crepitations.

I asked for a blood pressure but the $1 wall adapter couldn’t be found and at least he had a fair pulse. I ordered some albuterol (salbutamol) by nebulizer and it took a while to find a machine. Meanwhile his oxygen saturation was reading around 50% and he was seizing on and off, but still breathing. The treatment didn’t seem to help, but I found that with ambu bagging there were good breath sounds. Without bagging, there was effort but no air movement, so I thought of obstruction. Epiglottitis, tracheitis, abscess?

We got the anesthetist to come and intubate the child though even he had a difficult time and could only get in a 3.5 tube. There seemed to be some pus or exudate around the laryngeal/pharyngeal area. Once he was intubated we gave phenobarbitol and the seizures subsided. When I left he had good oxygenation but was still not breathing enough on his own, so a relative got the job of assisted ventilation.

A frustrating situation, another case where we’ll probably never know just what the problem was. Perhaps he is just so debilitated by malnutrition that he has overwhelming and disseminated bacterial infection, perhaps with Staph. It seems strange that he would deteriorate after three days of IV antibiotics (ampicillin and chloramphenicol, plus the rifampin which is also a good anti-staph drug). Also, we didn’t recognize any stridor or barking cough or signs of impending obstruction.

Right now he certainly has a very poor prognosis. Many people including myself are praying for him — as I went to the theatre to talk to the anesthetist I passed a group of three men praying loudly, almost shouting, in the African way, while I in my inhibited Anglosaxon way pray quietly. Either way, God is able and our trust is in him and not in how hard we pray.

“Paul” came back to the clinic today, and is much improved after some intensive treatment with antibiotics, antimalarials, and antifungal drugs. In fact, he looked almost great. We’re a little worried about some liver tenderness but went ahead today and started him on a second-line anti-HIV drug combination (didanosine, lamivudine, and Kaletra). He’s still in a precarious position with his CD4 count of 4 (normal for his age is >750) but we’re thankful for the progress he’s made.

Things are still quite challenging in the pediatric HIV scale-up program. There has been a lot of miscommunication and misunderstanding particularly between the clinicians and the pharmacy, and it’s taking a lot of time and patience to try to sort things out. One family gave up and left without their drugs today after waiting for hours. We have a meeting of the hospital HIV program tomorrow morning … can we get some things ironed out?

We a beautiful view of the solar eclipse today. The sun must have been about 80-90% blocked, like a crescent moon, and the landscape was distinctly dim. Cool!

In the HIV/AIDS treatment community, we’ve heard it over and over. Adherence is everything. The key to a long-term suppression of the virus is to keep it from multiplying, because multiplying means mutating, and mutating means developing resistance to the drugs. So a large part of our effort must be directed toward doing everything we can to ensure that our patients are able and determined to take every dose. The situation is so critical that missing one or two doses during one month can spell drug failure and ultimately death for the patient. See the story, “The Monkeys’ New Houses,” that I wrote for AIDS Is Real and It’s In Our Church.

If you’ve ever had to take medicines for even a week or two, you probably found that it’s easy to forget a dose or two. Maybe you’re held up at work and don’t have the drug with you. Maybe you are feeling too sick, or the drugstore is closed until the next day. In most situations, doctors are probably very happy if patients get 80-90% of their doses. Not so with HIV/AIDS.

Paul (not his real name) is three-and-a-half years old. He was one of the first children in our antiretroviral (ARV) program, which he entered nearly 18 months ago. He did very well, making a remarkable turnaround. His CD4 count (a measure of the strength of the immune system) went from a terrible 16 to an almost normal 700 after 8 months. Now, though, he’s once again quite ill, and his latest CD4 count is again less than 20. What went wrong? [Chart above: Paul’s growth chart showing rise and fall of CD4 and weight (height too, but that’s surely due to measurement error).

Well, we don’t have the resources to determine just what went wrong. Very few centers in Africa do have the ability to count the virus in the blood (viral load) or to determine to which drugs a patient’s virus is resistant or not. So we have to go by the most likely scenario. If the next paragraphs are too technical for you, just skip to “The Bottom Line” below.

Paul’s mother died last summer, quite suddenly and unexpectedly. In the turmoil surrounding that tragedy, Paul went for at least a week without taking his antiretroviral drugs. The first event was that two of his three drugs (zidovudine and lamivudine) quickly disappeared from his body after a day or two. Next, the virus started multiplying, though at a low rate because it was still held in check by the third drug, nevirapine, which stays in the body for days to weeks. Almost every new HIV virus particle is different from its “parent” because the copying process is so error-prone, and there were perhaps ten to a hundred million new viruses being made in Paul’s body each day.

HIV only needs a single mutation to make it completely resistant to nevirapine and related drugs. Very likely the mutation arose during that one-week gap in Paul’s treatment. Being unaffected by the nevirapine and in the absence of the other two drugs, it would quickly reach high levels of multiplication and begin destroying the immune system again.

If we had known this at the time, not just worried about it, and if we had had an alternate class of drug available, we might have stopped the downward slide. We didn’t. Next Paul started taking all three drugs again, but unknown to us, only two of them were still effective. That meant the virus kept multiplying at a low level, slowly accumulating mutations that made the zidovudine less effective, and at some point (probably) aquiring another single mutation, the infamous M184V, that made his lamivudine next to useless as well. Now, with much more freedom to multiply, the virus could even more quickly accumulate mutations against zidovudine.

All of this happened silently. Finally, with the virus probably near its original levels, Paul became sick again and his CD4 count fell back to near zero. The damage is done, though, because resistance cannot be undone. On top of everything else, it looks as if Paul has had a recurrence or new case of tuberculosis, though other lung diseases are possible.

Second line, what second line?

(Feel free to skip to The Bottom Line). So, now what? We need at least two new drugs to which the virus is (hopefully) sensitive. Our current choices of drugs are: zidovudine, stavudine, didanosine, lamivudine, tenofovir+zalcitabine, nevirapine, efavirenz, and Kaletra (lopinavir/ritonavir).

Lamivudine, zalcitabine, nevirapine and efavirenz have failed (zalcitabine with lamivudine and efavirenz with nevirapine). Zidovudine and stavudine (more-or-less equivalent drugs) are compromised. Didanosine and tenofovir (?) are possibilities, but cannot be given together, and in any case we would have a hard time getting the right dose of tenofovir since we don’t have it in liquid form. Kaletra is the only remaining drug, and a very good candidate, but the anti-TB drug rifampin is incompatible (causing the body to get rid of Kaletra too quickly).

The Bottom Line

It’s likely that when Paul missed a single week of treatment this led, silently at first, to the failure of all three of the drugs we were using for him. Plus he may have tuberculosis (TB) which is very difficult to diagnose accurately here. We’re in a pickle. To do proper second line treatment, we need to have at least two new drugs, preferably three, to which Paul’s virus is still sensitive. We do not have three drugs. Without resistance testing we have to play the odds, as we do on the question of whether to treat him for TB. If we do treat for TB, that eliminates the most promising second-line drug choice during the 6-9 months of TB treatment.

We’ll have to make a decision this week. I’d love to hear comments or advice.

Sometimes I feel like being on the pediatric service is pretty boring. That’s usually when we either have few patients or when it seems they all have the same few ailments: malaria, pneumonia, diarrhea, jaundice, and so on. At one point last week, though, I stopped and thought of all that had gone on that day and all the difficult and less usual problems our patients that day had. So for the record, here’s what I jotted down, just the memorable patients of the day.

In the clinic:

• A one year old weighing 6 kg (13 pounds), and not having HIV
• V, a boy with sickle cell disease whom we’ve been treating for quite a while for tuberculosis. The TB was unusual in that it infected the bones of his left leg and created abscesses that drained for weeks. It also infected the spine and caused paralysis which has been gradually improving. He came back this week because he was limping. I thought it was because he was having pain but finally got it straight that he wasn’t in pain, just limping. Residual weakness? Well, I almost missed it, but I got him on the table and compared his leg lengths: the left was 4 cm shorter than the right! Growth plate damage? Eventually we’ll get x-rays but the pre-Christmas rush isn’t a good time financially for patients. Fortunately our occupational/physical therapist happened to be in the room at the time and advised us on how to get lifts made for the boy’s shoes.
• Grace - see blog. She’s doing better at every visit. Starting to use the left hand, obviously attentive to people.
• A newborn complaining of not passing stool for 5 days. Well, ok, the mother was complaining. Exam normal so just reassured.

On the ward:

• A ten year old we thought had typhoid but discovered also has renal failure. Haven’t figured this one out yet.
• Two year old with high fever, not responding to anti-malarials. A virus? Typhoid?
• Next to that one, a three year old with high fever, also not responding. Also, he’s been having seizures. I point out to the resident & intern the mouth lesions and the subtle seizures he’s having just in the hands at the moment. We’re worried it may be herpes encephalitis.
• A 2 week old, abandoned by the mother, brought by the orphanage worker with deep jaundice, refusal to suck, and deep, rapid breathing.
• New admission — 6 month old with pneumonia or sepsis, mother is HIV+. Needs to go to the ICU.
• Newborn recovering from newborn jaundice. Had an exchange blood transfusion for a bilirubin level of 39 mg/dl with symptoms.
• Three babies in the special care nursery. Two are 8 & 9 days old and weigh 750 grams (1 lb 10 oz), the other is a two day old weighing 1.8 kg.
• Finally, in room 9, Mr. Oxygen II … our growing premie who has been on oxygen for 8 weeks. It’s pretty miraculous the way he came through the premie problems and is now growing and looking fine, but he just is taking a long time to get off the oxygen. The new oxygen concentrator has more than paid for itself in the money it has saved for this one patient.

Faith died yesterday, in the ICU. Now his mom would like someone to care for his sister. She doesn’t see any way she can do it all herself, and find a job to support the two of them. I am so worn out this week, I’m sad about Faith, at the same time feel bad that I no longer feel the full impact of a child’s death. And I wonder how I can even be sorry for myself being tired and failing to save Faith, when the mother’s loss is so great. Most of her “support team”, counselors from Spring of Life, left for the all-Africa AIDS conference in Abuja the morning after Faith died, so she’s lacking even that support right now.