Chris commented tonight that I parent through research and intuition. Yep. I guess that’s right. But unfortunately sometimes I don’t listen to my intuition. So after a fairly uneventful fall from a Josh health issue point-of-perspective, we’ve had a few wild weeks since mid-November. I think that the universe was conspiring to allow me to get through my yoga training during a “quiet” time for Josh. It all began with an appointment with a new ENT. I have long questioned the wisdom of Josh getting PE tubes back when he was 5.5 months old. Even then, it just didn’t seem right. We were told there was fluid in his ears and that after tube placement, Josh would likely have normal hearing. Up until the day of the PE tube surgery, that little voice inside me was telling me it just wasn’t right. But I didn’t listen . . . maybe because our ENT was supposedly “the best in town” and she told us there was fluid. After the procedure, Josh had blood in his tubes for over two months and so they couldn’t test to see whether the procedure was effective. Josh finally had a sedated ABR and CT scan at 8.5 months. We learned then that Josh’s hearing not only didn’t improve, but seemed to worsen since his ABR at 3 months (only right side tested before he awoke).
When we saw our ENT after the CT scan, she only really told us that Josh had extremely small ear canals and a malformed left middle ear. She then told us that it was all okay “because Josh was so cute.” This was one of the most infuriating comments I’ve received thus far from the many medical professionals we deal with. She also told us that she wanted to see Josh every 2-3 months, but didn’t really explain why. Just that she wanted to watch his tubes and we “owed” it to Josh to come see her. Both Chris and I felt like she seemed on the defensive for some reason, but we assumed that it was perhaps because she knew we were both attorneys. At that appointment she also handed us a set of hard films from his CT scan and told us to hold on to the films because they were the only ones we were getting. We continued to see her for another 8-9 months (about 2 more visits) but she never did anything more than glance in Josh’s ears and tell us how cute he was. When we saw the cranial facial team last January, I decided we’d switch to the ENT from that team, since it appeared at that time that Josh’s hearing loss was a straight conductive loss, due to some sort of first arch syndrome. It seemed appropriate to have an ENT who was more well-versed in the facial cranial aspects of Josh’s condition. During this time, Josh was experiencing problems with excessive ear wax. This new ENT once removed Josh’s ear wax in the “straight jacket,” but in August, after my audiologist told me to have the ENT remove the wax before she could get impressions for new ear molds and my pediatrician told me that Josh’s right tube was just hanging in a ball of ear wax, this second ENT told me he wasn’t going to go near the tubes. He was just going to let the ear wax be there for now. He also told me the ear tubes had never done Josh any good anyway. Josh’s audiologist sure waggled her eyebrows when Josh returned to her with ear wax still overflowing from his ears. His audiologist actually tried to remove some of the ear wax herself before completing impressions for the new molds (although, I have to say, these new molds just aren’t the best–definitely not working out as well as his last molds did). At this point, I realized I needed an ENT that focused on the ears. I checked around at Josh’s school and discovered that everyone there used an ENT at the University of Minnesota. So I got an appointment as soon as possible, which turned out to be mid-November.
Our first surprise with our new ENT was to discover that our previous ENT (or someone in her office) had actually removed some of the CT images from the hard copy slides given to us. In fact, the images removed were apparently, per our new ENT, some of the critical images. From the CT scan images that we brought in, however, the new ENT saw enough potential problems that he was ready to send Josh in for a CT scan that very day. We declined the immediate CT scan (and now so glad we did) as we didn’t think Josh could handle it. The ENT had already put Josh under a microscope that day, allowing Chris to hold Josh (big improvement over the straight jacket method) while he removed Josh’s ear wax, and the right ear tube came with it, along with lots of blood in both ears. Thus, we picked up antibiotic drops to put in Josh’s ears for the next week and scheduled the CT scan out a few weeks. The new ENT suspects that the right tube had been out and hanging there for quite some time. The ear drum is still perforated so we don’t know, at this point, if that hole will ever close up without surgery. More hearing loss. Great, and I signed a consent form to allow my son to have these tubes placed? From this vantage point, it seems like an unnecessary procedure (also there is really no evidence that there was any fluid in the ears in the first place and Josh had never even had one ear infection). But okay, I will accept that we were acting on a medical opinion at the time; I didn’t go with my intuition. I didn’t choose to make waves, I didn’t even choose to get a second opinion. Sigh. I am but an imperfect mother.
We were supposed to have the second CT scan yesterday. But through research, I learned last week that CT scans have 500 times the radiation exposure of a regular Xray. And apparently three CT scans equal the radiation exposure of a Nagasaki or Hiroshima survivor. Even one CT scan in a child creates a 1 in 500 risk of developing cancer. Ooh! So, Chris went directly to the hospital that administered the original CT scan. He got the images on a CD, which I guess is how we should have received the scans from our original ENT in the first place. I began frantically calling nurses on the Wednesday before Thanksgiving, trying to get approval to cancel the CT scan until our ENT looked at the hopefully complete slides. Finally, at noon yesterday, just one and a half hours before our scheduled CT scan, a nurse phoned me and told me our ENT would look at our images at 1:00 pm and if he didn’t have what we needed, we could run across the street to the hospital for the 1:30 CT scan. Chris and I sat in the waiting room while our ENT reviewed the slides. I was hardly breathing. I just really felt like we were not supposed to have that second scan. I felt it with every fiber of my being. Was I going to be called upon to defy the doctor’s orders? To truly stand up this time against what I felt to be an unnecessary procedure (or at least one where the risks outweighed the benefits)? At about 1:15 p.m., our ENT’s nurse came out and told us she was canceling the CT scan. He had what he needed and the hospital had given us the complete set of the scan images. Whew. I breathed. Chris breathed. There was no small level of rejoicing between us in that waiting room over not having yet another CT scan; over not having to make the tough call of telling a doctor “no” or going against our intuition. Perhaps it was because of this joy that we didn’t really go into huge grieving when we heard what the ENT had to say.
At about 1:40 pm, we went back to see our new ENT and he told us that both of Josh’s middle ears are malformed. And he believes there is a sensorineural component to Josh’s hearing loss. Thus, he predicts that Josh’s loss will be progressive and he also told us that Josh may become completely deaf at some point in the future. He told us that the congenital deformations in Josh’s middle (inner?–Chris thinks he said inner, I thought he said middle) ear–(likely in the vestibular chambers–is the interpretation of our audiologist-trained speech therapist today) have created a situation where Josh doesn’t have any sense of balance from his ears. His balance all comes from his eyes or bottom of feet. He asked us how Josh is in a car seat in the dark. Yes, he hates it now–and he used to scream and cry like crazy (we thought he was crazy) when he was a baby. So, I guess in such a situation, he would just feel like he was spinning in circles. Okay, this explains so much. Wow. And also, at night, in a darkened room–the same thing. So, he always needs a night light. And we learned this about a year or more ago anyway through trial and error, but now we now the reason. And now, maybe we have an explanation for his insomnia. Which always, always happened in a hotel room or when we were visiting grandparents (some place without his nightlight). He’d wake up and just cry until someone turned on the light and sat up with him for about an hour or so. And his large motor skills? Yes, he can’t jump yet. And he falls down more than seems normal. And has difficulty running. And is a tentative climber. We knew all of this but now we have an explanation. Oh, this should all feel like bad news. But we finally have answers. We finally have someone who is taking the time and effort to look at Josh’s case. And so strangely, it feels incredibly hopeful. Because, essentially, Josh’s conditions haven’t changed. We just know more about them now. We even now know why Josh’s hearing has seemed to be declining over the past year. We are returning to our audiologist on Thursday for some unaided testing. And then, Josh is supposed to be tested every three months for the next few years and seen by the ENT on a similar schedule so that we can closely track his loss and keep him properly aided.
Finally, new ENT (we’ll just call him “Dr. I Love You” at this point) put Josh under the microscope again yesterday (again on Chris’s lap) and with something that looked like a scary-long needle on a stick, he finally found the missing left tube that no one has ever seen. It too came out in a ball of wax. I could see a magnified image of the scope on the screen. It was so bloody. It was hard to see. Everyone was amazed that Josh didn’t cry during this procedure. We left the appointment feeling like our new ENT is our hero. Both Chris and I rode the elevator down to the parking garage saying, “I love him.” I don’t know if this speaks as much to the basic competence of this new ENT or to the level of aversion we now feel towards our first ENT (with a little bit of aversion towards the second one, who never even looked at Josh’s CT scan). And the new ENT never once told us that Josh was cute, which is more than fine by me. That is not his role. Just the facts. That’s what we need, the cold, hard facts.
I wish we had known this all so much sooner. And I can wish that we’d received a second opinion before having the useless and unnecessary (maybe even harmful) PE tubes placed. Maybe a CT scan before the procedure would have shown an ENT that Josh’s ear canals were too small for PE tubes in the first place (first ENT apparently even used the smallest, metal tubes). But things go as they go. And I did learn from the tube experience. And Chris and I took actions that kept Josh from having a second CT scan. We may never know if our first ENT deliberately withheld some of those CT images or merely misplaced them. I have a hunch it was the former. But I am trained as an attorney, and I have already been mentally compiling the discovery in this case. I just don’t think we have a malpractice case here. But I am letting our speech therapist, audiologist, and newest member of the “Josh team”–our Occupational Therapist (who I guess is subtly pressured–“it’s very political” she says–to recommend our first ENT) know what has happened. [More soon on what we’ve learned from an OT standpoint recently, which has also provided valuable missing pieces to the “Josh Syndrome puzzle” that we’ve had open on our lives’ card table for the past few years].
I have learned, in all of this, something about trusting my mothering intuition or instinct. It is difficult when medical professionals make recommendations that go against your intuition. They seems to wield so much knowledge (and power). I guess one needs to remember that they too are just human and medical recommendations are constantly changing. All we can really do is make the best decision available at the time when faced with difficult medical choices for our kids. Still, if your intuition is speaking louder than the doctor, do everything you can to trust that voice. As I’ve learned, it speaks wisdom.