Tuesday, January 27, 2015

Three Years Post-Op Update

Today marks 3 years since Ezra had his crazy Atypical Mycobacterial Infection removed! He is old enough now that when we show him the pictures and tell him the story about the day he kind of understands it...as well as an almost-4-year-old can. Ashton actually asks about it and comments on it more than Ezra does. Anyway, everything is looking great with the incision and the infection site. His Frey's Syndrome from having the gland removed still flares up when he eats, but that's really no big deal as long as we remember to tell people it's not an allergic reaction.

Here he is a week or so after surgery.

This is a month or so post-op.

And here he is just a couple days ago! The incision is almost invisible and the infection site continues to fade.

The lighting here exaggerates the depression left from the Parotid Gland they removed (that's what causes the Frey's Syndrome - a red blotch on his cheek from the salivary nerves that are still there, but are no longer connected to the gland.) I had intended to get a picture while it was flared up, but that didn't happen. 


And here's his beautiful smile! As I have said before, we are beyond thankful that the surgeon and his amazing team were able to remove the infection without damaging the facial nerve. 

Every month or so, I get a comment or an email from another mom whose child has been diagnosed with this. While I am no expert, I remember wishing I knew another mom who had been through this to talk to or ask questions to. So if that's you, please don't hesitate to comment or send me an email at thoner02k @ yahoo . com. You can also read all my posts about Atypical Mycobacterium here.

Thanks for stopping by! 
~Anika

3 comments:

Bruce Brandon said...

was happy to find your blog with information on what your Ezra went thru. My fiancee's son Jacob developed a bump back at Thanksgiving that was initially treated with antibiotics to no effect. The doctor in Chattanooga then sent us to a specialist in ATL who diagnosed it as Atypical Mycobacterial infection. I had googled a little but never felt I was seeing the right things (so much talk of it involving HIV, the lungs, possible tuberculosis) and your pics were the first I saw of it on the jaw line and clearly made the connection to the lymph node (though Jacobs presents farther up the jaw line towards the ear). The antibiotic treatment was miserable for him and he was taken off and instead of hoping it might be a longer term treatment, the doctor decided that surgery sooner will be better for him. I am still searching for some medical type photos of the infection itself, as I'm having a hard time conceptualizing WHAT are they going to surgically remove? Is it a layer of infect skin? Is it a solid mass? Is it something like plaque on a tooth? Very interesting. Jake is 2 1/2 and did not take the sonogram very well and will now have to have a sedated MRI so the doctor can have a more precise idea of the location of the infection which is involving facial muscles, but so far, is just close to, facial nerves. His infection is getting so large, I worry it will burst and he will have to deal with possible staph as well as the bacterial infection, but am putting faith in the good doctor. His mom and I get married in 4 weeks, and right now the positive is that because they will do surgery in May and not sooner, he can enjoy the beach in Florida and the hotel pool which I presume would have been off limits if he were post surgical. I was happy to see the results of the scarring as well, I have imagined an acne like pock mark after they cut the part of the infection closest to the skin, maybe with his age, like your son, the skin will heal itself and erase the scar naturally within a few years. I was going to offer a picture of Jake but see I can't do that here. You can find one on my facebook (bruce brandon, Chattanooga, a profile pic of his mom and I together) or I have asked friends for help with donations to cover costs of trips to the hospital and tell Jakes story at gofundme under the title Fun For Jake. I will show this blog to his mom and I'm sure she will take great comfort in reading it and I will also look for your other posts about atypical mycobacterial infection. Again, thank you for sharing, isn't the internet wonderful? Best of luck to Ezra!

Anika said...

Hi Bruce,
Glad you found my little blog. I still am not sure what the infection looked like. Our doctor always referred to it as a mass. Even with as close to bursting as Ezra's was, they managed to save the skin. It is certainly an interesting infection! Please don't hesitate to email me if you or your fiancé have questions. Thoner02k at yahoo dot com

Congrats on the upcoming wedding!
-Anika

Sammy Yang said...

Hi Anika. I think my son is having this AM infection, that's what the doctors suspecting now after 2 rounds of different antibiotics. I'm seeing infection disease doc next week and will have them diagnose. It's the infection in front of ear, close to nerve:( I looked on line, looks like there is an option of incision and curettage instead of complete excision. My question is why your doctor didn't put him on medicine but went on surgery while there is risk of facial nerve damage and scar?