Well, we've had a TON of doctors appointments in the last month for little Xander. We finally have an official diagnosis and a plan. Phew!
Okay, when he was first born we noticed a high-pitched wheezing sound that he made when he nursed. Then it started happening every time we laid him down to sleep, when he spit-up and at random times throughout the day. I took him to the doctor when he was a month old to get it checked. She listened to a recording that I made of the noise (imagine an overweight asthmatic right after they ran a sprint wheezing into a microphone). Her exact words were, "thats quite an impressive noise" and sent us straight to the hospital for a chest x-ray.
When the X-ray came back normal (praise Jesus!) we were sent to an ENT (Ear, Nose and Throat specialist).
Their office was super scary to walk into. All kinds of metal pokey things, tubes, machines, etc. I was really glad that Xander didn't know what was going on.
He was a super sport about it all. The doctor used a camera-scope to look up both nostrils and down his throat. Xander was super mad about it being in his nose, but when they stuck it down his throat he started sucking on it. It was so cute!
Anyways, the ENT told us that Xander's pallet was perfectly formed (again, praise Jesus!) and sent us to the hospital for an Airway Flouroscope and Swallowing Study.
Two days later we were at the hospital for his tests. Once again, he was a good sport but not very happy about it.
(this is the flouroscope machine. The picture is blurry cuz I was trying to take it without getting caught!)
They had him drink some barium stuff and it lit up on the tv screen. Even my untrained eyes could see very clearly what was wrong, his trachea was collapsing with every breath. Then he started to spit-up the barium.
So, after talking to the radiologist and the ENT again, we went back to his pediatrician today.
Xander officially has laryngomalacia and congenital tracheomalacia combined with GERD (gastro-esophageal reflux disease). He also has an umbilical hernia and a ventricular wall hernia.
Laryngomalacia is a weakened cartilage of the larynx, or "voice box" that is very common in infants. It causes the cartilage to mildly collapse when he inhales, which makes a mild wheezing sound. Congenital Tracheomalacia is very uncommon in infants and is always accompanied with either heart problems, developmental delays or GERD. The trachea cartilage is weakened and collapses (usually) on exhale. Xander's is collapsing on an inhale. Basically, when his lungs fill with air and expand, it should be pulling his trachea open (like it does normally for us). His cartilage is too weak and the pressure inside his chest from his lungs expanding is causing the trachea to collapse. That is what is causing the horrible wheezing sounds. As far as the complications that it is always accompanied with so far he is only showing signs of the GERD (a huge praise JESUS!) and is right on track developmentally. Both of these conditions should fix themselves by the time he turns 2.
The umbilical hernia is from his umbilical chord being thick and poking through his stomach muscles and lining. They expect it to heal on its own by the time he turns one.
The ventricular wall hernia is one was have to keep a close eye on. It is part of his intestines that are poking through his abdominal wall. If it gets bigger or hardens, we will have to discuss surgery to fix it as it can cause more complications than the umbilical hernia.
Our plan for now is to put him on reflux medicine to cut down the acidity of his spit-up. We have to keep him elevated during and after feedings for 30 minutes. We also have to keep a close eye on him for turning blue (indicating he isn't getting enough oxygen) and pneumonia symptoms (babies with tracheomalacia are much more susceptible to respiratory infections since they aspirate their milk/food much more easily), which also means that we will be very careful with him being around anyone with a cough or cold. Plus keeping an eye on the two hernias.
*sigh*
Its been a crazy month of appointments and researching, but we are so thankful to have a definitive diagnosis for the noises and complications that keep me up most of the night listening to so I can make sure he is okay still. Matt and I are both thankful that all of these "problems" are no match for our awesome "Problem Solver"! Jesus is good, all the time!
We appreciate your prayers for Xander and his health, that these conditions would heal quicker than normal, and that he wouldn't experience any of the possible and likely complications from them. Thank you so much!!
We love our little man so much and are looking forward to seeing all the good that God has in store for him out of this situation!
