Hearing Loss Update

Joshua (and parents) have had quite the week. Yesterday, Josh had his sedated CT scan and ABR (Auditory Brain Response–a hearing exam that lets us know at what level Josh is hearing). He also had a large volume of blood removed from a vein in his leg while he was sedated. This blood will be sent on to hematology for analysis. I will talk to the hematologist next Tuesday to get those results. Finally, they were able to remove the sutures from his finger while he was sedated (which was nice, because I am not sure how they would have gotten him to hold still for the removal otherwise). The finger has healed nicely.

The hardest part of the procedure was watching them try to get the IV in for the sedation. It took 1/2 hour and about 8 attempts. His little hand is all bruised today from the various attempts to get a good vein. Apparently he was more difficult than most because, as they said, he’s so “well-nourished.” After looking at his chubby feet and hands for some veins, they anticipated it would be difficult and encouraged us to sign a consent for him to have nitrous oxide. We did allow this, but it was really sort of hard to watch your 8 month old look all silly and glassy-eyed (i.e., drunk), but I guess it was better then the screaming he would have done if he had been more conscious and aware of their efforts to find a vein. Anyway, I have so so much more empathy now for all parents (and small children) who have to have surgeries and invasive medical treatment. In fact, our hematologist at Children’s Hospital is in the same area as the oncologists, so on Tuesday morning we were surrounded by lots of little kids who had lost their hair and were looking fairly listless. Chris and I will be  so much more conscious now in our giving–we will give so much more to Children’s Hospitals (such as St. Jude’s, which we already support) and other non-profits who research childhood diseases. I watched a show on Autism recently. I learned that they have such difficulty raising funds for research because, in general, adults only want to support research for diseases they might one day get, like Alzheimer’s and adult cancers. It is so hard to watch your child suffer. Chris and I would have hopped up on that table a thousand times yesterday if we could have kept Josh off of it.

As an aside, this really also gives one an opportunity to realize the amazing sacrifice that God made in sending his only son to earth to take on known suffering for us all. Sometimes you have to watch your child suffer, because you know it is for his or her greater good. But man, to know that it is for the sins of your other wayward (and most ungrateful) children?

Anyway, the results. Josh has bilateral hearing loss. It is mild loss in the higher frequencies and moderate loss in the lower frequencies. The tube insertion really didn’t do much to improve his hearing. It perhaps gave a slight boost to the right ear. Unfortunately, for whatever reason, the tube in the left ear isn’t functioning properly and that tube may already be on its way out (per the ENT) so we will have to monitor it carefully with frequent visits to our ENT. The CT scan showed that his overall ear anatomy was “grossly normal.” This is actually good news. This means his cochlea, or inner ear, is functioning as it should and developed normally. In fact, when the audiologist bi-passed Joshua’s outer and middle ear (going straight to the inner ear bones), Josh had normal hearing. This means that Joshua’s loss is purely conductive. And this is the reason that both the ENT and Audiologist had such high hopes that the tubes would resolve Joshua’s hearing impairment (thinking the loss was caused by fluid). Unfortunately, the fluid is gone and his hearing hasn’t improved.

The ENT can’t know for sure what is causing the conductive loss (as the CT scans are not powerful enough to show this level of detail), but she thinks that, for whatever reason, the bones of the middle ear simply do not move as freely as they should to effectively conduct sound waves. When Josh is older, he might elect to have exploratory surgery to try to determine the cause of his loss and, perhaps, to have an ENT attempt to fix the issues. Such a surgery would be inappropriate at this time. It would also bear the risk of permanently damaging his cochlea (and causing more severe hearing loss). At this time, Chris and I really think that we’ll leave the decision for such surgery up to an adult Josh. We are, instead, quite content to proceed with hearing aids to amplify the very good and workable sound that Josh is already receiving. In fact, while Josh was sedated, we went ahead and got ear molds made of Joshua’s ears, so that we can get moving on hearing aids ASAP. So that’s the next step. We were also referred on to genetic testing. I guess anytime congenital hearing loss is confirmed, they do further genetic testing to 1) try to find determine the cause and 2) make sure no other systems were impacted at the same time the ear development was interrupted. Also, to the extent they can determine a cause, they may be able to determine whether there is a risk that the loss will be progressive.

So, we had a mixture of both good and more difficult news yesterday. Chris and I are a million times over blessed by Joshua who was fearfully and wonderfully made. I remember a moment last spring, when I was so sick, in church. I had been experiencing lots of spotting and was very worried about the pregnancy. I remember having this reassurance that God was carefully knitting the baby together in my womb. I still believe that Josh was carefully knit together by God’s mighty hand. God is an awesome God. Of this I have no doubt, even given all of the prayers that Josh’s hearing be “normal”). I don’t treat God like a fast food restaurant drive-thru–thinking my prayers will just automatically result in the exact order that I’ve placed. (footnote 1). Instead, I believe that God has answered our prayers mightily and Joshua’s hearing loss will be just a part of who he is, but it won’t define him. I like to think of Josh as being “hearing challenged” rather than “hearing impaired.” Maybe, ultimately, Josh will become an excellent listener. Whatever Josh becomes, we are enormously blessed by this little guy who was fearfully and wonderfully made.

Thank you all for your prayers and support!

Footnote 1: This past year (I have no idea when or I’d post a link to the interview–this past year all runs together) I heard an interview with Dar Williams, a favorite folk singer/songwriter of mine, on Minnesota Public Radio. In it she admits that she believes in God. In high school, she was a more outspoken (albeit liberal) Christian (much like myself in high school, although I was very right-wing conservative, in keeping with my family of origin’s belief system). She wrote a funny song, “Teen for God” about that period. Anyway, in college she struggled with her faith (as I did as well–I think this happens when you learn about other world religions and stop viewing your own belief system as the center of the universe). She later had a friend who was critically ill. She said she began to pray and pray for her friend’s recovery but her friend died anyway. She said that the morning after her friend died, she decided that she believed in God. I don’t know what this has to do with anything, I am just writing today here up on my blog because my journal is downstairs and I need to engage in writing therapy but I’m too comfortable in the chair in my bedroom to walk downstairs and get the journal. And Josh is taking a nice long nap–I think yesterday wore him out. Oh, but now he stirs. Time to press “publish” and release this mammoth blog entry to the world.

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3 comments
  1. Sarah said:

    Heidi,

    This is a beautiful post. I’m glad to hear that Joshua’s hearing loss isn’t as significant as it could have been. Praying for him regarding the hemophilia.

    Grace had the opposite problem. She is so tiny and has such tiny little veins, we had to go in twice to have blood drawn on her. The first time there were 3 nurses in the room who tried multiple times to draw her blood, but just couldn’t do it. It was so sad to see the tears running down her cheeks.

    Blessings,
    Sarah

  2. The statement of wanting to climb up on the table to take Josh’s place brought tears to my eyes- there have been so many times I wished it could have been me, rather than Nolan, going through all the medical stuff.

    Josh’s loss sounds a lot like Nolan’s. Nolan’s was 40dB rising to normal at birth (sensorineural), and now we have a moderately severe mixed loss with a conductive component (no fluid at the time of the last test- we’ll see what happens at our next hearing test on Thursday).

    Sending lots of prayers your way. For an easy transition to wearing hearing aids (pilot caps from Hannah Andersson help a lot with keeping little hands away) and for the hemophilia concerns.

    • motherimperfect said:

      Oh yes, I remember reading on your blog (and others) about the useful nature of HA pilot caps. I need to put in an order promptly!

      Thanks for your prayers and support.

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