Tuesday, March 12, 2013

Eustachian tube dysfunction

Blerg... that's a fancy title for "Jax needs an ear-tube".
Jax had his ENT follow-up yesterday and the doctor said there is still fluid sitting in his ear, and given how badly he failed his last hearing test, he wants a tube in it. I was surprised because I assumed that since there weren't any actual ear infections over the last 2 months, he'd be just fine, but the doctor said that his Eustachian tube just doesn't drain well, and hearing loss off and on adds to his speech problem. Apparently children over the age of 3.5 should be able to drain fluid enough to not cause hearing issues.
The doctor asked how Brady has been, and I mentioned that he's been snoring a lot over the last few months, so the doctor wants to see him Friday. If Brady is still showing fluid hanging out in the right ear too, he may be recommended for a tube as well (and we'd obviously want their procedures done at the same time). Brady failed his hearing test on his right ear in November, so the doc wants to keep monitoring that one as well.
He thinks it may be a genetic thing between the boys and I since I have hearing loss in my right ear due to scar tissue from repeated infections. It's definitely odd that it only affects all of our right ears.

Well, this wasn't the news I was hoping for, but if it keeps the boys from having permanent hearing issues or troubles, I guess it should be done. And God knows they need their hearing at perfection given their speech disorder.

The doc said he typically removes the adenoids when putting tubes in, but given the Apraxia issue, he won't touch them. He doesn't want it to add to their speech issue. He seems to feel the boys may have some soft palate mistiming and Hypernasality, even though they were not Dx'd with VPI when we saw the Cleft Palate Team. I swear this stuff just makes my head spin.
Either way, I noticed later on Jax's visit report, his list of 'issues' included the term "Congenital disorder of Pharynx". Um, no clue what that is. The other terms were obvious, Eustachian tube dysfunction, Feeding difficulties, Short stature, Feeding Disorder, Gastrostomy Status (G-tube).

Then Jax and I had a couple of hours before his Feeding/GI team followup. We had a lunch date in the cafeteria and looked at all the fish that he hadn't seen in awhile.

His Feeding Team followup went okay but not amazing. Jax gained over a pound with his double tube-feedings despite his couple bouts of illness. His BMI is still too low, so we can't ease up on any calories. So he must remain on the double feedings until his next appointment with the GI specialist and dietician in 2 months. Ugh. But at least he's on the right path. But he'll have a weight re-check and feeding session in one month to make sure things stay on track.

Jax met with the head of the Feeding department since his regular therapist at the hospital was out, and she remembered us from when Jax was a baby. She LOVED seeing him and said that despite his small stature, he looked so good to her. She did a feeding session with him, and really liked his skills with drinking and smooth food, but she was definitely taken aback a bit when she found out he hasn't made substantial gains in chewing over the past year.
She did a lot of mushy foods with him, and had to really coach it through to get him to swallow it (rather than pocketing in his cheeks, under tongue etc). When she gave him a piece of hard cracker, I knew it was coming... he puked all over her.
She thinks Jax needs more repetitive therapy rather than his just once weekly session he gets now. I told her that Jax's insurance actually stopped last week and required further information from his private therapist, so she is going to speak with the private therapist to try and work together to problem solve this issue.
She is going to try and get a 2-3 day outpatient program for Jax, where I'd bring him in for lunch and dinner to work on chewing. Those few days would be crazy, but it would be worth it if it could get Jax over this hump he's been stuck at for so long.

The private therapist texted me today saying Jax's insurance came back approving 6 sessions and he was pretty upset about it and was appealing it. I faxed him Jax's visit report from the Feeding Psychologist, GI specialist, Dietician and head of the department stating his extreme need right now, so hopefully that will help.

Hopefully the rest of the week is uneventful, and we'll see if anything is up with Brady's ears on Friday.


1 comment:

Momma Bird said...

I am not sure if you meant you really didn't know about what the "congenital problem of the pharynx" meant or not but in case you really aren't sure, it basically means he was born with a problem with the pharynx, which is basically the back of the throat, which would be the area of his soft palate so it would make sense that the doctor you saw wondered about his soft palate and hypernasality...they all relate. That and his speech problems. I could go on and on (as you may remember I am a speech therapist) but I am not sure if you were just making a passing comment :) Best of luck to you. The boys are getting so big and you are doing an amazing job.