In 2004, my husband and I went back to school. We entered the Graduate School of Parenting. That's where you learn to make wise choices about your child's health and future. The first decision we faced was made for us. When Austin's heart condition was diagnosed as critical, there was only once choice.. He would have to have open heart surgery to save his life. It was a wise choice to hand over our naked, vulnerable seven day old child to the surgery team. Within minutes after they restarted his newly repaired heart, his mouth, hands and feet were no longer blue, but a beautiful healthy pink. Within months he no longer had to take medications to reduce his heart congestion, his heart was beating perfectly even with a class 3 murmur.
Some choices are not so clear, the line between good and best is blurred. Thursday, we realized we are facing one of those decisions where you have to weigh out all the options, ponder, pray and then make a leap of Faith that you ARE choosing the best option for your child. It's never easy. It's especially difficult when it involves pain.
The nasal endoscopy both confirmed and discounted what the ENT suspected. Yes, Austin has nasal regurgitation, but no, he doesn't have a cleft palate. He has a larynx that is too large. I believe the Craniofacial expert's exact words were "His larynx is HUGE and that's the medical term for it."
This means that when he eats or drinks, some of it enters the sinus. Think of it this way. The larynx is a door way, the adenoids are the door jamb and the cleft palate is the door. The door is perfect, the adenoids are perfect but they don't fit the door way. So Austin's door from his esophagus into his sinus is always open and it shouldn't be. I asked the good doctor, "Who makes the decision about surgery, you, the ENT or the GI doctor."
He said, "None of the above, you and your husband make the decision. He's your child."
Yes, he is. And it is so hard to chose pain for your four year old son. The surgery is a step above a tonsillectomy. The surgeon will cut muscles from the inside of the throat and create a flap to narrow the 'door way.' Sounds simple. Of course, as the good doctor explained to me, they haven't done a lot of these. He can't guarantee that Austin won't continue to have sinus infections, that it will stop the nasal regurgitation or that he won't eventually sound nasal.
So why would we choose surgery? " Because, Mom, if he doesn't have surgery then I CAN guarantee that he will have all of the above. No doubt about it."
Over the next couple of months we will watch to see how the Prevacid works. The GI is scheduling a upper GI series and Endoscopy to see what else is going on in Austin's digestive track. Then ENT will ponder the results of the nasal endoscopy and get back to us with his opinion. Austin's pediatrician will also give us her opinion as she is the one who deals with all of the infections and the consequences of four rounds of antibiotics in three months on this little guy's system. She's thinking long term consequences. The antibiotics will stop working with his system. Then when he is hit with a more serious infection, there will be nothing left in the antibiotic arsenal to fire.
Thankfully, this decision to operate isn't urgent. We have time to sift through all of the information, to let the acid reducers do their job healing the mess the undiagnosed reflux made of his esophagus, vocal cords, and epiglottis. Austin has time to learn, explore and enjoy the world around him.
"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does." James 1:5-8
Keep the Faith,