We are looking for more information and someone who can direct us to a specialist that has experience with infants with eventration of the diaphragm and phrenic nerve paralysis.
My nephew underwent surgery at 3 months of age to repair the right side of his diaphragm. He orginally presented as failure to thrive (weight loss, increased irritablity) The surgeon found that the diaphragm appeared to be normal in appearance, except for being stretched. The internal organs had moved upward in the chest cavity causing atelectasis of the right lung. They plicated the right diaphragm and re-positioned the organs. He was initially given a good prognosis, but now we're told we need a miracle!
Currently he remains on a ventilator after failing extubation 3x. He is unable to cough, causing secretions to build up, requiring frequent suctioning. If no improvement, they may do a tracheotomy.
They believe he has unilateral phrenic nerve paralysis probably caused by birth trauma (vaginal delivery with vacuum extraction and meconium aspiration).
Do you have any insight into problems that could be contributing to failure to wean from mechanical ventilation?
In your opinion, what hospital or facility would be best able to treat a case as described above?
Your help and direction will be greatly appreciated.