Friday, July 27, 2012

6 months Post-Op!

In general, January seems like 6 months ago.  But the details of January 27th are so engrained that it seems like it was just days ago.  Putting your 9 month old in the hands of a surgeon is scary.


I know I didn't stop praying all day.  Praying for Ezra, the surgeon, the other doctors, the nurses, the NERVE...if it wasn't for that facial nerve wrapped around the mass I might have been a little more at ease.  Surgery was supposed to last 3 hours, maybe a little longer.  "Don't get nervous if it takes a little longer," Dr. Rimell said.  I was doing okay at 3 1/2 hours, and still pretty good at 4 hours, but after that my stomach was in a knot.  After 5 hours and 1 minute our little man was finally in recovery.  The best news of all was that the nerve was completely intact!  The nerve that could have caused complete paralysis on the right side of Ezra's face had not been severed.  Thank you, Jesus!!

                                                    (1 day post-op)                                       (2 days post-op)

(2 weeks post-op)

We've had several post-op check-ups and at his 6 month appointment the ENT said we didn't have to come back; everything looks great!!  There is still some healing - the skin where the mass was has some internal stitches that are still working their way out and the incision has one stitch that is still working its way out.  The indentation caused from the removal will also fill in over time because he is so young. He can never get an Atypical Mycobacterial Infection again.  (Though I am quite paranoid around bird poop...I feel like I see it everywhere now!)

(2 months post-op)

(Today: 6 months post-op)

During the surgery, they ended up removing the parotid gland because it was in the way and part of the major mess that they found.  Removal of this gland can cause Frey's Syndrome, and wouldn't you know, Ezra has developed it.  It's nothing serious, just another very rare condition.  When they removed the gland, they saved the nerves that were in it.  These are salivary nerves and in some cases they "grow" into the skin causing the skin to turn red, and even sweat, when the person salivates.  So when Ezra eats he gets a red mark on his cheek, we haven't noticed any sweating so far.  (He was eating breakfast in the picture above so it's slightly noticeable, right above the mark from the mass.)  It's something that may or may not resolve itself over time.  Botox will temporarily fix it or there is a surgery to permanently fix it, but if it's not causing Ezra any discomfort (and it doesn't seem to be) we don't plan to do anything about it.  We'll just have to remember to let his teachers know about it so they don't think he's having some kind of allergic reaction during snack time!

Amazing how one day can be so vivid in our memories, isn't it?!  Though we will never know exactly how Ezra contracted this crazy infection, we are so thankful for the medical technology and doctors that were able to take care of it.

If you have more questions about our experience with Atypical Mycobacterium, please leave a comment or email me at thoner02k @ yahoo . com. You can read all my posts related to this here.


christy compton hall said...

Ezra looks great! I'm so glad to hear an update. I wouldn't do anything about that salivary nerve either... it'll just be Ezra's cool thing. Sorry about the Frey's Syndrome - your family will be in my thoughts and prayers.

Lisa said...

He looks great and its lovely to know he is doing well!! He looks lovely!! I'm really about that Frey's Syndrome... hopefully he'll continue to be fine!! :)

adrianne klein said...

Hey Anika... I have yet another question my daughter is about 2 weeks post op and there's still a slight lump there did Ezra have this as well??

Anika said...

adrianne...Yes, Ezra still had a lump at that point. They actually put him on an antibiotic (after they sent the mass to a lab to process it, they were able to identify a med that would help clear it up). Two rounds of that took care of the residual inflection that was leftover. Hope your your daughter is doing great! Such a crazy infection...I would love to know where and when Ezra picked it up!

adrianne klein said...

Thank you so much for your help: ) sorry time keep asking questions it's just nice to know someone else has gone through this...soo they are sending my little one to have a ct scan because it doesn't look like the meds helped... for surgery all they did was remove the stuff inside the lump but not the skin on the outside or anything like that it was a super small hole and no stitches now I am wondering if they removed everything that needed to be taken out: ( we will see! Thank you for your help again it really does help! I hope your little one is doing wonderful!

Anika said...

Adrienne...ask away! i wish i would have had someone to ask when we were going through it all...Ezra's surgery was so complicated because the infection was wrapped around his facial nerve. In order to save the nerve, they had to make a fairly large incision so they had room to work. The doc described it as "quite a mess in there". So if your daughter's infection wasn't around a nerve, it wouldn't surprise me that the surgery seems less invasive than Ezra's.

adrianne klein said...

Yea the ultrasound showed no nerves before surgery she just had her ct scan yesterday and we will find results out today at her follow up after looking at the before and after pictures I took pre medicine and just yesterday her "lump" Looks almost deflatted if that makes sense...I hope that means it's going down: /

Tammy said...

My daughter may have this and she's having surgery this Monday (hers is on her chest above the collarbone). When you said, "he could never get this again," what did you mean?