Katie Eaton

Hi guys, my 23 month old son Jameson is a left sided CDH survivor. He had his life saving surgery at Boston Children's Hospital and he continues to go there to meet with the CDH clinic. We just met with Pulmonary this past thursday and the doctor suggested that he might have a cleft in his throat, causing his Dysphagia/ larengeal penatration. He is at high risk for aspiration because of it and we have to use "Thick It" in everything that he drinks (he's currently battling pneumonia now as we speak). We have to go BACK to children's tomorrow to meet with G.I. and then we arent due back until December 5th, the day before his second bday, to meet with O.R.L. and then december 9th we have to go back to Boston Childrens to meet with CDH clinic, December 20th we also have to drive back down to children's to meet with Neurology to have a MRI done on his brain. The reason for all these appointments? If he does have a cleft like they suspect (we already did the swallow study back in august) then that means he will need to have another surgery...at childrens. But they wouldnt just be repairing the cleft, pulmonary also said they'd like to go in and spray some sort of liquid into his lungs and suck it out and also that G.I. would have to go in and do something about his reflux...idk...I dont really rememeber what she said was going to be happening because I was caught off guard; I just kind of tuned everything out I honestly thought the hernia repair at birth was going to be the last of his surgeries...CDH aside, we got pretty lucky with him. He's never had a feeding tube or failed to thrive, but he had been sick alot; every 6-8 weeks after he was born he was put on antibiots because he was constantly having double ear infections that would lead to respitory infections. Finally this past july we had ear tubes put in and the ear infections stopped! He's on ranitidine everyday for reflux, thick it in all his drinks, miralax once a day for constipation and he has a albuterol and Qvar inhaler he uses. He recieves speech therapy and a nutritionist and feeding specialists meets with him as well. Does anyone else with a CDH'er have a cleft and needed it repaired???