Dallas has had a big week.  He is changing every day and starting to act more like a lively little baby.  I believe he feels much better with his nose opened up, his reflux under control, good weight gain, and a bigger G-tube.  He is doing a lot of smiling, kicking, rolling back and forth, and talking.  I was initially very encouraged by all the sounds he makes (thinking maybe he could hear himself), but found out that babies will make lots of sound even though they can't hear themselves.....

We had an appointment at the U of M this morning for his hearing.  He was fitted for new ear molds as he has long outgrown his first set.  He will also be getting bigger aids with more amplification to get him the most sound possible.  The molds will take a week to finish and then he will be back to wearing his aids.  Although the aids alone don't provide enough sound frequencies for Dallas to develop normal speech and language, it's important for him to wear them and be exposed to as much sound as possible.  Additionally, he needs to wear hearing aids for 6 months in order to qualify for cochlear implants.  Serious planning for these implants will begin the first week of December.

I thank my lucky stars every day for Dallas's pediatrician.  She is wonderful and did a great job this week of connecting with ENT and Respiratory to discuss a plan for Dallas that we all can feel good about.  While ENT does not feel Dallas is out of the woods for a tracheostomy, he does feel like there's still a chance for Dallas to get by without one as well.  After some research brought to my attention regarding these surgeries, I was encouraged by what I had learned, but was also questioning whether all of these nose dilation's were really the best for Dallas.  ENT explained that after 6 months, there's a good chance the tissues might begin to stay put versus closing in each time.  We have an appointment next week to see how his nose is doing since the surgery.

Dallas still destats at night, but it does seem to be improving.  After Dallas's pediatrician talked to ENT, he explained that it takes a good week for the inflammation to go down and for you to notice an improvement in the breathing.  If he continues to have desaturations, they will try to increase his Hi Flow and see if that helps.

The biopsy of the esophagus cell tissue showed signs of reflux.  This is no surprise, but Dallas's dose of reflux medication was increased in response.

So, the plan is to continue to watch and see how Dallas responds to surgery and not make any quick decisions regarding a tracheostomy.  It feels good to understand the "plan" and to trust the doctors handling his care.  I keep learning to ask my questions, do my research, get second opinions, and press for answers, until I (we) feel good about everything.