Today was Ella's VPI (Velopharyngeal Insufficiency) clinic with the ENT in Sioux Falls.
Velopharyngeal Insufficiency, as best as I can understand it, is a condition where the child has trouble moving or closing the soft palate during speech, causing air to leak into the nasal passage during speech production. Basically, as you speak, your palate moves to the back of your throat and needs to close all the way in order to create the suction needed to make certain sounds. Someone with an insufficiency wouldn't be able to close that gap, causing air leakage into the nasal cavity and consequently hypernasality and speech difficulties.
To test for this we first had an evaluation with a speech pathologist who met with Ella and listened to her speech, rating each letter she pronounced and determining if what she heard gave her reason to move further with the testing. It did. The next step was a video nasopharyngeal endoscopy where the ENT inserted a scope into Ella's nose that had a camera on the end. We were able to watch her palate on a tv screen and see if it was closing the way it should during speech. It wasn't.
And so it was determined that Ella does indeed have Velopharyngeal Insufficiency.
There are 2 different treatments of VPI. If the gap is small they can do an injection which would swell the pharyngeal flap in the back of the throat, helping to be able to block off the flow of air during speech. If it's a large gap a more extensive surgery is needed to move tissue into the pharyngeal flap and create a wall of sorts that would assist in decreasing airflow. Ella has the more severe type.
One of the concerns with this surgery is building up the wall too much, thereby increasing the risk of sleep apnea since she would still need to be able to breathe out of her nose while asleep. In order to decrease this risk a tonsillectomy is required before the VPI surgery.
So as of right now our plan is this.. Tonsillectomy surgery is scheduled for December 12. At that time the ENT will remove the tonsils and also the tube in her left ear. He will clean out the impacted wax and assess if there is middle ear fluid in her right ear. If there is, he will insert a new set of tubes at that time. Then in February she will go back for the VPI surgery to build up the wall on the pharyngeal flap. She will need to stay a night at the Children's Hospital to monitor her breathing during sleep and make sure the wall isn't too large. After that we will do another hearing test and hopefully be able to determine if hearing aids are necessary.
I have so many emotions about this diagnosis.
First of all...
I really wasn't prepared for this. I knew there was a chance she could have VPI, but the only thought I had given it was IF she did have it, it would most definitely be the less severe one, requiring a simple injection which she would need to be sedated for, but would work out well since we need to get that tube out of her left ear anyways.. If there was a teensy thought in my brain that she would need the more extensive surgery, I had NO IDEA she would have to have her tonsils removed in a separate surgery only weeks earlier. That was a bit of a blow..
Relief that maybe we've found an answer. A reason as to why her speech isn't progressing the way we want it to. As much as we don't want to have to put her through surgeries, it's nice to have something tangible that can be "fixed" instead of the constant "well... we don't really know why" we too often get.
Obviously. Even though these aren't particularly risky surgeries, any surgery comes with a chance of complications and that is only multiplied when you throw in genetic syndromes and kids who like to defy every rule in the book. I've also learned that any sickness with Ella is 10x worse than the other kids and I remember the last tonsillectomy recovery to be pretty darn awful so that's going to be a fun week. Or two. In addition, getting Ella to drink enough water on a regular day is a battle enough, I can't even imagine what she's going to be like after throat surgery. Twice. And our past relationship with dehydration is a bit rocky..
Should I schedule the surgery before Christmas or wait until after the holidays? I don't want to ruin any holiday fun, but I also want to get started and get it over with. Will she miss her Christmas party at school if I do it now? For the surgery in February will she miss her Valentine's Day Party? Does it matter?
Excitement about the potential that this could be a game changer for her. If she was physically incapable of making certain sounds because of her structural anatomy, fixing that could open up a whole new world. Also, the tubes and ear cleaning could open up hearing possibility, potentially reducing the need for hearing aides and improving her speech as well. She has been so talkative lately and even coming up with stories from school to tell me randomly, some of which I can understand and interpret, and some of which I have to smile and nod. I know she wants to communicate more and I am excited to see how this helps her.
She has been in speech therapy since nearly the day she was born. We have pushed her and encouraged her and practiced these sounds over and over, trying in vain to get her to pronounce things correctly.. and guess what? She couldn't. Physically couldn't. She was trying her hardest. Doing her best. And she couldn't.
I mentioned one time that I had considered not going to the CdLS Conference last year because I was feeling guilty that I didn't think we needed the medical counseling or intervention that others did. But it was at that conference that the Developmental Pediatrician first mentioned VPI to us. If we hadn't been there.. if we hadn't met with her, how long would it have took us to notice this? Would we have ever? Could she have lived her entire life with speech difficulties that could have been fixed? So thankful we were there.
So lots of emotions to process over here. Praying for wisdom and strength that we're making the right decisions and all the surgeries go as planned. It's going to be a rough couple of months around here but we are clinging to the hope that it will all be worth it in the end!