Sunday, March 20, 2011

weekend of ear woes...


Happy Spring!

It has been a weekend of unprecedented ear woes. We have generally had very good luck on the ear front, both bionic and biological. I guess aside from the need for cochlear implants, the CSF gushers, the branchial cleft cysts, and the tubes... okay, wait. I guess everything is relative. I just mean that Lucas does not have recurring ear infections, etc. and that we rarely lose or break any of his equipment.

Except this weekend.

Friday night for the first time, we spent time on a CI scavenger hunt. It was short lived, but it was really the first time that we've been worried about finding the elusive 2nd CI. It was in the living room the whole time, but Lucas insisted that he dropped it off the deck. Boy did I breathe a sigh of relief upon finding it.

Then on Saturday, just when I was thinking about blogging about how well Lucas has been doing with wearing both ears in the car, we arrived home from his doctor's appointment (more about that later), and he had taken the new one off and pulled it apart. When I put it back together, it would blink normally, but then when I put it on his head it was a solid orange. Not good. I asked Lucas where it had been, and he pointed to his nose. Lovely. We put it in the dry and store for a few hours during his nap, and that seemed to do the trick, but it was working sporadically again today. Great. We'll see how it acts this week. Good thing we're going to CHOP on Tuesday, because I can get their opinion about which part is damaged, if it's still giving us trouble.

Back to the doctor reference. Friday afternoon I noticed that his right ear was swollen, right on the same site as the branchial cleft cyst removal incision, just like last month. On Saturday morning, it was worse. Since I don't like to mess around with anything related to his ear, we went to see his pediatrician. The doctor agreed that there's some kind of infection in there, and prescribed him more antibiotics. I can't say that I'm a fan of antibiotics every few weeks, but my opinion has changed since having a child with significant medical concerns. There's no messing around. I'll be calling the ENT early tomorrow morning to beg request to be seen by someone while we're at the hospital on Tuesday.


I removed the ear hook from his right ear, and am solely relying on wig tape to keep the processor on his ear. It's working just fine. When I put Lucas to bed tonight, I noticed a pin size hole forming on the incision, so I put some antibiotic ointment on it. It's pretty tender, and he doesn't like me touching it. This has happened now twice in 2 months. Either the branchial cleft cyst is back, or something is wrong with the surgical site almost 5 months post-surgery. 

It certainly could be worse... we could have actually lost his CI, or it could be completely not working. We really have lucked out with our equipment so far. And Cochlear's customer service is really spectacular. I just had his coil and magnet replaced on his new ear this week, because the magnet got stuck somehow and I couldn't twist it anymore. It was replaced in 24 hours. 

I'm just hoping that whatever is going on with Lucas's ear doesn't result in another surgery. Pretty please?

3 comments:

Leah said...

Oh, no - I hope and pray the cyst clears up with nothing more than antibiotics. It will be good to get into the doc. :-(

I'm sorry, but I had to laugh when you wrote about him pointing to his nose. Classic! Hopefully the CI will be back in working order shortly (it will be a funny story someday - even if it isn't right now!).

Melanie said...

Ugh. Hope the meds do the trick.

Christian and Lily's Mommy said...

I too was laughing about the CI in the nose. These stinkers!