The Long Road to Decannulation (Getting out his Trach tube)

With Tommy's surgery just a little more than a week away, I wanted to explain a little about how things might go. He will be admitted to MUSC on Thursday, April 24 sometime in the evening when a bed is available so that he can receive IV hydration. Then Friday morning, he will go to the OR where Dr. White will perform a procedure known as a double staged Laryngotracheoplasty. LTP for short.

Here are a couple of good websites that explain it well. These both explain the single stage, in which the trach tube is removed after surgery. Tommy is having the double stage, which just means keeping the trach and taking it out a later date.
http://www.entforkids.com/Pages/PatientEducation/622.html
http://www.tracheostomy.com/resources/surgery/ltp1.htm

Basically, Dr. White will take a section of Tommy's rib cartilage to use as stents in the airway. He will then remove the scar tissue in Tommy's trachea, essentially forming a new airway. He will then use the stents to hold open the new airway until his trachea heals. Tommy will be in the ICU for at least 7 days following the surgery. Tommy will NOT be getting his trach out as a result of this surgery.

Approximately two to three weeks after he is released from the hospital, we will return for another admission. Tommy will go back to the OR to have the stents removed (probably through the mouth, so no more incisions). He will stay for a couple of days observation. Here's where things become blurry. We will need to wait another two or three weeks to see what his airway is going to do. It could collapse, form more scar tissue, or simply stay open and patent.

At this time, Tommy will need another trip to the OR for a good look around at his new trachea. This will also be about the time we are ready for another heart cath, and eventually another heart surgery. Heart surgery, or rather intubation for the surgery, is what caused the scarring in his airway to begin with, so I'm very hesitant about moving forward with having his trach removed until we're out of the woods with his next heart surgery.

Back to the trach. Once we have the all clear and his trachea holds up on its own, he will have a cap placed over his trach. This will cause him to breathe through his nose and mouth instead of the trach. He will be able to taste and smell for the first time! The goal is to move up to wearing it during all waking hours for 30 days. Once this goal is reached, then we can move on to actually having the trach taken out. This is called decannulation.

It's a long, drawn out process, but it gives us the best case scenario to make it to our goal of getting out the trach. Especially if we are factoring in heart surgery somewhere along with this ordeal. Even with it taking so long to reach our goal, we will get a small reward. After the first surgery, Tommy will be able to find his voice! I'm looking forward to hearing those first sweet sounds in the next few weeks more than anything!