Mar 12, 2009

Airway Results from Laryngoscopy

Ainsely's vocal cord area. Still a bit swollen.

Suprastomal collapse around the trach.

Ainsley has been doing well since her Nissen Fundoplication in October 2008. Her upper airway around the false vocal cords had been completely swollen shut. Within weeks of the surgery we saw improvement when she was scoped in the otolaryngologist's office in November. Then again in January it was even a little better yet. She had been wearing her PMV (speaking valve-requires exhaling via mouth/nose) all day unless she was sleeping so our new otolaryngologist gave us a cap which covers the trach completely making the patient breath through the nose and mouth. Since January she has been able to wear it a few minutes at a time most days, which was encouraging.

So it was with contained excitement that we waited in the surgery waiting area today for the results of the laryngoscopy hoping for some information in the long saga of Ainsley's mysterious airway problems. Unfortunately there is no easy answer. The swelling, although better after the fundo, isn't completely gone. Since we don't know why it's there, we can't really do anything to treat it.

He says the vocal cords don't move real well likely due to scar tissue that built up from being intubated for 5 weeks when she was born. He could do a cricoid split surgery that would divide the cartilage but there is a chance that the scar tissue would reform and not really help. Plus there is a risk of causing aspiration problems with this surgery. So it's not a miracle solution. If we want to go that route he feels the swelling has decreased enough that there is room to do it with the laser and it could be done without an incision by going in with a scope. But since things have gotten better over the last few months he wants to wait 3 more months and then take another look before deciding.

He saw some suprastomal collapse at the trach insertion point. You can see in the pictures. He isn't worried he said because she still has room around it to breath. He may not be worried but I am concerned that to get the trach out it will require a LaryngoTracheoPlasty (LTP) where they repair the collapsed area of the trachea. There are many kids on the support forum whose children have required an LTP to get their trachs out for exactly this problem that is caused by the trach itself. Maybe he's not worried because she's not ready to get the trach out and this can be repaired and is a fairly common surgery in the trach world. I just hope not to go down that particular road.

The bigger problem is the obstruction at the vocal folds. He acknowledged that the ball is in his court at this point. Either he figures something out or we just wait and hope for a change. Those are the options.

Our very last ace in our pocket is Botox. She had her salivary glands injected with Botox today to reduce drooling and possibly aspiration of saliva. There is some small chance that aspiration of her own saliva could be contributing to the airway swelling. So now we wait and see if there is any improvement. We've already noticed that she is drooling less. If we start to see an improvement in the amount of time she can be capped then we'll know it is helping her airway. However I think it's wishful thinking that this will do anything but it's worth a shot.

So we wait. 3 more months. Please hope for all our sake that something changes in that time.

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