We have so much snow in Jamestown, and it was surprising to see the snow disappear as we drove up the I-90. There was almost no snow in Buffalo! We arrived at the Sister's Mercy Ambulatory Surgery Center and checked in. Matt wasn't taken back until nearly 1:30 pm, so we had a bit of waiting to do. I am so grateful for our tablet computers. Matt played the Samsung, Nolan played the Kindle Fire, and everyone was relatively content for the waiting time.
They called Matt back and we did the pre-op paperwork. Sister's Mercy is pretty great and gave Matthew stickers, paper, crayons, and a coloring book.
The staff remembered our family. Nolan had a floppy, vomiting, hypoglycemic attack before his bronch and 5th set of tubes, so we are a memorable group of people. They took Matt's history, which is not very extensive. It was nice to mark "NO" to hearing and vision problems, for example. I did tell them he struggles with constipation, but obviously that isn't related to tonsils and adenoids.
The anesthesiologist came and asked if he had any loose teeth - just the top front tooth is loose, and they said he might lose it during surgery. I also mentioned his heart murmur and said he had an echocardiogram the day prior, but we didn't have results. I said, "No news is good news, right?" The anesthesiologist responded, "I wouldn't assume that."
She listened to his heart and said it sounds like he has mitral valve regurgitation. Nolan has the same situation... he hasn't had an echo since his heart murmur developed, but I am interested to see what Matt's shows when it is back in the pediatrician's office.
We confirmed the surgical procedure (bronchoscopy and microlaryngoscopy, then tonsillectomy and adenoidectomy). The nurses brought Matt warm blankets and he snuggled in. He showed the anesthesiologist his drawing of Mars, and she was impressed that he knew his planets. She asked him what the closest planet to the sun was, and Matt said, "Mercury." Gotta love my space-loving boy. Then they rolled my sweet boy away into surgery.
While Matt and I were in the pre-op area, Dennis took Nolan to Panera Bread for some lunch. He brought me a cinnamon roll, which I wolfed down. I was a very hungry momma by 2:00 pm! At around 2:20 pm, our beloved ENT called our names and we went into the conference room.
"I have a video to show you," she said.
And I knew. I knew right then that Matthew didn't have apnea due to big tonsils and adenoids.
The video showed the camera snaking down our boy's airway, which was red and incredibly swollen. The base of his tongue and entire upper airway were thick and burned.
And then she got down to his larynx. The thick, floppy airway completely collapsed over his vocal cords every time he tried to breathe. It was a complete occlusion - the reason we don't hear much stridor from Matthew is because there is no air flow at all - his airway completely closes when he attempts to breathe.
Matthew has laryngomalacia and reflux. First diagnosed at age SEVEN. This is not the typical situation, as most infants who have laryngomalacia are born with it and it resolves by the age of 2 years.
She did take his tonsils and adenoids - the adenoids were occluding 50-60% of his airway, so it is good they are gone. The hope is that we can "buy" enough airway space with the removal of the tonsils and adenoids (and treatment with anti-reflux medications) that Matthew will have an improvement of his apnea.
We have been down this road with Nolan, however, and I am not optimistic. Matt's laryngomalacia is severe and I am sure we are heading down the road to a supraglottoplasty for him.
Soon we were called back into recovery and I was able to see my boy. He was crying as a reaction to the anesthesia and I was grateful the IV was pumping fluids into him before our long ride home. They gave him a dose of Lortab and he fell asleep.
We were on the road home by 4:00 pm, with lake effect snow creating white-out conditions. Matthew was exhausted and in pain. His most frequent comments were,
"This is not fair."
"Dummy surgery!"
"My mouth really hurts!"
I felt heartbroken for him. It is awful seeing your child in pain. By the time we got home, he was overdue for his medication. Dennis went to the pharmacy to pick up the prescription. Matt snuggled into a blanket on the couch and didn't move for the rest of the evening.
We put him to bed and were happy to have this day done and over with.
3 comments:
I'm still a little flabbergasted about the LM! Do you think it has always been present to this extent or do think it was milder or non-existent and has progressed as he's aged? I'm glad you had ordered his sleep study or else you'd never have known, probably!
It is so hard to tell, Kyla. I do think it has been there for a while, as Matt's physical symptoms (crying, exhaustion, zoning out) have been there for a while, and the disruption to his sleep architecture indicates he's had it for a while. It was just hidden.. his symptoms have been getting worse with age, though, and we knew SOMETHING was wrong. I'll write about how I knew he had apnea in another post. I was not as surprised as Dennis was, or even our ENT. I've suspected Matt had LM from last May. I even have a video of his stridor.
Oh no! Not Matt, too! That's so not fair!!!
As if I get to decide what is fair...
Julie
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