Not Perfect but Functional

There is just something so tidy, so comforting about receiving an “A” grade on a test or report card. Good grades provide a physical confirmation that “yes, I did all that I could–I gave my very best.” So how does a former straight-A student learn to live with the C’s and B’s that life inevitably doles out? Well, this imperfect mother is still learning, at age 42, how to deal with less than perfection in her own life and the lives of those around her. A perfectionist lives from one event to the next; always delaying happiness for that later time when everything will finally be perfect. Good grades feed a perfectionist because they might, for a very short moment, say that all was done as it should have been done. But no sooner received, the perfectionist is already looking ahead to the next challenge on the horizon. Gratification is always delayed; is never realized. True contentment is rarely recognized.

If you haven’t previously read about my son Josh’s recent surgery, here is a recap. On May 3rd, Josh underwent a tympanoplasty to repair his perforated right eardrum. This surgery was elective in so far as it might have been delayed a few years until a point in time when his eustachian tubes were more stable. Still, Josh already was having dental surgery and so, upon the recommendation of his ENT, we decided to go ahead with a tympanoplasty in an attempt to save Josh from a further sedation. While performing the ear drum repair, Josh’s ENT observed that the first two bones of Josh’s middle ear were malformed. More specifically, these two bones were too small to effectively conduct much, if any, sound. Well, we finally knew the SOURCE but not really the CAUSE of Josh’s congenital hearing loss. We were also given the option of proceeding with a potential repair, known as an ossicular chain reconstruction, where Josh’s first two bones would be removed and replaced with a titanium prosthetic device in the hopes that the prosthesis would conduct sound more effectively than the malformed ear bones.

While our son was in surgery, we decided to proceed with the ossicular chain reconstruction. The recovery from the tympanoplasty has been grueling. I would never advise another parent of a child under the age of five to undergo such a surgery unless medically necessary. The literature on tympanoplasty from an ENT office makes it seem like the recovery is a simple matter of a few days on pain meds and a week or so of laying low. The problem is, a cold or ear infection (quite common in this age group) can undo the entire procedure. We didn’t know this before surgery. We pulled Josh out of school, occupational therapy, and kept him mostly away from public places throughout the months of May and June. Remarkably, neither Josh nor the rest of his four family members had even a mention of a cold during these two months. We had a bit of a scare at the end of June and brought Josh into the ENT. He noted that Josh’s ear drum was in tact and healing nicely. We sighed with some relief. We had  made 8 weeks (the first critical landmark) without incidence.

We let Josh go back to open public places, such as parks. About 3 days after the 8-week marker, Josh began to run a 104 temp (of course on the weekend). We brought Josh to the ER. They did not know the source of Josh’s fever but looked at his eardrum and saw that it was still in tact. Another sigh of relief. Throughout the next week, Josh’s temperature occasionally shot up and his ear began to drain. We went to the pediatrician at the 9 week point post surgery. Our pediatrician noted a small perforation in the ear drum repair. Our “A” ear report card had been downgraded to an A- or B+.  The following week, at 9.5 weeks or so, Josh saw his ENT who noted the perforation. He said it was small and located in a “good” place if Josh was going to re-perforate. He actually said to me, “it’s not perfect, but still functional.” Okay, so I guess we were downgraded to a B here and I felt the downgrade in my heart, but tried to practice gratitude even in the face of “less than perfect, but still functional.”

At the same time, Chris and I had been observing a language explosion with Josh since about mid-June. He would hear the ice machine shift in the kitchen when he was around the corner and in the living room. It was the smallest of sounds and Josh would ask “What’s that noise?” He was overhearing conversations and building language from this secondary source, which is something that often escapes kids who are hard of hearing. An example of this incidental language acquisition in action: one week, Hannah and I were discussing the health benefits of quinoa. The next week, Josh brought a bag of quinoa into Hannah and told her “Hey Hannah, quinoa is healthy for you to eat.” We were hearing Josh routinely put together 12-word sentences. A beautiful thing. Most of the time, Josh didn’t even ask for his left hearing aid and because he was doing so well unaided, we left it out. Still, throughout July, Josh’s ear began to drain on and off.

The week that was supposedly “the finish line”–that is, the 12-week post surgery marker–Josh’s right ear began to drain more fervently than before. Because we had our post-op with the ENT, as well as an audiology appointment scheduled for the next week, I decided on Friday afternoon to just run into our pediatrician to make sure the ear wasn’t infected. I wanted to avoid another weekend ER trip. Josh’s pediatrician looked in Josh’s ear with her otoscope for what seemed to be hours. She finally emerged from the ear and told me that the perforation seemed much worse. She also reluctantly told me that she saw whitish matter from the center of the ear and worried that Josh might have cholesteatoma. Cholesteatoma is no small matter and would have surely required more surgery. Chris and I proceeded to spend the most agonizing weekend we’ve ever had together. He developed a low back issue from the stress and I acquired about 20% more white hair (seriously–no exaggeration here). Meanwhile, Josh began saying “what? what?” to everything we said outside and in the car. He also was completely frustrated by this obvious drop in hearing and tantrums escalated. The left hearing aid went back in.

I was able to move Josh’s ENT appointment up to Tuesday first thing in the morning. I still brought Josh to his appointment with his audiologist on Monday. After testing, the audiologist noted no changes in Josh’s left ear (this was the no surgery ear, so “stable” was good) and noted great gains in the lower frequencies on Josh’s right ear. Because Josh was born with a “reverse slope” hearing loss (meaning the high frequencies were heard better than the lower frequencies, which is the exact opposite of most hearing losses–but typical of a pure conductive-type loss) he was almost into the unaided zone across the board–his audiogram, which I’ll try to post soon–was nearly straight across the board just below the 20 decibels. Here is a link to a “speech banana” showing where typical speech sounds are on an audiogram–so you can see that 20 decibels is still giving Josh great access to speech. His audiologist said that the low frequencies are where one hears inflection in the voice. Notably, Josh’s inflection had improved greatly this summer as well. He sounded much less “robotic” which was a noted problem with Josh’s speech earlier this spring. As great as these results were, I felt we had lost some of the gains with the perforation. I really believe that pre-perforation, Josh’s hearing had likely been in the normal (probably 10-15 decibels across the frequencies).

Well, sigh of relief. Huge relief. Vibrant, glorious relief. Our ENT did not see a cholesteatoma, and felt that our pediatrician was seeing the cartilage used to repair the ear drum. He did note the enlarged perforation and expressed concerns over Josh’s continued drainage. He believes that the perforation and draining both are acting to decrease Josh’s access to sound. He wanted us to be sure to get in for an ear culture the next time the draining began (before treating with antibiotic ear drops as we had been doing). And well, that would be today, 14 weeks post-surgery. The drainage has kicked up again and we are going in for a culture this afternoon. The ENT said that, depending on the cause/source/continuation of the drainage, he may have to remove the prosthetic device. And so, here we are–in this gray zone. In this zone of less than perfect. Definitely not “worse case scenario” (which would have been cholesteatoma) but not the perfect result we had hoped for. Indeed, I can’t even see that we opened a door and walked through. Perhaps we just opened a window for Josh for a time to greater access to language. The road ahead is uncertain. But I guess so could be said for any child, any person. I read last week of a child who contracted a deadly brain infection from an amoeba that swam up his nose to his brain after swimming in a Minnesota lake. He was gone within days of contracting the amoeba. Oh, my heart goes out to his parents.

This life is uncertain, fragile. It seems that the effort is to embrace each day, each opportunity fully–regardless of any overhanging gray clouds or imperfections. This imperfect moment may be our last. When Thoreau wrote of sucking the marrow out of life, I doubt he meant that we must wait until all conditions are completely favorable, blue skies ahead–complete assurance of a straight-A kind of day. I think he meant that, to suck out the marrow, you must dive right into the grayness, the muddle of life. In spite of the imperfections, the uncertainties, the vast amount of suffering that befalls each human life, we must endeavor to keep our hearts fully open, breathe in deeply, and walk ahead–palms open to receive it all. Head bowed in thanks for it all.

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6 comments
  1. Sarah said:

    I’m so very glad that you did not have the worst case scenario. When Jadon had his bone graft, there was a large white mass at the site. At first they thought that it was bone and he would need another surgery. Later, they realized that it was his permanent tooth coming in! Quite amazing really.

    Just found out that Grace will probably need a bone graft next summer…yikes! It was one thing with Jadon who is pretty tough and a real trooper for surgeries, but quite another thing for Grace, who is still petrified of needles after her hospital stay this summer.

    Sweet Josh…I’m praying that he experiences even more gains in speech.

  2. Julie Coleman said:

    Heidi, what a roller coaster ride! I’m glad to hear that Josh is doing pretty well (a B is so much better than a D!) and improving so much in his speech. He is fortunate to have such amazing parents! Sending lots of love to you all.

  3. Tasha said:

    Heidi – we are still waiting for our surgery. I just happened to come by here tonight. The board has been busy these last few weeks, and I think you would have a lot to talk w/the rest of us about, c’toma or not. This IS it, this gray, but the thing is I’m realizing most of the kids are a lot tougher dealing with this than we assume.

    Hoping for all the best with your son, will continue trying to follow.

  4. Crystal said:

    Thank you. Just found your blog while looking up information on tympanoplasy. Sitting here a day after surgery with a sleepy 3 year old. Sounds like complications happen in life no matter how well prepared and informed we are. Hoping for a smooth recovery.

    • Hydie said:

      Sending out healing vibes to your little one. Make sure you put any instruments or toys that you blow into! Much love as you enter the healing journey.

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