Thursday, November 7, 2019

Taste and Hear

We are two days post-op from Caleb's right ear tympanoplasty. If that sounds complicated, is. I marvel at the hands that can operate on some of the smallest bones in the body with delicate precision through a hole that is the size of my pinky fingernail. Caleb had a cartilege-enforced graft created to replace his eardrum that had been perforated as well as a prosthetic earbone placed behind that graft to enable to him to hopefully correctly register sounds. And while the surgeon was working his magic, he also placed an ear tube to allow the pressure from Caleb's eustachian tubes to not pull on the ear drum quite so much.

Though everything looked great to the surgeon when he filled Caleb's auditory canal with surgical packing, put a cotton ball over it, and sent us home; we are now in a waiting game. In a little over two weeks, we return to Indy for the same surgeon to remove the packing material to see if the most important test is passed.  The look.

It happened last time when Caleb had the packing removed from his left ear.  The surgeon was steadily working to remove the material when all of a sudden my 11-year-old burst out with a "WHOA!" Sound finally was able to reach a fully functioning, freshly grafted ear drum. It was magical! His eyebrows lifted, his eyes lit up, and he kept telling us how loud the world was! In my mind, that look is more telling than the audiology report.

In addition to praying for his hearing to be restored, Caleb has had a new twist in recovery this surgery.  Did you know that there are nerves in your ear that control your ability to taste? Pretty wild, huh? I wondered if something was off when Caleb didn't devour all the chicken fries when he came home from surgery... when he said they tasted... different.

Then the next day Caleb said nothing tasted quite right. Most flavors seemed very much the same unless they were a dark chocolate bar. Now, you might be thinking, "Of course, the only thing he says he tastes well is dark chocolate. I'd say that too if you'd bring me a bar for breakfast, lunch, and dinner." That thought crossed my mind, but the louder voice in my head was that of a friend whose son had a similar surgery and struggled for a few weeks with an altered sense of taste.

Calls to both that friend today as well as the surgeon's office confirmed that we are now playing yet another waiting game...waiting for Caleb to regain his sense of taste. So far today, we've had a major victory in discovering that Caleb can taste eggs if I season them strongly. Bacon is also on the list of strong flavors that he registers. Ron Swanson would be proud. Odds are good that within a few weeks, he'll be back to enjoying his favorites; but until then we're pushing strong spices and flavors and giving thanks that nerves regenerate. Because...let's just be honest, if I had to pick between being able to hear in both ears and being able to taste, I'd be the partly deaf woman in the corner with ice cream slathered all over her face.

So tonight we had breakfast for supper, and this morning I dropped by Culver's to pick up some pints of dark chocolate frozen custard. If you have to wait to both taste and hear, why not live it up?

Also, I just wanted to say thank you. Thank you for the texts, emails, posted comments, and prayers. We're grateful to know there are people praying when the journey takes a turn we didn't anticipate. So many of those messages came through at the exact right moment that we needed an encouraging word. Sometimes technology really IS useful. Blessings to you all.

Tuesday, November 5, 2019

The Problem with Success

Have you ever had something go really really well? Like you nailed that proposal. People are going to write home about how amazing it was to sit in that meeting with you. Or you really parented that kid in public like a boss.  I mean... the moms in the next aisle over were taking notes and were amazed by how you got that toddler off the floor without messing up your hair, dropping your coffee, or raising your voice. Glory.

In Caleb's case today, he's wishing that his surgeon had been a little less successful about 6 months ago. At the end of May, Caleb had surgery on his left ear to repair a damaged ear drum.  It was a complicated procedure, but his recovery was phenomenally easy.  After two weeks, the surgeon removed the packing material, and what we've been waiting for for almost a year happened. Caleb heard. He could hear so well from his left, newly-repaired ear that if I whispered in his right, he would turn his head for me to repeat myself in his left.  It had achieved the sought-after status of the "preferred ear."

His personality altered drastically as he was able to hear what everyone around him was talking about. Amazing how easy it is to contribute to conversations when you actually can HEAR what others are saying. He played with his siblings more. He smiled more. He even became less self-absorbed since he could actually HEAR what people around him were feeling and needing.

An audiology test in October confirmed what we had been celebrating all summer.  Caleb's hearing in his left ear far exceeded his hearing in the right. Several options were presented to us (waiting, hearing aids, surgery), but David and I kept circling back to our desire for Caleb hear fully from both ears.  To be able to distinguish directionality of sound. To fully engage with the world.

Which brings us to today.  I'm sitting in the family surgical waiting room of Riley Hospital for Children.  We haven't met a person here that isn't top notch.  Their communications staff, their child life specialists, their nurses, and their doctors have done an incredible job of making sure we have all the information that we need to know Caleb will be well taken care of.  Caleb was completely calm and relaxed when he went back to surgery with the nurses, but let's just be honest... he'd rather not be here at all.

He'd rather be playing football or reading a book or even copying his spelling words than be here... because he's 11.  And the only thing he is thinking about right now is right now. At one point when we were talking about this surgery as an option, he said he would rather opt out. He made the fairly logical argument that it was his body and he should be able to choose if he wanted the surgery.  I then asked if we were to buy him ice cream if he would consider the surgery. He eager "yes" was a good teaching opportunity.  If you're still young enough that ice cream sways your major life decisions, you're too young to make major life decisions. So here we are.

We are 2 hours into a 3 hour procedure. A surgery updating nurse rotates around the room once an hour.  She's visited every operating room and gives updates on how each procedure is progressing.  It's truly beautiful to watch her extend grace and care to each family. 

Pray with us, please? That this procedure would result in Caleb having a functioning ear drum and that the ear drum will do its job rather than retracting into the middle ear. That Caleb would stay encouraged and find purpose in his 2-week recovery period of "no activity that works up a sweat." 

Update: The surgeon just came out and told us that the procedure appeared to be a complete success. He said that there was deterioration behind the ear drum that was causing a good portion of the hearing loss which they were able to repair with another prosthetic ear bone and a cartilege-reinforced ear drum graft, along with an ear tube to help the graft to not retract into the middle ear. So thankful. Thankful for this surgeon, this hospital, for Caleb, and for the guidance from the Lord to choose this road. Because what was successful once has the potential to be successful a second time. And, yes, we will be celebrating with some hard-earned ice cream.