Today I went on an eye-opening home visit. I'm not quite sure what to do with the experience so I think it needs to go here. I read a thought-provoking post the other day (:P) about what the purpose of a blog is, and how the purposes often merge into each other, and here is one such occasion. This is for my own therapy as much as to inform anyone else.
Kelly and Lucy, the physios that are volunteering at SGCP from Leeds Met, asked me to go and visit a child that they were very concerned about. They hadn't seen him in 6 weeks because the mother kept saying that he was too sick, and when they called to find out more they learned that he wasn't eating and the mother was having a lot of difficulty feeding him. As a newly-qualified SLT in England I'm not qualified to offer feeding and swallowing advice, but in a country where there are 5 qualified SLTs nationally I become more knowledgable than most other people around.
So off I went, armed with some very complicated Nepali phrases that I'd anticipated needing, a banana, some curd and a drink with a straw. I didn't really know what to expect but I could give it my best shot and at least offer some advice on positioning to the mum if all else failed.
We arrived at the house, and climbed three flights of stairs until we reached a corridor where the family lived in the first room on the left. Space is a luxury in Nepal. We were greeted with a strong smell of urine as we entered the room, and Nadesh (name changed... confidentiality!) crying on the bed. His mother had been trying to feed him but she stopped when we arrived. She looked exhausted but happy to see us.
I didn't know where to start. Lucy went straight into action trying to soothe him, and then the mother came and took him out while we spoke to the sister in very basic English. She must have been about 11 and didn't really understand most of what we said I don't think. The assesment began with a small piece of soggy banana which just sat on Nadesh's tongue as he opened his mouth and began to cry again. Kelly just got it out before it slipped straight back and choked him. His mother soothed him again and this time we asked her to feed him curd, which we were told he liked to eat already. Again he just cried and the food didn't go anywhere. He was clearly struggling to breathe and wasn't going to swallow anything we gave him, and I didn't want to risk it with anything else. The girls took over and did some physio stuff, and when he was calm again we tried him with tiny drops of mango juice from the straw. One drop took 5 swallows, an almost certain indication that it was spilling right down into his lungs.
What do you do? In England that child wouldn't be given another thing to eat by mouth, but here there are no IV fluids, no nasogastric tubes or PEGs to be inserted. I couldn't bring myself to feed him but we can't let him starve. The girls had also assessed his breathing and it was so irregular, he wouldn't breathe in for 5-6 seconds and then he would, but not breathe out, andso on. He had several collapsed ribs and his rib cage came all the way down to his abdomen, stoppinghis lungs from expanding properly and no doubt being part of the reason behind his vomiting everything he managed to swallow.
This child's story has a better ending than many- tomorrow he will be admitted to a general hospital and as soon as possible he will go to a nutritional hospital where he will recieve a short-term NG tube which will hopefully build his strength back up so he can begin to eat again. But the story isn't over- there are still so many risks involved and the family is so poor they will only ever recieve the most basic care.
I don't know how the girls do this every day. The children I visit are very well managed and reasonably healthy, regardless of their economic status or severity of CP. But here I just felt so useless- I could have endangered that child with my assessment and even when I knew it wasn't safe for him to eat, I was powerless to help the situation. The mother was wonderful, her positioning and feeding technique were flawless but that didn't help. There's no specialist to refer onto, no second opinion, just the hope that he will have caring and competent doctors and nurses at the hospital and that he won't get any infections.
It's a whole other world. Thank God that you're not trapped in it.
I am having an awesome time and learning lots- I have a handwritten post that I will find time to type up on here sometime soon, and an epic update post in my head for the nepal blog, but this just had to be expressed :)