When Cody was a baby, he often times had food come out his nose. He was stuffed up all the time, had ear infection after ear infection and things just didn't seem right. As he got a little older, he never really cooed or made many noises and his speech was very delayed. When he started to talk, we noticed his voice was very nasal sounding and he couldn't figure out how to get the air to come out his mouth but instead it would come out his nose.
We saw a doctor at Boston Children's Hospital when Cody was 2 to evaluate his palate and try to figure this out and help us make Cody healthier. He wouldn't touch him, examine him or do anything to help us.
Our next step was to get a second opinion at Mass Eye and Ear. Immediately, the ENT doctor there told us Cody had velopharyngeal insufficiency (VPI) and would need surgery pretty quickly to help improve his health and quality of life.
"VPI is a failure of the body's ability to temporarily close the communication between the nasal cavity and the mouth, because of an anatomic dysfunction of the soft palate or of the lateral or posterior wall of the pharynx."
Basically when Cody talks or eats, the air and food goes up his nose and causes infections. He had 9 ear infections in 3 months and is currently on his 7th set of ear tubes.
At 2 1/2 years old, Cody went in to have a pharyngeal flap done. Before doing this, they did an MRI to check placement of his carotid arteries and they looked fine so we went ahead and scheduled the surgery. When the surgeon got in there, though, the arteries were way more in the way than the scan showed. After a little while of examining Cody under anesthesia, we were called down to discuss our options. Going ahead with the flap was not an option at the time because it was very risky and he was still so little. So, instead they did a furlow palatoplasty. This basically lengthened his palate, blocking off some of the space going up into his nose. We knew at that time he would need a revision at some point but we were unsure of when. After that surgery, Cody did so much better. He was healthier and his ear infections slowly disappeared.
Well here we are today with my mystery boy. We've had many follow ups recently with the surgeon to discuss our options. Cody's speech has come a long way but I notice when he's around other children his age and even younger it is a struggle for other's to understand him. His eating is also not getting any better and we were recently told he will not outgrow the aspiration. So, I stepped up and pushed for some kind of answer to change his quality of life. We decided now was the time to do the revision and try to help Cody.
Yesterday, once again he was scheduled for a flap. I was a nervous wreck because of what happened last time but I have faith in this doctor. An hour after the procedure started, we were called down to talk to him. Just like the first palate surgery. He showed us a video of inside Cody's mouth and right where he had to cut to make the flap you could see his carotid arteries pulsating. I was nauseous and lightheaded and had to sit down. The surgeon told us it was very risky to do this surgery with Cody and there was a chance he could have a stroke, infection or bad bleed. From there, they decided to do a CT scan to get a detailed image of it to see which artery and it showed us that this is probably a procedure Cody will never be able to have. So, he was under anesthesia for 3 hours and all he had done was new ear tubes. We were told his ears are very small and there was some fluid and scarring on his ear drums. At least he has fresh clean ears for the winter!
So, we're back at square one but I am so thankful for an amazing surgeon who knew not to attempt this. Our next step is to try a palatal lift. This will be something Cody would have to wear in his mouth during the day when he's talking or eating, similar to a retainer. It will have the same results as a flap but much less invasive. The trouble is, we don't know if he will tolerate it. We will need to bring him back to get a molding done while under sedation and we will go from there.
Keep praying for my Cody, he's been through more than he should have at this age and is the toughest and bravest kid I have ever met. All he wanted yesterday was his pudding, so when he woke up... he got 3!
We saw a doctor at Boston Children's Hospital when Cody was 2 to evaluate his palate and try to figure this out and help us make Cody healthier. He wouldn't touch him, examine him or do anything to help us.
Our next step was to get a second opinion at Mass Eye and Ear. Immediately, the ENT doctor there told us Cody had velopharyngeal insufficiency (VPI) and would need surgery pretty quickly to help improve his health and quality of life.
"VPI is a failure of the body's ability to temporarily close the communication between the nasal cavity and the mouth, because of an anatomic dysfunction of the soft palate or of the lateral or posterior wall of the pharynx."
Basically when Cody talks or eats, the air and food goes up his nose and causes infections. He had 9 ear infections in 3 months and is currently on his 7th set of ear tubes.
At 2 1/2 years old, Cody went in to have a pharyngeal flap done. Before doing this, they did an MRI to check placement of his carotid arteries and they looked fine so we went ahead and scheduled the surgery. When the surgeon got in there, though, the arteries were way more in the way than the scan showed. After a little while of examining Cody under anesthesia, we were called down to discuss our options. Going ahead with the flap was not an option at the time because it was very risky and he was still so little. So, instead they did a furlow palatoplasty. This basically lengthened his palate, blocking off some of the space going up into his nose. We knew at that time he would need a revision at some point but we were unsure of when. After that surgery, Cody did so much better. He was healthier and his ear infections slowly disappeared.
Well here we are today with my mystery boy. We've had many follow ups recently with the surgeon to discuss our options. Cody's speech has come a long way but I notice when he's around other children his age and even younger it is a struggle for other's to understand him. His eating is also not getting any better and we were recently told he will not outgrow the aspiration. So, I stepped up and pushed for some kind of answer to change his quality of life. We decided now was the time to do the revision and try to help Cody.
Yesterday, once again he was scheduled for a flap. I was a nervous wreck because of what happened last time but I have faith in this doctor. An hour after the procedure started, we were called down to talk to him. Just like the first palate surgery. He showed us a video of inside Cody's mouth and right where he had to cut to make the flap you could see his carotid arteries pulsating. I was nauseous and lightheaded and had to sit down. The surgeon told us it was very risky to do this surgery with Cody and there was a chance he could have a stroke, infection or bad bleed. From there, they decided to do a CT scan to get a detailed image of it to see which artery and it showed us that this is probably a procedure Cody will never be able to have. So, he was under anesthesia for 3 hours and all he had done was new ear tubes. We were told his ears are very small and there was some fluid and scarring on his ear drums. At least he has fresh clean ears for the winter!
So, we're back at square one but I am so thankful for an amazing surgeon who knew not to attempt this. Our next step is to try a palatal lift. This will be something Cody would have to wear in his mouth during the day when he's talking or eating, similar to a retainer. It will have the same results as a flap but much less invasive. The trouble is, we don't know if he will tolerate it. We will need to bring him back to get a molding done while under sedation and we will go from there.
Keep praying for my Cody, he's been through more than he should have at this age and is the toughest and bravest kid I have ever met. All he wanted yesterday was his pudding, so when he woke up... he got 3!
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