Eli had his esophageal manomatry testing today at Childrens as a follow-up to his impedence probe from the middle of December. The poor little man cried and I don't blame him. The tube for the probe was an 18 Fr (about the size of a pencil in diameter!) and he kept saying, "I don't want the tubie in my nose". I felt like the worst mother in the world. We made it through the 1.5 hours of testing and his motility team gathered the important information they were searching for. He definately has a delayed swallow with both liquids and solids but it looks like his motility all the way through his duodenum (the upper portion of your small intestine) is okay. With solids Eli cannot form a single bolus and swallow. He delays, forms 3-6 small swallows, and then takes forever to get them all down. This is leading to aspiration. He usually can get his liquid down in one bolus but the swallow is delayed.
I left the appointment trying to hold back tears so the boys didn't think mommy was crazy or that anything serious was wrong with Eli. I knew this moment was coming but it was SO HARD to actually HEAR it from the doctor. After compiling Eli's impedence probe results that did show aspiration with his reflux (yes, I did say reflux), his decrease in respiratory status since the early fall, the upper GI that showed no evidence of his fundo being intact, and the results of his esophageal manometry today......they are recommending Eli get his Nissen Fundoplication re-done as soon as possible. :( :( :( :( :( I knew those words were going to be spoken months ago. I knew Eli was refluxing again. I knew Eli's lungs were getting worse again. I knew Eli was choking, coughing, and wheezing. I knew I didn't want to ever hear those words again.
But I did. And it is a sad truth. But a truth we had to deal with because there is nothing left to do. Why does this have to be so hard? Another 5-6" incision down his abdomen through already scarred tissues. His surgeon will have to take out the mesh that is holding his abdominal wall together from the incisional hernia that developed after his first Nissen fundoplication surgery. Will they have to move his feeding tube site again? How will he react to anesthesia this time with his respiratory comprimise? He almost died from FTT after his last fundo, will it happen again?
All these questions and more won't stop running through my head. I just want to make everything better. But unfortunately a hug and kiss won't fix it all this time.