Rahul is a little 3 year old boy who was first diagnosed with TBME (tuberculosis meningitis or tuberculosis of the lining of the brain) in November of last year. The doctor hospitalized him and then discharged him with a month long course of medication and told them to come back in a month for further follow-up. As happens with many TB cases, Rahul was doing better after the first month of treatment, and the parents being uneducated figured he's better so there is no reason to take him back to the doctor. Of course this is not how TB works and without a full course of TB medication the infection is still present and merely gains resistance to the TB drugs and manifests much harsher later. This is exactly what happened. Rahul got really sick in the middle of February with multiple days of vomiting and seizures and since there is no hospital near the village that can treat such a sick patient, they rushed Rahul here.
I came the day after he was admitted here. I met his parents who were really confused and concerned about who I was. It took them a few days to warm up to me, after which time they would become concerned if I didn't come and always seemed very excited and relieved to see me.
Rahul was put back on his TB medications along with antibiotics. He also had a CT scan done which revealed hydrocephalus or fluid build up in his brain. The surgeons placed a shunt to remove the fluid. Then they kept him in the hospital for 14 days to finish the antibiotics course. Some time before coming in to the hospital, Rahul lost most use of his right arm and leg, probably due to the fluid build-up in his brain. He moves them ever so slightly, but both limbs are bent and he keeps them curled in a fist (his foot too). The doctors say this will be a wait and watch process and taught them physical therapy exercises to do on him - this is his best chance of regaining use of his limbs. It's hard for parents to do these on him since he whines and cries and usually that's enough to get a parent to stop. I tried to drill it into their heads that they need to push on. He also cannot see anymore, and the doctors again say we'll have to see if he regains that. However, on his last day here when Naiara and I (another RMF volunteer based out of Madhya Pradesh) were playing with him he reached out for her bracelet which was held about his head! So we're hopeful that he's starting to regain his sight!
Working with Rahul and his family was my first experience in this hospital. It was overwhelming, even for me. When you need something done the doctors send you on a wild goose chase across the hospital to find it or to take the patient to get whatever it is done. I look professional thus I get good treatment from the staff and guards, some of whom would seek me out to find out who I was (got asked on coffee by a few doctors using this same excuse!), but the rest of the patients are just kicked around. You really had to be an advocate and be assertive to figure anything out there...it could be a really intimidating place! The doctors explain the equivalent of nothing to the families...the doctors come in the same variety as in the states - some really great and helpful and some huge snobs. But you can't just expect that you're admitted so you'll be taken care of like you can back home. Like one day the doctors said not to feed Rahul since he was going to have surgery for his shunt, and yet the nurse yelled at the parents for not giving him milk! You really needed to be on your toes and know what was going on. I spent many mornings just waiting and running around and trying to track down doctors who were on 2 hour tea breaks to get a simple question answered.
Overall though it was a great experience, especially seeing Rahul's parents warm up to me and rely on me with their questions and concerns over time. His parents were very young and overwhelmed and just plain scared like almost anyone would be that situation and being able to help them navigate the system and make sure Rahul gets the best care possible, along with getting to observe the medical care in a government hospital in India was like an all in one for me! I have to say that the doctors are good, very good, very well educated, just the bedside manner and obviously the amenities are lacking. And to see Rahul improve and go home at least more interactive and alert and possibly with some vision was heart-warming :)
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