Friday, October 19, 2012

Three PE Tubes and a Floppy Airway

We are home, thank goodness. Even though the placement of tubes is always a quick procedure, the day is still long. Nolan, of course, had to throw a few curve balls into the mix to create a slightly longer surgery than anticipated.

Firstly, he couldn't receive his overnight feed before surgery. He was as floppy as a rag-doll before surgery.

Then he started to retch and vomited some bile in the pre-op area. The child doesn't do well when he has to go for long stretches without food. Fortunately, they took him back to the OR at around 11:00am. An hour later, the ENT came to talk to me.

His right ear was infected and when the new tube was placed, the ENT could see that the fluid was still behind the eardrum. She made a second incision to try to suction the infected fluid out of the middle ear space, but the area behind his eardrum isn't communicating - for some reason, there are two separate sections of retained fluid. To solve the problem, she placed a second tube into his right ear. Now both sections are able to drain, and hopefully we'll achieve a dry ear. She also replaced the tube in his left ear. He is now sporting three tympanostomy tubes - I'm not sure how common that is, but at least his right ear will be able to heal from the chronic infection.

The sleep laryngoscopy showed severe laryngomalacia. His epiglottis was tacked up in the last operation, and it still looks good. The epiglottopexy worked and it no longer flops over his voice box/airway. The arytenoid folds, however, are large and floppy again, and completely occlude his airway. I got to watch a video, and they look just as bad as they did before his first supraglottoplasty.

We return to the ENT on November 26 to discuss our options. He will not outgrow the laryngomalacia, and we're not even sure if another surgery would work. The ENT has only had one other child who relapsed after a supraglottoplasty in the history of her career. There isn't a lot of history to predict what will happen if we attempt another surgery for Nolan's airway. Besides surgery, the other option is to keep him on mechanical ventilation at night for the rest of his life.

The ENT also wants to send us to another ENT, who is familiar with cochlear implants. With Nolan's right ear sitting at 75dB, she wants us to become familiar with the technology and at least say "hello" to the surgeon. His left ear is still well out of candidacy range, but tends to follow the right ear over the course of time. It is currently sitting at 60dB rising to 50dB, but if it drops then he will have two ears in the severe range.

We have a lot to research and consider before his follow-up appointment. In the meantime, I am going to take a nap. Or drink some coffee.



Kyla said...

Oh man! What an eventful day.

I think he probably does have hypoglycemia with the way he has responded to feeds and how he has responded to NOT getting his feed. If you guys decide to start checking him...the Reli-On Confirm meter and strips from WalMart are the way to go! Cheap and reliable.

As for the airway issues, yikes! Don't you hate it when these kiddos insist on being the exception to the rule? Agh! I hope you guys can gather some good info to help you decide how to best help him.

dlefler said...

We are so very, very tired. I really think the hypoglycemia is a possibility. He's got the red rings under his eyes, and he always does that when he spills ketones - it is a big warning sign with him. I might get some strips to do spot checks, though with the overnight feeds he does well (and I don't plan on NOT doing the overnight feeds unless he has surgery, etc.)

Nolan's issues have never followed the expected path. It is frustrating. I have a lot of research to do before we make a final decision on surgery. I want to bang my head into a wall.

Herding Grasshoppers said...

Dear friend, praying for comfort and wisdom. And for his ear to heal... two tubes in one ear!

Julie G

dlefler said...

Two tubes in one ear.. and the cultures just came back (from Monday) with MOLD growing in addition to the bacteria. Oy.