Unnecessary medical procedures?

Antibiotics, podiatric surgery, evt’s, oh my! (to the tune of Lions and tigers and bears, oh my!, From the Wizard of Oz)

A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.

We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?

I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.

Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.

The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.

The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.

At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?

We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).

We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).

Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.

I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.

Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.

The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.