why I am so scared for my son to have a trach......
Hello everyone. I need some advice from all of you. My son Thurston has been constantly teetering on the edge of needing a trach. He had a gtube/fundo in October which went really really well and I couldnt have been more pleased with his progress and it got his o2 needs way down and he was able to come home on 1/2 a liter of o2 low flow cannula. That lasted 3 whole days when I tripped on the cannula(I feel horrible) and huge amounts of water went up my sons nose and down his lungs and he had to be readmitted to the picu. He got all the way up to 15 liters on comfort flow and then they were able to get him back down to 1/2 a liter a week later and we were slated to come back home and they were giving him those sweeties(sugar water) even though I told them he couldnt have them because he has a delayed swallow and aspirates and he had another aspiration event and now is back on ten liters. All of the doctors think this is just going to keep happening and that he has no reserve and he is just going to have to keep coming back to the hospital and that his first even little cold will put his life in jeaopardy. I am not afraid of the trach as much as the surgery, the after surgery recovery and the risk of infection. I had a friends baby who died of complications aftewr the surgery and I am of course petritied. My son has no airway issues he just has very bad lungs and so I am wondering if the surgery could also put his fragile body over the edge. But I dont want him rotting in a hospital bed either. He is very very far behind in everything, he was a preemie and he has some brain injury but so far at 6 months adjusted the physical therapist does not see any red flags as far as his muscle tone but I know that early intervention is a must when it comes to any hope of the brain rewiring itself and although he does see ot/pt in the hospital it just is not the same as what he would be getting from me and from being at home. I just dont know what to do. I would love your advice especially from BPD/Chronic lung kiddos and like I said I am not afraid of the trach itself but all of the complications and risks and infections that are associated with it. Thank you so much for all of your time and support.