Friday, September 27, 2013

Friday Fun Fact

Did you know that actually orally eating a food containing garlic has nothing to do with your breath smelling awful after you consume it?

In fact, that terrible odor is not even phased by an esophagus having been surgically altered to prevent reflux.

Nope, a delicious stew containing tomato and basil and onion and GARLIC, once blended, will give an individual offensive-smelling breath even if it is tube-fed directly into the individual's belly!


who knew?

She's lucky she's cute :)

PS - Thank you so much for all your prayers!  Recovery is still going amazingly well.  We've had a couple of rough nights of sleep, but I suspect it's just finding the balance between Emma still needing pain meds vs needing to back off on the pain meds because they are upsetting her tummy.  We'll figure it out!  Praising God for a mostly very happy little girl!

Friday, September 20, 2013

So what happened with that little ear?

So on one hand, surgery was a tremendous success!  The Not a Tumor is gone, no re-growth, no more damage.

And recovery is going pretty smoothly, also, all things considered.  The first couple of hours after surgery were pretty rough, and we're pretty drained both emotionally and physically, but overall it's not nearly as bad as we anticipated.  She's needing pain meds and has periods of fussiness, but it's nothing compared to last time we had this type of surgery.  After the last ear surgery like this, her tummy was VERY unhappy with the amount of pain medicine she needed, and this time things are going MUCH better.  To have her have actual periods of happiness and periods of contentment only a day out of surgery is unheard of for this little girl, but today it's what we've been seeing.  Praise God!

The ease of the recovery, though, is partially due to a disappointing outcome of this procedure.  The hope was that if our Fabulous ENT did not find any more evidence of cholesteatoma, he would begin to re-build the tiny little bones in her middle ear that help facilitate hearing.  His plan was to synthetically reconstruct some of those bones, assuming he found no re-growth.

However, once he was actually in there, he found that there simply was not enough real estate.  The space was just too small, so he made the call that it would not be beneficial to re-build those bones.  I agree with the decision for several reasons.  First, Emma's ears have a tendency to grow granulation tissue and there doesn't seem to be high chances for success of placing synthetic bones in such a small space and not having the body try to fight them off.  Second, any manipulation we do in anything other than perfectly ideal conditions increases the chance of growing a new cholesteatoma.  And finally, she's always going to need hearing aids anyway.  If she didn't have underlying hearing loss, the cost/benefit analysis might be different, but she needs amplification under even the best conditions, so risking the ear health to try to improve hearing doesn't seem worth it to anyone involved.  She can still hear, we just need to re-test her hearing once she's all healed and adjust her hearing aids accordingly.

The short version of the story?  He opened her up, took a look around, and closed her back up again.

So we could look at the situation and say that Emma had the side of her head opened up for no good reason, but I am absolutely NOT feeling negative about the surgery.  Looking at the situation as a whole, I refuse to be disappointed.

I'm glad we don't have to wonder if that disease was still there.  We know it's gone

I'm thankful that Emma is showing us how strong she really is.

I'm very proud that her tummy is in such a better place.  I firmly believe that her new "real food" diet is helping her cope with all the stuff life is going be throwing at her and it's good to be able to see the positive results.

And I trust her ENT that he made the right call.

I feel like the event just brought out so many blessings.  She's doing so very well. 

Our God is so big, so strong and so mighty, there's nothing our God cannot do.  He sustains her (and us), and He shows us his tangible love by surrounding us with wonderful people to support and pray for us, and He never leaves our side.

blessed :)

Tuesday, September 17, 2013

More medical details

... as much as I understand, anyway :)

So last December, you may remember that Emma went in for an ear cleaning, and came out with one less ear drum.  A cholesteatoma (known around here as Not A Tumor, because it acts like one but isn't one) had basically eaten away at her middle and inner ear.  She had surgery in February to drill out the disease from the mastoid bone and reconstruct her ear drum.  That surgery was successful, but recovery was painful and difficult, partially because she was also recovering from c diff that had her hospitalized earlier that month.

This week's surgery is a follow-up.  There is no way to tell without going back into her ear whether or not the Not a Tumor was completely removed.  This will be another "open ear" surgery, and our Fabulous ENT will be removing any disease he finds.

I'm not clear what will happen next for sure.  IF he goes in and finds that this disease was truly completely removed 6 months ago, and therefore has not re-grown or spread, then he will try to re-build some of those tiny little bones that facilitate hearing.  If he finds more disease, then obviously he will remove it, but I don't think he can do any re-building until after we are sure the Not A Tumor is really gone.

Does that mean that if he finds disease this time that we're back for Round 3 in 6 months, opening up her ear again?  I'm not sure.  I think that's a question we don't know the answer to until we see what he finds.

And what does this mean for Emma's hearing?  Again, I'm not sure.  It's been a really long time since Emma's ear health has been stable, so it's been a really long time since her most recent sedated hearing test (ABR).  My understanding is that her hearing aids are currently set to a "best guess" setting based on her reactions in a sound booth test (behavioral hearing test), but if you know my daughter, you can be as confident as I am that those settings aren't completely accurate. But at the end of the day, who cares?  If this setting helps her and she tolerates it, then ... great.  Right?

But Emma is much more healthy going into surgery this time around, so we are praying that recovery will be less difficult.

I can't tell you how touched I am that people have asked questions about the details of this surgery.  As usual, I offer these details with complete humility.  I am not a doctor (but I play one in real life, ha ha), so I could be wrong in my understanding of this procedure or of the possible outcomes.  And we all know that curve-balls are Emma's specialty, so who knows what we're going to learn once we open her up? :)

Thank you so much for your prayers!

Monday, September 16, 2013

The phone call I may or may not have made this morning

Emma has had over a dozen surgeries in her little life.

This one is not the most major or the most risky, nor is it the most unexpected.

(we knew 6 months ago when our Fabulous ENT had to remove the cholesteatoma (aka Not A Tumor) from her ear that a second surgery would be necessary to make sure it wasn't growing back)

But for some reason, it's been throwing me for the biggest emotional tailspin.

I AM DREADING this surgery!

This does NOT get easier ...

The having to say goodbye part, I think, is what's actually getting much much harder.

She still does not have any way of understanding how this process will actually help her in the long run, but she IS starting to understand "goodbye" more and more.  In fact, lately, she's been starting to use a sign with me that sort of approximates the idea of "I'll be right back".  When I have to run down to the laundry room and Emma is playing upstairs, I always get her attention and tell her with a sign that I will be "right back".  Pretty reliably, lately, she has been signing it back to me, confirming that she understands that I'm coming back.  And she's also been spontaneously using the sign to ask me what's happening next.  We went to a friend's house this weekend, a place where she has been dropped off before without Mom and Dad staying.  We walked in and I was chatting and Emma was roaming a bit, and then she found me and tilted her head a bit and looked into my eyes and signed, "right back?"  I am CERTAIN that she was asking me to confirm that, if I was leaving, I would be right back.  I shook my head no, and told her that I was staying.  She signs that question when I drop her off for Sunday School as well, and once she even did it when Daddy put her down for bed instead of me ... I think the bedtime one was asking if I was coming to say goodnight.

A child with that level of understanding is MUCH more difficult to send away into surgery.

She trusts me.  She trusts that, when I say I'll be back, I'll be back.  And she is searching for clarification when she's uncertain. 

How can I possibly clarify this to her? 

And, more importantly, how can I leave her?  Yes, it's sort of a situation in which I will be "right back," but in the meantime something is going to happen to your little body that is going to cause you pain when you wake up.

So I may or may not have made a phone call today ... to Emma's Fabulous ENT ... asking if this truly was the only option ... are there other things we could do to follow-up on the cholesteatoma that are less invasive?

Whiny subtext:  I DON'T WANNA DO THIS!

He was very patient in explaining why scans and other options aren't effective in ruling out re-growth and that if we waited for symptoms to show up we may be waiting too long and it could cause more damage.  This is protocol and I have to trust it.

He told me nothing I didn't already know, but ... still ... I DON'T WANNA DO THIS!

The only thing that's calming me down when I start crying about it is this promise:  I cannot be with her during her surgery, but her Heavenly Father will NEVER leave her side. 

I am holding tight to that promise.

Thursday, September 12, 2013

Updates - another surgery

Yup, once again it's been awhile, but a lot of stuff has been going on around here.

Charlie's first month of first grade has been great.  He's growing and thriving and making lots of friends and re-connecting with friends from last year and it's wonderful.  He's also in soccer at the moment and we're gearing up for "musical season" ... rehearsals for our church's Christmas musical started yesterday, and we're excited for another great year with that.

And Emma is doing SO SO well!  She's back in school now and doing great.  Wearing her hearing aids full-time still, and doing wonderfully with the transition to a Blenderized Diet.  There were some concerns for a bit about her out-put, and her GI ordered a lab test to check out her pancreas, but we just got those results back and everything checked out just fine, so I guess for right now it's just a matter of fine-tuning her diet.  But she's honestly doing SO great!

Which makes it really hard to know that she has surgery next week.

Her ENT needs to open up her ear again.  We knew this surgery was coming; it's a follow-up procedure related to the Not A Tumor in her ear.  But I'm not gonna lie, it sucks.  Recovery after the last "open ear" procedure was pretty rough, and she'll probably be staying the night at Children's after this time as well.

We've done this lots of times, but I swear it's getting harder and harder instead of easier.  She's more aware of lots of things now, but still not in a place where I could even begin to explain this to her.  And unlike surgeries that have promised to remove a source of pain, this time we're taking a happy healthy Emma in and we're going to walk out with a miserable little girl.  In fact, she's happier now than she's been in a really long time, and it makes it harder to bring her in for a procedure that will be a rough recovery.

She's so strong, though, she'll bounce back.

I may throw a few temper tantrums between now and then :)

But we know our Great Physician is already there and will walk by our side as He always has