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

Two Years Post-Op Update

Two Years! It's been two years since Ezra had surgery to remove the atypical mycobacterial infection that had settled around the facial nerve along the right side of his jaw. He is doing great; both the incision and the spot where the infection was are continuing to heal nicely.

You can see the faint line of the incision along the front of his ear, then under his earlobe and towards his chin...it stops about halfway between his ear and chin. There is still a slight depression from the gland they removed above the end of the incision; the doctor said that because of how young he was this should completely go away. He developed Frey's Syndrome because they removed that gland; he had just had a glass of apple juice before I took this picture, so the redness you see on his cheek is the effect of the Frey's Syndrome - it comes and goes with varying intensity depending on what he eats...fruit and candy cause a stronger reaction. It doesn't hurt him at all, we just have to make sure anyone who takes care of him knows it isn't an allergic reaction!

The actual spot where the infection was is in such a hard place to get a picture of. You can kind of see it here...right where his shirt, neck and jawline meet. Over the last few months we have really noticed it change from red to a light pinkish color. His doctor said we could bring him back for more surgery if we didn't like the way it healed up, but it seem so unnecessary to put a child through cosmetic surgery when it is something that very few people notice. 

 Ezra also had a "crooked smile" for a couple months after surgery due to the facial nerve being disturbed, but there are no signs of that now! Just a mischievous grin and twinkling eyes!

Last night we wanted to celebrate Two Years Post-Op, but it has been so cold here (cold enough for school to be closed the last 2 days!) that we decided to just stay in and have a little ice cream rather than venture out for a treat!

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.

Hope it is warmer where you are than it is here! Thanks for stopping by!

~Anika

Atypical Mycobacterial Infection: One year post surgery

In some ways the past year has flown by and I feel like we were just checking into the hospital for Ezra's surgery with anxious stomachs.  In other ways, it seems like SO long ago.  Ezra was a only 9 month old baby then.  Now he's a walking, running, climbing, talking, eating-on-his-own toddler!

Here we are in prep-op on surgery day - 1/27/2012

We are so thankful everyday that his surgery and recovery went so smoothly!  We will never forget how blessed we are to live with modern medicine and to live so close to such amazing Children's hospitals - had we not been satisfied with the first doctor we saw, there would have been at least 3 other places we could have went all within an hour of our house.

(He napped while the doc was prepping him.)

Ezra has healed up well.  His incision scar is barely visible - even if you are looking for it.  The red spot left on his skin from where the infection was shrunk from the size of a Quarter to the size of a Pea.  It seems to continue to shrink bit by bit each month.  His doctor said that if it stops shrinking he could remove that small section of skin, but I think we will give it a little more time to heal on it own.

The only way I can get a picture of it these days is while he's asleep.

Ezra also developed Frey's Syndrome from the surgery.  (He gets a red area on his cheek when he eats acidic foods, such as fruit.)  Not much is known about Frey's because it's so rare.  We aren't sure if he will have this for a few years or the rest of his life, but I don't think the area seems to get as red as it used to.  So maybe it will just go away!  It's nothing that hurts him though so we will just wait and see!

Here's his best "cheese face" for you!

So thankful that both boys have been very healthy over the past year...one ear infection each and pink eye for Ashton was all we had to deal with since the crazy, how-on-earth-did-my-baby-develop-that, Atypical Mycobacterial Infection!

(You can read about his diagnosis here, his hospital stay and initial recovery here, and his 6 month post-op update here.)

If you have more questions about our experience with Atypical Mycobacterium, please leave a comment or email me at thoner02k @ yahoo . com. 
~Anika

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.

(Pre-Op)

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.
~Anika

Surgery Update

We are thrilled to say that we are home and everything went wonderfully!

• We didn't hit rush hour traffic on the way to the hospital.
• Ezra fell asleep during pre-op so he wasn't screaming from hunger pains even though surgery was delayed about 45 minutes.
• The hospital staff was amazing!
• Surgery took WAY longer than we thought it would, but they were able to keep the facial nerve completely intact! His surgeon said it was quite a mess in there.
• The incision is shorter than I anticipated it would be.
• Within hours after surgery, Ezra was a happy guy!
• We realized how truly blessed we were after seeing other families dealing with much more challenging issues.
• Ezra had very little pain after surgery. We didn't even have to get a prescription for pain meds when we left the hospital.
• They were able to remove his drainage tube before we left so we don't have to deal with it at home or make an extra trip back to the hospital this week to have it removed.
• So far, he doesn't rub or scratch at the incision so we don't have to keep the splints on his arms.

Here's a post-op picture...Steri-strips, left over marking pen, some swelling and a little bruising

Happy reading a book with Daddy and Ashton

Crawling all over the house with his little smirk! You can barely tell anything was done from this angle.

Thanks for all your thoughts and prayers for Ezra, our family and the doctors. We felt them all - especially during the extra 90 minutes of surgery when we were anxiously waiting to hear from the doctor. Keep praying that the rest of recovery goes just as well!

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.

~Anika

Atypical Mycobacterial Infection

Our little Ezra is way to cool for your run-of-the-mill ear infection or any other kind of typical childhood illness! Somehow, he managed to contract an Atypical Mycobacterial Infection. What's that?? Well, it's something you get from drinking unpasteurized milk (which Ezra hasn't) or from eating bird poop!! The infection has an incubation period, so that means he contracted it when he was 3-4 months old...not sure how he managed to get into bird poop at that age!

See the red lump on his jaw line? It just started turning red last week (which is the normal course of the infection) and it doesn't bother him at all; he doesn't poke at it and it doesn't hurt him when we touch it.

This is the short version of how we figured out what he had...

On November 28th, I noticed a lump on his jaw line and instantly freaked out. Lump=Cancer in my brain! The next morning I called to make an appointment with his pediatrician. Unfortunately, he wasn't in that day so we had to see a different doctor...I won't go into the details, but that was a BIG mistake!

After 3 weeks of appointments including an ultrasound, blood work, seeing a pediatric ENT, a CT Scan, a Fine Needle Biopsy, a TB skin test, and a chest x-ray, we FINALLY had our diagnosis. An Atypical Mycobacterial Infection. It requires surgery, but it is NOT life threatening and that was a huge answer to prayers.

We are lucky enough to live within an hour of several amazing Children's Hospitals and the one Ezra will have surgery at is brand spankin' new! His doctor/surgeon is awesome, and we are confident that he will do a fantastic job. The main risk to the surgery is damage to the facial nerve that runs along the jaw line. Ezra's doctor has never damaged the nerve, though! Surgery is in a week. Any prayers that you could say for a successful surgery and smooth recovery would be greatly appreciated! I will update you all as soon as possible after surgery.

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.

Thanks a bunch!

~Anika