Tommy's Story~ Tracheal Reconstruction and the Unexpected

In April, 2008, Tommy was 19 months old. His heart was holding steady and his lungs were slowly improving, so the decision was made by his doctors to begin a many step process to getting Tommy's trach out permanently. Tommy was given a round of antibiotics at home to keep him well and then he was admitted in late April for a procedure called a laryngo-tracheoplasty, or LTP. It's sometimes called an LTR for laryngo-tracheal-reconstuction.

Tommy was taken to the OR and his ENT harvest a small piece of cartilage from Tommy's ribcage. Then, he lasered out all of the narrowing (stenosis) in Tommy's airway. The cartilage was inserted as a stent to keep the airway open as it healed.

The reason Tommy needed this surgery was because when he was an infant and could not make it off the ventilator, the frequent removal and reinsertion of the breathing tube caused his fragile airway to scar shut above his vocal cords. The extent was not known until a month after his trach was placed. There are 4 grades of stenosis ranging from mild to 100%. Tommy happened to be a grade 4, 100% closure. He had no airway at all other than his trach. This is one of the many reasons we were so diligent with his constant care and why I never left his side. A plug of mucous or accidental removal of his trach would have been a very sudden death by suffocation. Not something I was willing to risk.

Tommy spent two days in the hospital, with the first night in ICU for observation. The next morning, he was playing with his IV tubing so I had to go find him a toy before he got the idea to bite through it. He'd done that with his feeding tubing so I knew he was quite capable. We got moved to the cardiac floor that afternoon for another day or two of recovery. My Mother in Law had come to stay with us for a while, and was with me at the hospital. We took turns with him in ICU due to their no sleeping at bedside policy. His recovery was really amazing. You would have never known he just went through surgery. He was up and playing just 24 hours later.

Tommy's surgery was on a Friday, and by Monday, he was ready to come home. We all went out to dinner as a family and enjoyed being together, but something wasn't quite right. My husband, Rob, had been feeling ill for a while. He couldn't breathe when he slept and had taken to sleeping upright on the living room couch. That evening, he told us he thought it was time to see a doctor because it hurt to breathe. We discussed going to his doctor the next day but in the end, he thought it would be best to go to the emergency room. My mother in law was quite capable of taking care of Tommy's needs and our other boys, so she stayed with them and we left for the ER.

When we got there, every couple of steps, he would stop and gasp for air. I tried to get a wheelchair, but he insisted just to give him a minute. What should have taken 2 minutes to walk from our car to the door took 10. I told the nurse that my husband was having trouble breathing and chest discomfort. Up until this point, everyone thought he had a nasty upper respiratory infection because he was also coughing quite a bit. He was taken straight back and put on a pulse oximeter (that is the little flashy light that goes on your finger..it measures the amount of oxygen in the blood). His oxygen was only 94. Red flag number one. After describing his symptoms, he was taken to a room right then and there and the doctor ordered an EKG. Red flag number two. He was put on a heart monitor and his heart rate was well above 300. Red flag number three.

It only took 10 or 20 seconds for the EKG to run and I overheard the tech whisper "Afib". I started cursing like a sailor under my breath. My husband was in serious trouble, but I couldn't let him know. Perk of having a child with a heart defect is knowing anatomy and terminology of the heart. I didn't have to hide it for long because the doctors began flying into the room. They got right to the point. He was in congestive heart failure and atrial fibrillation. In other words, his heart was not efficiently pumping and the top two chambers had begun to quiver rapidly instead of beat. We were told if he had not come in that night, he would not have come in at all. The doctor gave him two days to live without intervention.

Rob was admitted to MUSC's new Heart Center. The program wasn't new, just the building. It was state of the art and he was in very good hands. He was put on medications and oxygen. He lost 20 pounds in fluids in the first 24 hours. He was given medications to keep off the fluids, another to slow down his heart and try to regulate the beats, and blood thinners. He was diagnosed with sleep apnea the moment he fell asleep for the first time on the monitor. His oxygen levels were about 86% when he was sleeping. The sleep apnea is what damaged his heart.

He had head to toe ultrasounds looking for blood clots and finally after three days of not being able to successfully control his heart with medications, he went for a trans esophageal ultrasound. They looked at his heart through a probe placed down his throat. When the all clear was given that he did not have a clot, his doctors stopped his heart and shocked it back into regular sinus rhythm. He spent a total of two weeks in the hospital. I stayed every day with him and my mother in law brought the boys to visit every day. We hooked Tommy up to the wall oxygen next to his daddy so they could stay as long as they wanted. The staff encouraged family being around to improve recovery and spoiled the boys with ice cream.

I did Tommy's trach care at the hospital. I had access to everything I needed and all the oxygen we could use. His incision did look a little off, but it turned out to be okay after a few days. I am so glad my mother in law was able to be there. I don't know what I would have done with Rob in the hospital and Tommy recovering as well. It was a very hard two weeks. Rob spent another two weeks at home before going back to work on light duty, but things were different. Life was more precious.

My mother in law had to go back to KY to her job, so we were alone again, both of them in their own kinds of recovery, both related to their hearts and their lungs. Rob's heart will never recover. CHF is a progressive disease. It can be treated, lifestyles changed to accommodate, and medications to control the symptoms, but he will never be "healed".

Tommy's recovery was much easier. About three weeks after his surgery, we would head back to the hospital for the stents to come out and we would find out how his airway looked..