Submitted by kim on Thu, 02/27/2014 - 06:37 in Nathaniel's Story
We are headed out the door to St. Louis Children's Hospital this morning and it seems the perfect occasion to share who currently makes up Nathaniel's amazing team of doctors. Collectively, we have about two or three doctor appointments a month.
Pediatrician - Like every baby, Nathaniel's pediatrician handles immunizations and well baby check-ups. He often defers to the specialists when decisions need made, but does an amazing job of staying informed on what they are doing and how it all fits together.
Newborn Medicine - This group treated Nathaniel in the NICU and will follow him for three years due to the collective complexity of his care needs. Think pediatrician on steroids.
ENT - Currently, Nathaniel's most critical diagnosis and care pertains to his trachea. The ENT department at St. Louis Children's Hospital saved his life by performing an emergency tracheostomy when he was forty minutes old. They will be the ones to do trachea reconstruction surgery some day down the road. These folks are VERY special to us.
Pulmonology - Nathaniel's pulmonologist helps manage lung secretions and keeps track of respiratory health - an hourly concern for a kid with a trach. Dr. "Name-so-long-no-one-can-pronounce-it" is one of my favorites. She calls out anyone who gets in the way of what she wants for "her little patient," including other doctors and the insurance company.
GI - Like many children with a tracheostomy, Nathaniel had a g-tube in place prior to leaving the NICU. He is working with occupational therapy to learn to eat orally, but still receives all his daily caloric needs through his g-tube. Since Nathaniel is still too little to be on the growth chart, a dietitian visits our home monthly for weight checks and then works with the GI on our behalf for g-tube feeding adjustments. Good. Old Fashion. Housecall. Yes!
Cardiology - Nathaniel has two congenital heart defects that are being monitored on a regular basis, but every appointment I'm told his heart is the least of our concerns right now. Reassuring.
Neurology - Nathaniel experienced a brain bleed at birth. Neurology follows him to keep track of residual problems and overall development. Neurology also arranges for additional testing like the Bayley Developmental Test that Nathaniel had in December and the Alternative/Augmented Communication Test he will have in March.
Genetics - The genetics team at Children's Hospital was consulted during Nathaniel's NICU stay due to his multiple congenital issues. We are meeting this doctor for the first time today and we are very interested in hearing her report. Regardless of what we learn, Nathaniel is first and foremost a child of God, the maker of DNA, who fashioned this little one perfectly - according to His purposes - in Nathaniel's birth mother's womb. Yes, I really believe that. Nathaniel didn't happen to be born with all his issues and then God noticed and decided to work in or through the difficult situation. Rather God knows all things. From the moment of egg meet sperm conception and the first splitting of chromosomes, God knew Nathaniel. And God created Nathaniel for a purpose - that His works might be glorified. Those are some awesome genes to inherit from His heavenly Father!