I’ve noted a definite trend over the past year: my postings on this blog have migrated largely into the realm of poetry. It was not a conscious migration. I think that when I am in the midst of such uncertainty, as we’ve been with Josh’s right ear, I need to use the sort of vision-scope that only comes through the lyrical. I am touching down into tender places; touching lightly so as not to upset any of the delicate balance we might have found on a given day (or week or month).
But this blog has, in the past, gone into great detail about Josh, my third child’s hearing loss journey. If you’re here because of your own (or your child’s) hearing loss, you may want to check out past entries to get all caught up. Still, I haven’t posted in a long time, so I need to update the timeline.
Josh is now six and has started Kindergarten. He still wears a hearing aid in his left ear, which shows moderate conductive loss (so it has slipped through the years from mild-moderate loss–we are not sure why he’s losing ground because conductive loss typically remains stable). This year, Josh is using an FM system at school and loves it–he loves hearing his teacher so clearly in his left ear.
In May, 2012 (at age 2.5), Josh had a tympanoplasty and an ossicular chain reconstruction, with a PORP (titanium rod) replacing his first two middle ear bones. He needed the tympanoplasty to repair his eardrum, although we would have waited until he was older if he hadn’t needed major dental surgery. The decision to replace his first two middle ear bones was made in the middle of his surgery. You can read more about this surgery on this blog if you look under “tympanoplasty.”
The surgery restored Josh’s hearing to (at one point) 10 db across all frequencies. It was pretty miraculous. We’d often forget to use Josh’s left hearing aid because he was hearing so well in his right ear, we wouldn’t even notice when his left ear went unaided. Still, within 5-6 months of the surgery, that ear started to steadily discharge an amber greasy matter. We saw our former ENT many times in the following two years; occasionally the discharge was cultured and never churned up anything. Perhaps his ear just couldn’t rid itself of ear wax, we were told.
In December of 2013, Josh’s hearing in his right ear started to decline–slowly, but steadily. We’d chip away at 5 db every 3-6 months. It was worse, for sure, when he had a cold. His former ENT raised the possibility of cholesteatoma and ordered a CT exam. The CT exam showed excess fluid in the ear and so Josh was put on three-week course of strong oral antibiotics (at age 4, this was Josh’s first time taking antibiotics–now it’s become routine) and it was hoped that all was resolved. It was summer then, so Josh seemed to improve (although his hearing never went back to 10 db–we did get to about 20 db).
During the 2014-2015 school year, Josh had more trouble again with his molars (all molars had been capped in his surgery at 2.5). Two of the roots became infected and he lost 2 molars–with spacers inserted in their place. Are the teeth issues tied to the middle ear issues? No one can tell us. We’ve been told Josh’s issues are syndromic, but after repeated testing, Josh’s genetic doctor has not found an exact cause or a similar case to Josh’s.
In March of 2015, Josh had terrible ear pain in his right ear (9 on a scale of 10–and Josh is pretty experienced with rating pain). On the way to the ER, the eardrum ruptured, relieving his pain–and he was placed on more oral antibiotics, instead of drops (because it was the ER, after all). The next morning, Josh awoke in a panic; he had absolutely no hearing in his right ear. He also ran a fever for about a week, in spite of the antibiotics. His infection eventually healed, but his hearing stayed at about 25-30 db. Three weeks later, the same thing happened; fever and loss of hearing his ear. His ENT refused to engage in a conversation about what was going on and said Josh was unlikely to have cholesteatoma, because the CT scan a year earlier hadn’t shown it.
We went to the Mayo Clinic for a second opinion. Our new ENT suggested sedating Josh to go in and see what was going on. He told us that CT scans and MRI’s don’t always catch cholesteatoma (and it can hide out in the mastoids). On June 19, 2015, Josh was sedated at a hospital in Rochester, MN. The ENT came out from the OR to tell us that he was 1000% sure Josh had cholesteatoma–it was coming out of his ear and had wiped out some of the eardrum. He proceeded that afternoon with a five-hour surgery to remove the cholesteatoma in a wall up procedure (retaining Josh’s ear wall); tympanomastoidectomy.
Our ENT told us that he was confidant he got all of the cholesteatoma (although one can never be 100% sure because if a small speck is left, it comes back). Cholesteatoma is basically extra skin that gets in the ear and grows much like a tumor but is almost always benign. Where cholestetoma can wreak havoc is it can erode the ear bones, the facial nerve, and worst case, can grow near the brain and cause meningitis. Thus, it has to be dealt with if present.
After removal, cholesteatoma returns in 30% of the cases (I’ve seen the odds at 50% for children because they often have eustachian tube disfunction, which can create a pressure that pulls in the eardrum, creating a good environment for cholesteatoma). Our ENT also was able to retain Josh’s previous PORP because it wasn’t in the zone of the cholesteatoma.
By October of 2015, Josh’s hearing on the right had returned to 25 db across the frequencies. We tried a hearing aid, but Josh complained it was “echoey” and that the ear mold rubbed against the still-angry scar where they took cartilage for his new eardrum. So, we gave up on aiding the right side, for now.
Our ENT is monitoring Josh but did not propose a “second look” surgery at the six to eight month point, which is done when an ENT is not sure they got all the cholesteatoma and they want to go back in before any returning cysts get too large. While the cysts are yet small, an ENT has a better chance of eliminating all of the growth.
Our ENT told us if he did have to go back into Josh’s ear a second time, he’d likely do a “wall down” procedure, that would involve removing Josh’s ear wall and basically eliminate the outer ear, creating a large cavity that couldn’t ever get water in it and has to be cleaned out every six months. I’m not sure how Josh could have much hearing left after a “wall down” procedure. It’s so hard to think of Josh never being able to swim or play near water.
Well, Josh was almost at the five month point past surgery and we were feeling pretty good, especially since it seemed this tympanoplasty actually took and Josh’s new eardrum is holding up really well. Josh had a bad cold last week and then awoke on Thursday morning, as my poem references, with a fever and ear pain in his right ear. He was placed on antibiotics over the phone since his ENT at the Mayo Clinic cannot see him until this coming Thursday (the 19th). Josh’s hearing has been knocked out again too. This makes us quite worried about the return of cholesteatoma because colds causing ear infections were rare in Josh before cholesteatoma and they never knocked out his hearing.
We are still out here hoping and praying for the best possible result; and the ENT will unlikely be unable to “see” anything on Thursday, as cholesteatoma exists mostly within the middle ear. I’m sure Josh will be monitored more closely now, however. I’m not sure if this event is enough to have the ENT schedule a “second look” procedure. We aren’t eager for more surgery; we fear Josh having a lifetime of surgeries. We may even seek a third opinion if a wall-down procedure is proposed–because this is, after all, Josh’s entire lifetime ahead that will be impacted.
you hold your breath; you hope it doesn’t happen again
you scramble for ground to stand on; everything’s turned grey
there is no one to guide you; but prayers are offered
was it just Thursday night when everything was so normal?
it was still the before and we laughed together on the couch
we had concert tickets for Friday night; had we finally arrived
3:50 am, Friday morning, the “Daddy” cry comes and it’s not
just another nightmare
fever, sore ear–same ear that endured five hour surgery to remove
cholesteatoma* five months earlier; he can’t hear out of ear
wait for 8:00 am; phone call blitz to appropriate doctors,
nurse practitioners; two trips to pharmacy; get antibiotics
so we can wait again out here in the land of not normal
later, the world is awash in grief for France, and so am I.
awash in grief for us all; the uncontrollable of life
waiting for love to conquer all; waiting for hope to
transplant the dread; we fall to sleep that night with our
boy tucked between us
feeling for his fever all night long, I don’t sleep
as you predicted; I want to keep him safe always
I want to know surgeries and terror strikes are done
I want to laugh with you on the couch,
Heidi Fettig Parton
[A]nd the end of all of our exploring shall be to arrive where we started and know that place for the first time.
I could make this post about music, since it’s Music Monday. And if I were to make this post about music, I’d tell you how, right now in the pouring rain, I am listening to Fleetwood Mac’s album The Dance, which was once a new album of this iconic 70s band’s songs revisited. And now the “new” album, The Dance, has become an old album (and I too have become old). And as I sit here with the relentless rain outside my window, I am moved by my nostalgia over the time in my life where I had nostalgia over the song Dreams, as heard on The Dance, because it reminded me of trips, driving across the vast, flat entirety of North Dakota to reach my grandparent’s home in Crosby, ND with my family in our gray Rambler station wagon, me hiding under a doll’s blanket, afraid of the thunder. I veritably tremble when I see that Landslide is ahead on the album. The song, Landslide, carries personal nostalgic value in my life and it is a nostalgic song about nostalgia. How can that all be? I’ve been reading too much Dr. Suess because this all seems entirely possible.
Nevertheless, this post is not about music. It is about Josh’s ear health.
So last Monday, Chris, Josh and I left our house at 6:30 am for Josh’s 8:30 am-awake MRI. I had prepared Josh for the MRI by having him watch a few videos on Youtube. You can find these videos on my Sensory Processing Disorder Pinterest page. It seemed that Josh was willing and able to sit for the MRI. We had completed all of the forms and had gone around and around with the nurse about the fact that Josh was not to be given any contrast for this exam. After a few phone calls, she finally believed me. Finally, we were walking into NASA’s control center (okay, that’s what it felt like outside the huge 3.0 MRI seen through the window), Chris in his track suit and me in my yoga gear, because these were the only non-metallic clothing we could find. Once we got in with the MRI technician and he read through our forms, he told us that he didn’t think Josh could have the MRI because of his titanium PORP. I told him I had verified with our ENT’s office that the PORP was indeed MRI safe. He told us that while it was definitely safe for a 1.5 strength MRI, it wasn’t for a 3.0 strength MRI. He shooed us out of the room to call the head radiologist.
We returned to the waiting area. Twenty minutes later, he found us and told us that the MRI was safe as long as Josh was perfectly still, but if he tried to sit up even slightly, the PORP could move. He clearly didn’t want to risk it. I had had my own misgivings about this same issue the week before and hence, had done extensive research in this regard–even so far as to look at the information pages provided by the manufacturer’s of PORPs. In spite of our ENT’s reassurances, I still feared the slightest shift of the PORP towards the inner ear–it could do loads of damage. The lab technician clearly was against going ahead with the MRI and told us he could have us talk to the CT scan technician about our concerns over radiation. It was still an hour until our back-up CT was scheduled (at 9:30 am) and so we agreed. We were shuttled into the CT scan room and she put Josh up on the CT machine, giving him a sticker to add to the inside of it. He seemed totally comfortable and I realized the CT technician had been told to just go ahead with the CT. In a way, it felt like the MRI technician had made the decision for us and I might have been irked, but instead felt relief. The CT tech told us that she was very certain she could quickly get the kind of picture of the temporal lobes that our ENT needed. And so, we just went ahead with the CT and, 30 seconds later, it was all over and we were leaving the hospital.
I have to admit, as easy as it was, it was a bit of a “let down.” After all of those months of research and worry, we ended up allowing Josh the radiation hit by having the originally ordered CT scan. Hence, the admittedly overused T.S. Eliot quote above. The upside of the CT scan was that it wasn’t at all scary or emotionally damaging for Josh. In the end, maybe that’s what most mattered. At least, that’s what I am going to believe because, at this point, there is nothing I can do about the radiation hit of this second of Josh’s CT scans. It is done.
We met with Josh’s ENT the following day to go over the results. It was a long 24 hours to wait for the results, but at least Chris and I didn’t have to go over to the clinic dressed like PE instructors. After an even longer half-hour wait for our ENT in the examining room, he came in and asked why we didn’t get an MRI. I explained to him the radiologist’s concerns. He said that those concerns were ridiculous, but he still looked it up on Wikipedia of all things. Wikipedia! He told us the next time he’d send us to a different hospital for an MRI. Thankfully, however, he got what he needed from the CT and, at least for the foreseeable future, there is no need for an MRI.
Our ENT showed us that both of Josh’s middle ears were completely filled with fluid and so was his left sinus cavity. What should have been all black (showing air) was all gray on the scan. He is hopeful that the fluid is the cause of Josh’s present decline in hearing. He also did not see any evidence of cholesteatoma. I take some comfort knowing that CT scans tend to provide more false positives (and MRI’s more false negatives) for cholesteatoma. At present, Josh is on a 20-day course of oral antibiotics to see if this will clear the fluid. We have another hearing test set for early June. I am hoping that the antibiotics clear the fluid. Josh has never been on oral antibiotics before, although he did have one full-spectrum antibiotic given intravenously in the ER when he was 2.5. I am not a huge fan of antibiotics for many reasons (hopefully a subject of a future post) but I do recognize that antibiotics still sometimes are necessary. If the antibiotics don’t work to clear the fluid, we’d be looking at PE tubes once again. I am very dubious of PE tubes, given that Josh’s ear canals are so small that our previous ENT never actually successfully placed the PE tube in his left ear and the right grommet, although successfully placed, ended up ruining Josh’s original ear drum. I would have a hard time accepting the potential destruction of Josh’s rebuilt right eardrum with another metal grommet. But we are not there yet. For now, “just antibiotics” beats surgery any day.
I am grateful. I am hopeful.
“Embrace the maximally postponed decision” is a philosophy I’ve embraced ever since I read about it in a book about trying to buy/build a 1000 square foot house for under 100,000 dollars. As an aside, since my twenties, I’ve been intrigued by the concept of living in a very small, but well-built house. I still plan on embracing the small-house movement, but it continues to remain not appropriate for the number of people that I have floating in and out of my life. Fortunately, Chris shares my fascination and maybe someday, we’ll live in an airstream.
Anyway, back to the decision. Ever since Josh’s right ear (situs of Tympanoplasty and Ossiculopasty in May, 2012) started to drain late last year, and our ENT told us it was time to either have a CT scan or an MRI, I have engaged in extensive research, as well as entertained an internal dialogue, debating the pros and cons of each. Josh was originally scheduled for a CT scan in January, but I talked to our ENT and asked if we couldn’t just “watch” for a few months to see what happens. He agreed. We were going to make a decision in March, but our ENT appointment was rescheduled twice and we didn’t end up seeing our ENT again until April 3rd. In the meantime, our ENT seemed to have changed his own view on the matter, now favoring a newer type of MRI to look for cholesteatoma in Josh’s right ear over a CT scan. At the same time, our new pediatrician called the radiology department for me and concluded that a CT scan (it would be Josh’s 2nd CT), even with the high radiation, would be better for Josh than trying an awake (without sedation) MRI for Josh. In all truth, I think I was hoping that somehow neither would be necessary, if we postponed the decision long enough.
To monitor Josh’s ear, we’ve been seeing our audiologist every six weeks throughout this time and, unfortunately, from February 9 to April 17, she’s noted a 15 decibel loss across the frequencies for Josh (so he is now at 30 decibels–but likely still falling) This is a very significant loss and it’s definitely hurt him at school. In particular, he cannot understand the kids on the playground and he always feels left out (his words for this are “no one tells me what they are playing anymore”–very typical situation for Hard of Hearing kiddos). Josh has had more than his fair share of tears over the past month that I believe have their origin in the social isolation he is feeling (also, I think he is grieving this loss, without really understanding what is happening). In the meantime, the hearing loss in Josh’s left ear has been getting progressively worse and we thought it was supposed to remain stable because it is conductive loss. Needless to say, we would be aiding Josh in the right ear again if it were possible but there is too much drainage for an aid right now. On April 3rd, our ENT and I agreed to first try Josh with an awake MRI to see if he could handle it. Most people I’ve talked to since have told me they don’t believe a four year old could handle an awake MRI. The thing with Josh is that he is super amazing about some medical procedures but has a terrible time with others. For instance, he’ll sit perfectly still to get his ears cleaned out under a microscope, even with a vacuum suction, but he freaked out completely when given his sweat test for cystic fibrosis earlier this year (and we were told by the lab tech that it would be painless).
With our MRI scheduled for April 28th, I continued to debate whether I shouldn’t just change over to a CT scan to avoid all of the anxiety the MRI might entail. I’ve been working through Mark Nepo’s The Book of Awakening this year. I happened across a daily entry this past week that had to do with making a major decision. Nepo says that if you are having trouble making a decision, look what is under that decision. Yep. I did this and realized that I am trying to make the perfect decision in this case because I feel like I so failed Josh in a medical decision two years back (see this blog entry for further details). Because of this decision, I think I’ve decided that going forward, I owe Josh the most well-researched, well-reasoned decision. Always.
As the debate waged on in my head, something happened. On Wednesday, Josh told Chris he heard a “whooshing” sound (he described it sort of like a whirring fan or static on a radio) in his right (surgery) ear. It was really bothering him to the point that he was hitting his ear. While the ENT’s office was about to close for the day, I miraculously got a hold of our ENT’s head nurse (I think I’ve learned to work the system a little bit). She told me nothing could be done but to have our audiologist look in the ear the following day (J. had an appointment already scheduled) and call to tell them what our audiologist saw. She also suggested trying to move up the MRI. Thankfully, the whooshing noise stopped before Josh went to bed that night.
The next morning, I got on the phone with radiology and they moved up Josh’s MRI for Monday, April 21st at 8 am. Since time is of the essence here, it was decided to also schedule a CT scan for 9:30 am, in case the MRI without sedation doesn’t work for Josh (it would take a week or two longer to get a sedated MRI scheduled). So, there you have it. Done. The decision will really be made for us by how Josh does on Monday morning.
When our audiologist looked in Josh’s ear with her otoscope she was pretty sure she was seeing his entire middle ear; meaning perhaps a total failure of the tympanoplasty (reconstructed ear drum–where did you go?). She let me have a look and yes, I am seeing a completely different ear than I was a few months back too. I am not sure if the tympanoplasty “blew” last week when Josh heard the whooshing noise. I called our ENT’s office from our audiologist’s office and they put Josh on our ENT’s appointment for Tuesday the 22nd at 9 am. So we should be learning more soon. At this point, I recognize our desperate need for information as to what is going on in Josh’s ear and so I welcome whichever test works for Josh on Monday. It is a bit of a relief to know that one of these tests has to be done and the decision has all but essentially been removed from my plate. And all that wasted time spent worrying . . . although I do not regret the time spent researching this issue. Still, it is good to know that sometimes, the answers just come and no amount of forcing will get us there sooner than we are supposed to arrive.
Sometimes the decision maximally postponed gets made for you. In a way, it is a weight off of my chest. Crazy as that sounds.
I’ve been attending Al-Anon now for nearly six months. Al-Anon is a twelve step program that utilizes the same twelve steps as Alcoholics Anonymous. Al-Anon acknowledges that alcoholism is a family disease. It does not differentiate between the alcoholics and their family members–we are all addicts in one way or another; we are all powerless over alcohol. It has been thirteen years since I’ve lived with an alcoholic and still, I remain powerless. It’s only recently, however, I’ve begun to understand how this disease continues to impact my life. It is ingrained into my every thought pattern; my approach to every problem; it underlies my every action. I, like so many others impacted by alcohol, try desperately to control. The need to control or the notion that we have the power to control is our addiction and slowly, but surely, it erodes not only our own inner selves, but the lives of those around us. And so we attend meetings and “work the steps.” Thus far, I’ve been hanging out on the first three steps, which are as follows:
- We admitted we were powerless over alcohol–that our lives had become unmanageable.
- Came to believe that a Power greater than ourselves could restore us to sanity.
- Made a decision to turn our will and our lives over to the care of God as we understood Him
And, in my true yogi fashion, I am telling myself that it is okay that I am stalled out here on the front steps. It’s exactly where I am supposed to be and when it is time to move along, I’ll know that too.
So what got me through the door of Al-Anon (aside from a good dose of God’s grace and prodding) was the fact that I was living in a state of complete and total lack of forgiveness towards myself for a decision that can be read about elsewhere in this blog. And it became clear to me that this lack of forgiveness; this intense regret, if you will, was causing vast destruction to both myself and those around me. Why not just get a therapist you ask? I’ve had therapists. Sure, therapy feels good, but underneath it all, I am still little old me, with my destructive thought patterns and intense need to control every situation and the debilitating anxiety that comes when you think you probably should be able to control everything. I am the woman walking around trying to hold up the world saying, “Yes, I know–you tell me there is a God out there somewhere who is in control and it’s true, I believe in that God–but still, I can’t let go of this world–everything might fall apart on me and then what?” I am still, underneath all my past therapy, a child of an alcoholic. A small child thinking that she has to hold everything together; that is “her” job and if she doesn’t do it, her family is going to fall apart. I am that middle-aged school child, trying to be super perfect and successful–because then and only then, things might be okay. I am that high school student who will not tolerate a grade below an “A” because somehow, her “A’s” are keeping her family from crumbling under this sad disease that everyone in the family is powerless over.
When that child has a child (at age 22), likely because she thinks that this child might save her first alcoholic and her newly acquired alcoholic, she begins the slow road towards exhaustion, trying to control everything in that child’s world so that this child will never know sickness or pain and sorrow. But in trying to control this child’s (and the two to follow) every move, as well-meaning as she is, she begins to pass down the family disease. Still, she manages to raise the first two kids, at times without the help of the second alcoholic in her life. And then, miraculously, at age 39, she is given another go at it. She has a baby boy and she is certain that she will be a much more laid back parent this time around. But then, the day after that child is born, she learns that he has a disability; hearing loss. Something about this disability–the fact that she has no control, sets her on a path towards trying to control more than she’s ever tried in her life. The world she is trying to hold up becomes heavier and heavier until she begins to sag and sink under its weight. In time, however, she begins to see that things are still “okay.” The sun still rises and falls; her son feels not only sadness but joy. He is just a regular kid, with a disability–but he’s never known it any other way and so he accepts. Because of his acceptance, the woman child too moves to a place of (more or less) acceptance.
By the time the little boy had his hearing aids for a year, he was even making great progress with spoken language and she relaxed her grip a little. Then the little boy’s molars started to crumble and he required dental surgery, placing crowns on all of his molars. The little boy’s ENT suggested repairing her boy’s perforated right ear drum at the same time. She agrees but this is the first decision she now agonizes over. She didn’t know anything about Tympanoplasty at the time and thought it was a fairly simple procedure that you did once and it was fixed for all time. During the Tympanoplasty, the ENT came out and announced that he could see the cause of her boy’s hearing loss. He was born with malformed, small middle ear bones. The ENT said he could likely fix this (80% chance) by removing the first two bones and inserting a prosthetic device, called a PORP. He rattled off some risks but she didn’t really process the risks. She didn’t really know what to do. She hadn’t researched this at all, but it seemed like it was another example of saving her little boy a surgery somewhere down the road. Her little boy had the bones removed and the PORP placed. And it was good, for a while. The little boy regained hearing; the surgery deemed a success. At the same time, the woman learned more about the surgery after the fact, learned how often Tympanoplasty’s fail and PORPs are rejected by the body. She began to hold on tighter than ever–if nothing else, then to this gift she was given, this gift she perhaps improperly took. Was she greedy? This is where her health begins to fail and she wonders what will happen if she is not around to be the “controller” of everything in her small son’s life.
Back to first person point of view. I think I just needed to distance myself from that girl who became a woman, with bigger decisions, entering places where perhaps the illusion of control seemed more real than illusory.
Today, J’s hearing is declining in the surgery ear, which means something is not quite right in there. J’s last two audiological tests have shown notable drops in his hearing levels–enough that we know something is happening. He is now borderline in that ear. We see ENT next week and the dreaded CT scan will likely follow. Maybe another surgery. It is a possibility at this point (and we control freaks like to run through every possible worse case scenario in our heads–so we are prepared? cause we are negative people? because we never learned to trust the people in our life?). So, I have been working once again with regret over this decision. I’ve been waking in the morning with “why did you make that decision?” running through my head. I then get up and read my Courage to Change (Al-anon literature) and read the first three steps. I pray for J’s ear (along with my other prayers) and sometimes, I try to envision some best-case scenarios. I even try to be grateful for the time (almost 2 years) that J has had of hearing normally out of his right ear. In all truth, I’ll never really know the true benefit of those years as compared to a scenario in which we 1) waited until this year for the Tympanoplasty (our previous plan); or 2) Just did the Tympanoplasty without the ossicular replacement.
When I was reading the 12 steps yesterday morning, I stopped on step 3–reading and re-reading it until I cried. Why does it hurt so much to be asked to relinquish control, even to God. When I awoke this morning, I had the same old theme of “Why?” running through my head–the new variation on the theme this morning was to flog myself about the small window I had to research Tympanoplasty and potential surgical interventions in the middle ear after our ENT mentioned the possibility at our appointment less than a week before the surgery. Surely then we would have been set up to make the “right” decision. But then a voice inside my head began to say to me, “Are you God? Are you bigger than God? Do you think that God is smaller than this decision? Do you think he could not have acted or intervened in some way to prevent the Tympanoplasty or Ossicular replacement (PORP insertion)? Was it really all on you? All on your shoulders? Put down this big heavy world you have convinced yourself you are carrying. At long last, put it down now child. I am God. You are not God. I am. I am. I have my hands under this one. Let go. Turn it over to me. My will be done–not yours. You will be able to bear my Will. My will is always bearable. I work in All circumstances. All.”
Recently, I attended a writer’s workshop for the writing mom. I had no idea that since I began this blog back in 2009, so so many moms have begun blogging. And so many do it so well. Who am I? I ask myself this question from time to time. And then I fail to write a blog post. Instead, I tend to spend my time researching my children’s medical issues so that I can be one of those much maligned, as of late, “educated moms” who medical doctors have to contend with these days. I remember once hearing my daughter’s Irish Dance teacher say that her job would be fantastic if it weren’t for the parents. I suspect many pediatric doctors these days are feeling the same way. Internet research can be dangerous but it can also be extremely useful. And then, being able to tap into the collective wisdom of fellow blogging moms (and getting their support)–well, that is just a wonderful blessing of the internet.
So I am not sure why I had never run across this article before, but last week I found the quintessential article on tympanoplasty surgery and yes, cholesteatoma. It is written by an ENT, but written for a lay audience. And he really gets how to write for a lay audience as well. After reading the article, I cried and cried. Because I finally understood–fully understood–the decision we made for J when we opted for his tympanoplasty. I also understood the extreme and rare miracle of his hearing being restored through the surgery. And, well, I understood the implications of cholesteatoma oh so much better. Every day this blog is visited by people looking for more information on Tympanoplasty and for those of you here for that reason, here is the link to that magnificent article by James Fairley. “Dr. Fairley, I will likely never meet you but I am forever grateful for your contribution to my knowledge base in an area where I need the most knowledge possible to make the best decisions for my son going forward.”
And so we met with our ENT this past Monday. He walked into the office and looked at the piece of notebook paper in my hand. The paper, front and back, was filled with questions. Some of them “if” “than” type of questions and so I had to proceed in order. It was a busy day in the office, in spite of the 50 below wind chill temperature outside, and he was already behind by 45 minutes. Yet, still he sat down and got comfortable when he saw my list of questions.
I told him, “I have some questions for you.”
He replied, “I can see that.”
Well, I have to hand it to him. He listened to and answered all of my questions and every last one of my clarifications. We left his office with the understanding that he would follow J’s ear for the next few months and we would delay a CT or MRI until either we cannot put it off any longer or the drainage pattern gives our ENT a better sense that we are looking at cholesteatoma. He agreed to using an MRI but said that there is risk in sedation of kids at this age too. He said, “But you guys are the parents. I just present the options and you get to decide.” So over the next few months, I will conduct research to help us weigh CT vs. an MRI; another brutal dose of radiation or yet another sedation.
After making my way through our list of questions, I did apologize a little for the inquisition. Our ENT responded, “You are his parents. You have a right to be concerned and ask questions.” And then he added, “Of course, you two might be a little more concerned than most but that’s okay.” I said, “Hey, I know–it’s not healthy but I am working on it.” I didn’t tell him that this tympanoplasty surgery has driven me to attend Al-anon when I haven’t lived with an alcoholic now for 13 years.
Chris said he had kind of fallen back in love with our ENT after seeing how he handled my questions. And I guess I did too. It felt like a small triumph. We were able to cancel the CT and wait a bit. We will have an actual choice between a CT and an MRI. And, at this time, there is no concrete reason to believe J has cholesteatoma. Well, I’ll take it.
But as it so often goes with J, one triumph (small as it was), is followed by upset. J had some not good blood results come back from his pediatrician’s office and I got the call about those the day after J was at the ENTs office. And so, on another 45 below windchill day, I was rushing J off to the nearest Children’s Hospital for more blood tests. His blood draw from the week earlier had been nothing short of disastrous and so I had his OT calling to talk to the lab director to prep them for J as we were walking in from the parking garage. They did everything right for his SPD issues, but the best tech they had couldn’t get blood from J. She said his veins were jumping around. J was traumatized and screaming but we let another tech try because the other option was to try to walk him back into the hospital the next day and try again (ugh, I don’t think so). She got the blood. And now we are waiting.
As I drove home with J yesterday from the blood draw, he stared blankly out the window, even though I was playing his favorite CD. He seemed completely defeated by the experience. Hurt, actually. Yes, in the physical way but in a deep emotional way too. I know that there are children out there, particularly those with cancer (I am continually encouraged and amazed by the mom blog ourlittlehazlenut.blogspot.com) who have endured far far more medical procedures than J. Still, I started crying silently on the drive home as I thought about the large number of stickers (I am certain more than 500 now) J has received after medical procedures. Just that day, the lab tech had given J four stickers and a can of bubbles because she felt so bad. She told us she was very experienced and had never had a blood draw go so poorly. She told J she’d have given him an iPad of his own, if she had had one to give. She said, “He is just so sweet and he tried so hard.” Yes, so sweet. So sweet. I will continue to question and seek the best answers and do all I can for my sweet little boy. And when I get a free moment, I’ll try to blog about any learnings that might be shared and prove valuable to other moms.