All in Airway and Respiratory

It Knocked the Bounce Right Out of Him

Nathaniel and I have been lazy all morning. Actually, we've been lazy all week. He was released from the hospital Monday, but it was not until Thursday night that I felt we were on top of his frequent vomiting. Wednesday night was rough. Concerned he was spiraling down toward dehydration again, I messaged our house church (small group at church) and pastors to pray. Slowly over the course of the day, he improved. He felt well enough to join his big brother, Peter, in a hammock outside on Thursday afternoon. Peter will be working in Alaska this summer as a supervisor at a Boy Scout camp. The hammock is newly purchased to take with him. I think the quiet afternoon will be a special memory for both of them.

The Trachs on My Windowsill, Hospitalization, and Lemonade

I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill.  Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud,  this is beyond medically complex. This is life and death."

Spring Wonders

I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and publish whatever comes at the end of it.

Here goes - ignore spelling and other such errors.

Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask: "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now; Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer means a potential oxygen deprivation accident. We drive alone with him. We have left him with his older brothers to run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference, Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life, getting on with life, enjoying life moments.

Another way that life has changed is that Nathaniel has had more respiratory illnesses in the couple months since surgery than he did in the six months prior. We knew this would happen. The freedom to live life means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, less pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery. 

Laryngotracheal Separation Surgery: Day 6-13

Nathaniel was discharged from Cincinnati Children's on Saturday, February 13. During our visit to Cincinnati last September for the tonsillectomy, we became friends with the crews at the Blue Ash Fire Department. They offered to provide a few dinners for us this trip. A delicious steak dinner, and teddy bear for Nathaniel, was delivered to our hotel Saturday night to celebrate both Valentine's Day and Nathaniel's successful surgery.

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.

Laryngotracheal Separation Surgery - Day 3

There have been a few post surgery issues to cope with that have made recovery not fun. No complications, just not fun. Nathaniel's IV needed restarted; I have decided though I strong description, 'hate' is how I feel about the word occluded when it flashes from an IV machine. Nathaniel has also had some difficulty with voiding and has needed multiple catheterizations. Hopefully these minor issues will continue to improve. 

We learned last week that our friend, Maverick, was traveling to Cincinnati and having surgery this week too. Maverick and Nathaniel were featured in a St. Louis Post Dispatch last spring when we met doing trach training for first responders.  Maverick's room is four away from Nathaniel's room, and he came by this morning to share some toys. It was good to see Nathaniel smile during the visit.