Rahul (tuberculosis meningitis patient with the shunt placed from Madhya Pradesh) had his follow-up visit today. Yesterday, however, is when the stress started for all of us. One of the Real Medicine Foundation volunteers went to his house to prepare things for their trip. He has been vomiting since he got discharged, and someone mentioned that it might possibly be because of his shunt, so we considered that he would have to stay in the hospital for a few days. Rahul's dad's brother however had some issues. First he said that Holi (Indian festival of colors) is coming up and immediately after there is a wedding in the family. Thus he said that he will only allow Rahul to be in Ahmedabad for 3 days, then it doesn't matter if he is officially discharged or not, he will make them leave the hospital against medical advice and come back home since the festival and wedding is more important. When they discussed how critical Rahul is and how important good follow-up is for him, Rahul's father and uncle said that the festival and wedding is more important, and that it's okay if Rahul dies. They said that they can dedicate time to get him admitted after the wedding is over, but not before. And if Rahul dies do to this decision, so be it, the Real Medicine Foundation is already dedicating more time than necessary to him, so maybe it's better if he dies. I was in shock when the volunteer called me and told me this! I understand that these people are illiterate, but I don't know if that can be an excuse for not understanding the value for a human life, especially an innocent child.
Needless to say I was really apprehensive about this follow-up visit because I didn't know what to expect from either the family or the doctors. After a long and expensive miscommunication about what train station they were at, we arrived at the neurosurgery OPD (out patient department). The neurosurgeon said that the shunt is working well, and that the vomiting is probably due to the tuberculosis medications, and that he is doing well. He told us to visit the pediatrician OPD as well to see what they have to say.
The pediatrician said he should stay on all of his vitamins and tuberculosis medications and didn't agree that the vomiting was due to the tuberculosis medications, but gave him something for when he vomits to help him keep everything down. She was very concerned that he barely gained any weight since discharge, and he is only 5 kg, when he should be 12 kg per his age. She said he is severely malnourished and will need to get a feeding tube again if he can't gain a few kilos. The kid is really struggling, but hopefully the family will get him admitted to a Nutritional Rehabilitation Center after their wedding and get him on the way to recovery.
It's hard working so hard and getting so attached to these children and seeing that despite all of your love and efforts the family still sees it all as frivolous. The parents seemed on board when I talked to them, so it seems maybe the brother is the one with all of these crazy ideas. I just know we have to do the best we can to serve and help and the rest is out of our hands.
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