Wednesday, April 22, 2009

In Search of an ENT

Problem #1: Jack doesn't swallow. Jack pools mega amounts of secretions in the back of his throat (despite constant oral suctioning).

Result: backwash (for lack of a better word) into eustachian tubes resulting in chronic drainage of yucky goop out the ears. (one ear has a tube, the other ear has a permanent hole.)

Resolution: deep suctioning of ears to get out goop (been on antibiotics for weeks with no improvement).

Lead Character: Otolaryngologist (aka ENT).

Problem #2: Unable to find local ENT that I can tolerate. First ENT never once talked to Jack like he was a human being. Second ENT (who I really thought would work out) told me "I can't be the doctor you need me to be given the nature of my practice" (his exact words ... as if his practice is different from anyone else's practice. Apparently, the parents of his other patients don't care if he takes a week and multiple calls before they get a call back or don't mind waiting two months for a new trach template to be sent to their DME). Third ENT has a wait time of no less than one hour every single appointment (and he sees both kids and adults, which I don't like).

Potential Solution #1: Suction out his ears myself with my very own suction machine. (my pediatrician didn't think that was a good idea).

Potential Solution #2: drive 1500 miles to St. Louis to see the ENT that I like and who treats Jack and me with respect and compassion. (not that urgent or life threatening of a problem to justify the trip -- although, I'm tempted.)

Potential Solution #3: find local ENT number four. (I have my feelers out, but it's not looking good so far.)

Problem #3: I'm damn hard to please.

Potential Solution: Deal with it!


Hope said...

You aren't too hard to please. This is your son and he should have the best care. I don't have any advice other than to move to Cincinnati. I've heard there's a Dr here that may know a little about these kiddos;)

Sorry, I'm not much help. I'm fighting my own fight here as well (insurance, of course).

I'm thinking of you and pray you get some answers/help.

Rachel Marini said...

I wish you could somehow see Gabe's ENT, he is amazing and so nice! He treats Shaun and I, for some reason, like we know something and is just plain nice to Gabe. If only he was located in Arizona!!!! I might have to call his office today because our medical company hasn't sent Gabe's 4.0 cuffed bivona trachs in 1.5 months and they say the trachs are on back-order from the manufacturer, so I needed to see if Gabe could go up to 4.5 uncuffed. If I do speak to him I will ask if he knows anyone out west!! I truly hope you are able to find someone soon.
What size trach does Jack wear?


worthy said...

There is absolutely nothing wrong in wanting the best for your child. Hope you find someone soon. Maybe someone on the trach board may have a suggestion. Unfortunately we are way to far away!

Ann said...

Rachel - Jack wears a Bivona 5.5 TTS (cuffed); extended length (55M).

Hope, unfortunately, Dr. Cotton wouldn't be of much help to us because he is in the business of getting trachs out, not keeping them in!

Jamie said...

i clicked on your blog through mikan's. i must have been drawn to the title of your post on her blogroll as my husband is an ENT (in st. louis nonetheless). i would love to at least try and help if i can. i'm not sure who you see (and like) in st. louis but if you let me know where you live i can see if i can get a good referral for you. my email is best of luck.

shaffersouth said...

Maybe our ENT would fly out to see YOU. HA! He's good, but he's not that good! Did you have Dr. M out here? I hope your referrals turn up someone great!

Ann said...

I like your idea Jenny :) If it was still Winter in STL, I just might be able to convince our STL ENT to accept a paid trip to Phoenix! Yes, we see Molter. (Forsen was our original ENT until he left SLCH to go to St. Johns).

The Marangella Family said...

OK Ann let's start from the beginning...end your search now and get in the car....there are NO ENTs in Phoenix that even come close to resembling a doctor who gives a s***! St. Louis here you come!

Faith said...

Don't you find that ENT's are the kookiest docs out there (no offense to the gal whose hubby is one) nonetheless they are probably among the most brillant of the crop, but I have yet to meet one with good "bedside manner."

I agree with the others, and fyi Denver is just 16 hours away! ;)

(and to be honest- not worth the drive! But shhh..but you didn't hear me say that).

The ear suctioning must be an ordeal- I can't even imagine.

Once again, you handle every challenge with great tact, humor, strength- and no doubt-that, "God is good" brew. :)

Hoping your ENT luck with turn,
Jen :)

Melisande said...

How about CHLA? Or SanDiego? That's not as far as STL.

I'm sending good ENT vibes your way!

Gretch said...

Boy I hope you find an ENT,,if you are hard to please that makes me hard to please,,I would be in the same spot as you had I encountered those docs!!

Dana said...

OH, This is not a fun process. I hope you can find someone who you love and trust. I wouldn't worry about feeling like you are hard to please either. Jack needs your voice. He needs someone who is good with him.

Keep searching. Good Luck.