GI Study

We met with everyone today, neonatologist, nurse, respiratory therapist, developmental therapist, and social worker. The GI surgeon wants a GI study done to see if you're aspirating on a daily basis. They put a dye in your milk and then do an x ray to see where the dye goes. They also take a look at the anatomy of your stomach to see if everything is in the right place so that if/when you have surgery there aren't any surprises. Once we get results and see if you're aspirating or just refluxing we will go from there. If you have reflux, which we believe you do, then we would do the g tube surgery (gastrostomy tube) where a tube is inserted through the abdomen directly into the stomach. There is also a procedure called Nissen where the upper curve of the stomach is wrapped around the esophagus and sewn into place to stop acid from refluxing. The doctor will determine if you need this procedure. If the dye shows that you are aspirating then we would discuss doing these 2 procedures and waiting to see if you can oxygenate better once you aren't aspirating. 

If you aren't aspirating then you also need a tracheostomy for long term ventilation. We have tried all the things possible to wean your oxygen and vent settings and haven't been able to. This surgery is very intense and the recovery can be extremely hard. Some babies thrive once it's in place, others aren't able to survive the surgery and some just don't get better. They basically paralyze you after surgery so you can't mess with the trach and they need you to be still. They stop feedings and give you IV fluids which cause you to swell up. Most babies need more support and can regress to nitric oxide and the high frequency vent. After recovery you would stay in the hospital until your vent settings were low enough for the home ventilator. Once on the home vent you'd go to a children's house where they teach us how to care for you. When home, we would have a nurse for 24 hours. Eventually we would only have a nurse for 8 hours each day. The doctors think you'll need about a year or so on the home ventilator. Time can only tell that. 

Tomorrow's study will help us know what you need. Whichever surgeries you need would be done at one time to avoid repeated anesthesia and multiple recoveries. They will most likely be done next week. Although we don't know so many things, there are things that I am absolutely certain of. 

You are meant to be part of our family and we love you more than can be adequately expressed. 

Heavenly Father has a plan for you and your life has a beautiful purpose. 

You have hundreds of people praying for you who love you. 

Getting you here and keeping you here has been so so hard, sweet boy. But it is all worth it. 

I love you, son. 

Xoxo

Mom