I've had a few questions lately about what exactly Nathan's surgery will entail and that made me realize that most people have no idea how big of a surgery this is. So I figured I would explain what his surgery is going to be and reasons why it might not work. That might help all of you understand why Matt and I aren't always as optimistic about the outcome of surgery. Before I can do that you need to understand why he has the trach, so bear with me this could be a long one.
Why He Has The Trach
During the surgery to repair his esophagus the surgeon was dangerously close to the nerve that controls your vocal cords. We didn't know it going in but a big risk of esophageal surgery is vocal cord nerve damage, Nathan had worst case scenario. The nerve that controls his vocal cords was shut, paralyzing his vocal cords in the closed position.
When we breathe our vocal cords open and allow air into our lungs. Then whenever we swallow our vocal cords close and protect our airway so the food goes into our stomach rather than our lungs. Nathan's vocal cords are closed and prohibit him from breathing from above his vocal cords. His trach (as all are) is below his vocal cords so that he can breathe.
Nathan will first be put under general anesthesia. Then a few different IV lines will be placed, a PICC line and a regular IV. He will need more than one IV site because it's a big surgery and there is a HUGE risk of bleeding, so he will more than likely need blood during surgery. They can use one IV for blood and another IV for other things. Putting the IV in will take a while, he's a very hard stick after all the IV's he had in his life.
Once the IV is in the actual surgery will begin. First a general surgeon (hopefully his pediatric surgeon Dr.B) will take rib cartilage out. Then the ORL doctor will use the rib cartilage and place it between his vocal cords. The rib cartilage will be used to "prop open" his vocal cords. Opening the vocal cords will give him a wider airway and allow him to breathe without the trach, hopefully.
Once the vocal cords are opened the ORL doctor will close his trach site. That means closing the opening they created in his trach and closing the stoma on the outside. This will leave him with just a little scar on the front of his neck that eventually we would never see. Who has ever see Catherine Zeta-Jones former trach scar?
I know it doesn't sound like much but keep in mind that this will be our little 3 year old boy's 14th surgery - in 3 years. Each time he has surgery he develops more and more scar tissue and that has effectively turned his abdomen into concrete (his surgeon's exact words), the scar tissue is tough to get through and remove. It makes surgery more difficult and makes everything take longer.
Once Nathan is out of surgery he will be taken to the ICU for at least a week. While he's in the ICU he will be heavily sedated, probably medically paralyzed, for at least the first week. He is scheduled to go back to the OR on September 1st for a trial extubation. At that time the ORL doctor will use a camera and look down his throat at the surgical site, as long as it looks like it's healing they will trial an extubation.
Inability to Breathe - the ORL doctor said that some kids who had been trached for a while just panic once they are expected to breathe without the trach. Nathan has been trached since he was 4 months old, he's lived virtually all of his life with the trach so this is a very real possibility. Nathan has never reacted well to change, or when he's expected to do new things. He used to throw up at the mere sight of his physical therapist. He's not great with new things so hopefully he does OK with his "new" breathing.
Bleeding - while the general surgeon is operating he will be open for a while. That means there will be a lot of bleeding, it could be too much. This is nothing new for Nathan, it wouldn't be his first transfusion and I'm sure it wouldn't be his last. Then once ORL takes over they are operating VERY close to a major vein in his neck that runs right behind his trachea. Ever since he was trached there has been the risk of his trach "rubbing" through his trachea and opening up that vein causing a major bleed - that risk is still there during surgery while the surgeons are in there manipulating things. This is the one that really scares me. This one means there is a very real risk Nathan wouldn't make it out of surgery. I'm living in denial about it and I prefer to stay there.
Protecting his airway - Once Nathan has been extubated and has proven that he can breathe on his own it turns to safety. His vocal cords will not move at all, they won't be able to protect his airway. He is going to have to compensate for that with his swallow technique. He will need to be able to swallow safely for this surgery to be called a success. The first hurdle is his own saliva, if Nathan can't even swallowing his saliva safely this surgery is a complete failure. When I say "swallow safely" that means swallowing without anything going into his lungs, if something does go into his lungs that is called aspiration. He can't aspirate - that's how people get pneumonia. If he can handle his saliva we will move onto actual eating. The hope is that Nathan will be able to swallow safely, even thin liquids. The thinner the liquid is the harder it is to swallow, especially without vocal cords. If he can handle thicker liquids that is just fine with us, he will just be on thickened liquids for a while. If he can't even handle his saliva he will need to be re-trached. It will simply be safer for him to have a trach than live with constant aspiration. A re-trach surgery will mean at least 2 additional weeks in the hospital, and a devestated mommy.
Being a kid - Nathan hasn't breathed without his trach since he was 4 months old, at that time he was immobile and didn't do anything. Nathan has no idea how to run, jump and play and breathe effectively. He will need to prove to the doctors that he can hold his oxygen saturation while being a kid. This will be done in the weeks after he is extubated. He will be on a monitor that will monitor his oxygen level while he is doing things.
Nathan needs to be able to breathe on his own to go home.
Nathan needs to be able to safely swallow at least his saliva to go home.
Nathan needs to be able to hold his oxygen saturation to go home.
It doesn't sound like a lot but it is. There are HUGE goals for him, goals Matt and I have had since we first heard that Nathan needed to trach, when he was 4 months old.
When Nathan first got the trach it was devestating to us. It completley changed the course of all our lives, we were suddenly the parents of a child with chronic medical needs. We were a family who depended on Apria (HATE THEM) to keep Nathan safe with his medical equipment. We were a family who couldn't go on vacation without first sending a few boxes full of equipment. We want to be a family who can travel without medical stuff. We want to be a family who doesn't have to live with the constant worry that comes with chronic medical needs. We want Nathan to have as normal a life as possible, and for us that means no trach.
We are hopeful that the surgery will work but aren't counting on it. Read over those possible complications and understand why Matt and I aren't "putting all our eggs in one basket" We want to be realistic, we want to be prepared. Nathan has never had surgery without a complication. We are just expecting the complication that comes with this surgery to be one that causes the trach to go back in.