I know that I haven't written in forever and a day. I have way too much to catch up on. But we had a very interesting day at Children's Mercy today that I need to write about. Writing helps me to work through my "stuff" when dealing with new information.
To start off Truman has been doing really great...in general. We have had some major leaps forward including the fact that he has really started walking! This is a huge, amazing, fabulous and crazy step in his development. (Get it...step?) He had been taking a few independent steps here and there but he really couldn't keep it up much longer than that. He turned 2 last week (yes, I will blog about that later) and suddenly he decided it was time. He still walks a bit like Frankenstein but he is really trucking. He now prefers to walk and will make that choice instead of going down to crawl. He isn't strong enough to stand up independently yet so he has to get somewhere to pull up. So amazing.
He was super sick at the end of January. We had 3 full weeks of misery (mama was sick too) with strep, sinus infections and bronchitis. Poor guy was just miserable. Three rounds of antibiotics later he seems to be on the mend.
Today we went to "the" Ear, Nose and Throat specialist at Children's Mercy. The doctor was recommended by multiple doctors we go to as a person who specializes in kiddos with muscle disorders and developmental delay. To be honest I was still a bit skeptical about the whole ENT Department at Children's (see early post) but I finally gave in. After waiting an hour we finally were introduced to Dr. Latz, who turned out to be just as great as everyone said she was.
She listened to our whole, long medical story. She was genuinely interested. She did the regular checking around and realized his ears were really full of wax. He has always had the waxiest ears! She said she couldn't see anything so they needed to be cleaned out before we did anything. She said the extra wax was actually good because it helps to prevent outer ear infections. Truman has actually never been diagnosed with a single ear infection! There have been comments by doctors about his ears being hard to look in because of the wax but she was the first to say that it was impossible to see anything.
So off we go to clean them out, under a microscope. Very gross yet very interesting. After the cleaning she looked in his ear with this super scope thing that also blew a little bit of air into the ear canal. The air helps to open up the parts and see behind the ear drum. Again...no other doctor has ever used one of those bad boys...including his ENT in Lawrence. She immediately saw some fluid behind the ear drum.
She decided we needed to get a hearing test...right then and there. Off we went and after an hour of waiting (can you tell I am tired of waiting today?) we were put in a little room together. First she put this little machine thing up to his ears to test them for ear drum movement. Both ears had normal "volume" but neither ear drum was moving. Shock #1.
Then she went in the other room and we sat in front of a stuffed alligator that had glowing eyes. On each side was a box with a stuffed animal that drummed inside. She began to speak with her voice coming from different places in the room. When he looked in the right direction the corresponding stuffed animal would light up and start drumming. Then the alligator’s eyes would glow to get his attention back to the center of the room. VERY INTERESTING! I had always wondered how they tested kid's hearing. It isn't like we can tell him to raise his hand when he hears the beep! After the talking part she started having sounds play around the room as well.
Shock #2...Truman didn't look for many of the sounds. He was sitting in my lap and I would wait for him to turn his head...and nothing. It seemed like the lower then tone the less he looked.
The technician came in and told me that he had failed that part of the hearing test. Wow.
The next test put a little tube thing in his ear attached to another machine. The machine measured higher pitched sounds and again if the ear drum moved.
Nope. He failed on his left ear. Shock #3. The good news was he actually passed on his right ear! Yea.
Back we head to the room with my mind going nuts. My kid can't hear? What? How is that even possible? He responds when talked to. He babbles and laughs. He watches TV. He knows his name and my voice. But he also won't turn and get his photo taken when I try to get his attention. He isn't talking words and has very few consonant sounds. All of the consonants he uses are non-explosive (i.e. m and n not c or t). He has always had balance issues...thought to be caused by his "low muscle tone."
When the doctor came back into the room she was actually not surprised. She already knew that he wasn't going to do well on the hearing test. The good news is that the hearing loss doesn't seem to be caused by nerve or physical issues. She thinks it is all caused by a major buildup of fluid behind his ear drums. He has major fluid and has NEVER HAD AN EAR INFECTION? Why the heck does he have fluid in his ears? She really wants him to get tubes in his ears to drain the fluid. She thinks that it will completely solve the hearing issue as well as help his balance.
Off we go to have a scope stuck down his nose so she could take a look at the palette and vocal cords. The first thing she sees is that Truman does indeed have a submucosal cleft in his palette. We have had 3 different doctors tell us he doesn't...including the doctor who sent us to the ENT. The cleft seems to be small but it is there all the same.
The next thing she finds is a Laryngeal Cleft or a small cleft in the larynx. The opening is what has caused him to have the nasal reflux and made him fail the last swallow study.
Crap--I never wrote about that. We did another swallow study almost last month and his nasal reflux and aspirations were actually worse than they were before. He went from being able to swallow a "nectar" consistency to having reflux on applesauce. Not a good thing. We were put back on thickener but this time it is a "honey" consistency which is as thick as you are probably imaging. Not fun. It also means no more ice cream, popsicles or anything else we can't thicken before it is swallowed.
Back to today. The Laryngeal Cleft has probably always been there. When he had his tonsils they were so big that they covered up most of the hole. When they were removed the hole didn't have anything to stop the fluid from flowing. This cleft is fixable. Basically she will go in with a syringe filled with this gel stuff. She injects the gel into the hole and it expands to fill up the hole. Hopefully this is a permanent procedure but we don't know that for sure. The great news is that it should stop all of the food/fluid from going back up into his nose!! No more choking, eye running, sinus infections, etc.!!!
She also saw that he has an "immature voicebox." I am still not exactly sure what this means. I understand that it is a muscle and it goes along with his low muscle tone...but I really don't understand how this affects him. Or if it can get better. Or if it has anything to do with the other stuff. We had so much going on that this somehow slipped thru the cracks and I will need to revisit it on our next appointment.
She can do the tubes and the cleft injection at the same time. It will mean another time under anesthesia and an overnight stay at the hospital. She wants us to wait a bit because the hospital is full of really sick kids with the flu and RSV. She doesn't want to expose T to a secondary infection because his immune system sucks. It would not be a good thing for him to end up with a major case of the flu after surgery. She also wants to recheck the fluid to make sure that it is really sticking around. It could be there from his previous illness at the end of January...but she really doubts it. So we will go back for a recheck mid-April with plans for surgery at the beginning of May.
So my child can't hear. He has a cleft palate and a hole in his larynx. What next?
We are looking at 2 different surgeries. The palate cannot be done at the same time as the hole and tubes. Apparently they don't usually fix them until around 4 years old. They might push up the timeline if he continues to have medical issues with nasal reflux caused by that space being there. She doesn't know how much problem it really is causing. Fixing the other parts will let us she just how bad it really is.
Lots of information. Still processing. My heart is breaking that my little man has not been able to hear all of this time. It is also terrifying. I can't imagine my son growing up without being able to hear. But I am not going to go there right now. I just can't.
The doctor thinks that he will get the tubes and the hole fixed and show us just how happy he is by talking and gaining muscle strength when he has the ability to balance. Wouldn't that be amazing??
Longest post ever...I wish I had something witty to say to end it. But I am exhausted and overwhelmed. What else is new, right? I am going to sleep on it and hopefully will be ready to deal in the morning.