Laryngotracheal Separation Surgery - Day 5

Nathaniel has improved by leaps and bounds since the third day post surgery. He's playing with trucks, working on language, and roaming the halls pushing and pulling a wagon. Opps! It is not so quiet around here anymore. We're even back to taking hospital selfies. (Boy, do I have a lot of hospital selfies with this kid.) Tomorrow morning early (6:30) the doctors will change his tracheostomy tube for the first time. If you happen to be a Saturday morning early riser - pray for us. Rich and I both need to be present to learn new care. We will see the incision and new stoma for the first time. We have been through many surgeries as parents; it never gets easy to see a fresh surgical wound on a small child. Afterwards Rich and I will each demonstrate our ability to care for the stoma and change his trach tube. If we do this tomorrow, Nathaniel will be discharge. The discharge is two days earlier than doctors told us to anticipate - a sign of how quickly he has recovered in the last couple days.

Our decision for a laryngotracheal separation was driven by the goal of achieving a safer airway for Nathaniel. Our prayer was that his quality of life would improve in other areas as well. We are seeing that improvement already. We have been able to discontinue all nebulized breathing treatments and vest percussion treatments. While Nathaniel has some secretions and needs suctioning occasionally, the team feels since he is no longer aspirating saliva constantly, his lungs will only continue to improve. I can not imagine life without doing a breathing treatment every six hours. The freedom that gives all of us to go enjoy a long day at the park or a friend's house brings tears of joy.

Another quality of life area that will change is eating. We have been encouraged to start oral feeds in two weeks! This change makes me just flat out cry. This little boy has wanted to eat since July 29, 2014 when we stopped feeds due to the aspiration diagnoses .  I have made him angry so many times in the last nineteen months by taking away food he gets a hold of. I have been bit many times when fishing something out of his mouth that he sneaked in.

No one knows what to expect in this area. Nathaniel is writing his own textbook. "Some children were able to eat some things..." is what the research articles say about post surgery eating for pediatric layrngotracheal separations. However, children in those studies were usually aspirating due to a larger neurological issue that likely influenced other areas and skills. Nathaniel's aspiration was assumed to be a local neurological problem in the trachea itself.

"In theory" (I've heard that a lot this week) from an airway perspective, there are no limits on what he will be able to eat. Adults with layrngectomies are not automatically g-tube fed. In reality, we have a puzzle of GI issues to now untangle. A little over a year ago when we could not get Nathaniel's vomiting under control, we switched his g-tube formula to a medical food with no whole proteins. His vomiting stopped almost overnight and he has thrived. We have met with a dietitian and speech therapist about how to introduce foods and textures over the next few months. We will keep data on what is tolerated. We will return in three months for additional testing to see how his GI system is handling new foods. Without a doubt if and what Nathaniel can eat is another issue to sort out. But an issue well worth exploring until we reach a dead end. Even if Nathaniel only gains eating a small handful of things, but needs the medical food by g-tube for his nutrition, it is a fantastic gain.

My friend Gale wrote the following poem the day of Nathaniel's surgery. Gale was one of the first friends I called to talk about adopting Nathaniel. She was with us on surgery day. She understands our journey, with Nathaniel and in faith, well.

The Day Arrives
by Gale Kernitz
January 8, 2016

Long days turned
To months and years.
Tensions mounted,
Weary days and nights.

Some questions answered along the way,
Others waiting for this day and beyond.
The day arrives.
Minutes turn to hours.

Prayers arrive piling on all previous prayers.

Some questions answered on this day,
Others waiting
For days beyond.
Life with God.

Continue reading about Nathaniel’s recovery here - Day 6-13