Yesterday, Luke came home from a 3 day stay in hospital where he had a feeding tube inserted. His ability to swallow is reducing fast and he is now choking on most liquids. He is not eating enough either, he has lost 6 pounds in 2 weeks.
We went back to his pediatrician this morning as he was still struggling with pain and we were not sure if it is the procedure or the illness - or both.
It turns out that part of the issue is frustration from his inability to communicate and anxiety and crankiness from not sleeping properly at night. We have not had a night without many hours of wakefulness, often with pain for the past month. It is getting unsustainable for him and for us. His pediatrician is looking into getting us a night nurse as most of the feeding and medicine administration is going to take place at night going forward and we are not sure we can cope... Let's hope she is successful with getting approval from the insurance...
We went back to his pediatrician this morning as he was still struggling with pain and we were not sure if it is the procedure or the illness - or both.
It turns out that part of the issue is frustration from his inability to communicate and anxiety and crankiness from not sleeping properly at night. We have not had a night without many hours of wakefulness, often with pain for the past month. It is getting unsustainable for him and for us. His pediatrician is looking into getting us a night nurse as most of the feeding and medicine administration is going to take place at night going forward and we are not sure we can cope... Let's hope she is successful with getting approval from the insurance...