Here is the smile we’ve all been waiting for! Thank you all for your kind words of support, which came primarily via Facebook. After reading some of your comments, I realized how depressing Anthony’s medical history sounds. Yes, he has had some difficult times, but really, he has only had four serious medical issues in his 21 years, which is really good for a kid with such severe cerebral palsy.
Obviously, the abuse that caused his disability to begin with was his first challenge. That was back in 1994. His birth mom was mentally ill and abusive. We don’t know who Anthony’s birth father was, not sure his mother even knew. Anthony was placed in foster care at 17 months of age and then he joined our family in 2000. It was amazing how easily Anthony fit into our family and he had many happy years with no medical problems.
In spite of his disability – or perhaps because of it – he is the happiest kid you’d ever meet. He loves people, he enjoys being out and about. He loved school when he was able to go and his smile can light up a room, as you can see by the photo above. He is currently a favorite here in the ICU at UMass.
His other three medical problems were mention in the previous post: 2006 spinal fusion, 2010 intestinal volvulus / J-tube and 2014 pneumonia / tracheostomy. Between these times, he was happy and for the most part healthy.
Although doing the laryngotracheal separation was a difficult decision, as long as Anthony recovers and gets back to his typical happy self, it’s well worth the risk, because his quality of life will be much better. Nothing is more important than being able to breathe easily. Breathing is good.
Hello,
I happened to run across your posting about your son Anthony while I was searching for information about Laryngotrachial Seperations. I have a 20 year old son who struggles with a lot of the same issues as your son. He got a regular trach a few years ago, but now the doctors are really pushing for him to have the Seperation surgery. I was just wondering, are you happy that Anthony had the surgery? Have there been any complications? Would you recommend it? I would very greatly appreciate any information you have, and you sharing your experience.
Linda
The good news is that the laryngotrachial separation was a good decision for Anthony. It solved his reflux, aspiration, and apnea. We chose to by-pass the regular tracheostomy because with the amount of secretions Anthony has, this would be messy and wouldn’t totally solve his aspiration and very bad reflux. I think if we had gone with a regular tracheostomy, we would be where you are now. So we basically skipped that step. Plus Anthony did not speak, so no longer being able to speak was not a problem for him. I would definitely recommend this surgery if the trach alone is not working well for your son.
That said, Anthony has had complications due to his unusually small trachea and scar tissue developing in his airway. Theoretically, you can go without a tube with the separation, much like a laryngectomy patient, which will also make life easier. But for Anthony with is short, fat neck and small trachea, he needed a tube to keep his airway open and that tube caused scarring, which is common when you have a foreign object (a trach or larngectomy tube) in the airway. Anthony seems very prone to scar tissue. Hopefully, none of this will be an issue for your son.
We are currently looking at the next step which is removing his larynx. I honestly wish they had done this to begin with when they saw how small Anthony’s airway was, but hindsight is 20/20. The separation can theoretically be reversed, the laryingectomy cannot. Although we knew we would never be reversing Anthony’s separation, it’s worth noting.
For Anthony, it might actually be too late to have the larngectomy now if the scar tissue is chronic, opening his airway more by removing the larynx might not help if he still needs a tube to keep his airway open. He had a CAT scan last week and will be having a bronchoscopy soon to evaluate the extent of the scarring and possibly do a laser procedure and if the surgeon things he would be able to go without a tube if they remove the Larynx, they will do that too. Otherwise, we will need to stick with a tracheostomy tube and deal with the scarring as it comes up. This usually involves laser surgery. Eventually he may need a stent. One step at a time…
All of this said, the laryngotrachial separation is a good solution. If all goes well, I think you will be happy with the results. Anthony just had some unfortunate complications. There are no guaranties with any surgery, but I would make the same choice again.
Hope this helps. Do let me know how it goes. You can email me privately if you like at cindy.bissell@gmail.com