Saturday, November 22, 2008

hallelujah!

There is a portion of my son's healthcare/diagnosis that I have not blogged about yet, both because it felt quite personal and painful, and because it has been rather up-in-the-air.

Because his problems are related to cranial nerves, many symptoms present themselves that don't necessarily seem to make sense at first. The first neonatologist, at the hospital where our son was born, suggested he might have hearing loss because that is often a result of cranial nerve damage/deficiency. We were frightened of that, especially since there was some question of whether or not he could see, also.

At the second hospital, it was determined that his eyes were ok, and we now know that he definitely sees. But his hearing seemed deficient in every test. Two ABR (or BAER) tests were performed in the NICU, both with questionable results because he was not sedated and moved a bit during the tests. They were performed by EEG techs, and read by a neurologist, but no one in the NICU seemed to be able to tell us what the results meant. It was frustrating, to say the least. Eventually, after the second test was performed, and we begged for some answers, a nurse practitioner looked at the results and told us our son had complete bilateral hearing loss.

Oh my goodness, imagine what that was like. Complete bilateral hearing loss. Our son could not hear.

We went home, told our family and friends to start learning sign language, and I immediately began investigating deaf infant programs in our area. I was so sad and scared. Our son had enough problems with his feeding issues...why this too?

A day or two later I asked to speak with the neonatologist on duty to confirm this hearing diagnosis. I got another nurse practitioner, which did not surprise me as they are the liason between the medical team and the family. She gave me the same information as the first NP.

The next day, I finally got the neonatologist to come talk to me. As an interesting aside, his own 4 yr old daughter has cochlear implants, so I thought surely he would be sensitive to this issue and give me some answers. He came into the nursery, informed me that a) they were more concerned about his feeding than his hearing and b) he had not seen the test results. He then proceeded to tell me all the possible fixes for hearing loss, all the while not really knowing if any of them applied to my child.

Perhaps some of you have had children in the NICU - I wonder if getting information was like pulling teeth for you as well.

Finally, after a couple more weeks when discharge was looming, Hubs and I demanded a meeting with audiology and the NICU team to determine what, exactly, we were to do with this hearing situation. During that meeting, the audiologist, who I have come to know and love, looked at the test results and said she could not confidently say our son had complete hearing loss. We went around the room and NONE of the medical professionals in the group could even INTERPRET the results, much less give us an informed diagnosis. (The two NPs who had told us our son couldn't hear were not present at this meeting - it was not their shift.)

So. I was ready to kill someone at that point and told the room as much. I let them know how angry we were to have been told incorrect information, and I told them who disseminated it. I know that original NP was spoken to, and it was suggested that I write a letter to either the director of nursing or the medical director of the NICU. I am still pondering that. It is so, so irresponsible to give families incorrect information like that. I wanted to throw a brick at her face, I'll tell you what.

Fast forward a week or so, and we have the same test performed in a sound-proof booth by the actual audiologist. She also performed a tympanogram (puff of air blown against the eardrum to check for movement). She determined he has very mild loss bilaterally and it is conductive. That means the cochlea works, and the nerve is taking the sound info to the brain stem. The problem is somewhere between the outside world and the middle ear. His eardrums did not really move, so something was definitely structurally wrong. She confirmed that he can, in fact, hear us, and can hear very high pitches quite well. If we speak loudly he should be able to basically understand us, but it may be muffled.

Fast forward again to this morning. We had an appointment with a pediatric ENT specialist, who took one look in our son's ears and said, "yep, there's fluid in there." That is why the eardrums don't move.

FLUID!

We went from "your son is deaf" to "there's fluid in them thar ears."

In 3 weeks our son will (unfortunately) have surgery again, this time to place tubes in his ears. While he is anesthetized, he will have the ABR performed again by the same audiologist to determine that the tubes did the trick. The ENT guy is pretty sure that should do it, though, and our son will hear just fine.

It turns out this is a common problem for kids with cranial nerve trouble. The muscles that open the eustachian tubes don't work properly, so fluid does not drain.

Last night before I went to sleep I prayed a shoddy little prayer - something along the lines of, hey God, how about you give us a break on this one? And he has. Oh, praise Him, he has cut us a major break. I wish surgery wasn't required, but people, fixing this will give him language! Praise God!

So to wrap up, I want to remind all of you parents out there that you have a right to ACCURATE information about your child and their health care. Sometimes you have to fight and be demanding and even be kind of a pain in someone's ass, but that is our job, no?

7 comments:

Jenn said...

I'm so glad you got that figured out - as an aside, I had to have tubes put in my ears (on christmas day, I was so sick), and I can hear now fine. I hope that's the case with your little man!

Mrs Lemon said...

I'm so happy this barrier has been lowered brick by brick for your family. That is really irresponsible for them to tell you that. I mean, on top of the feeding issues, they just throw in "your son is deaf" like it's no big deal? come on! Have some consideration!

(better not ask me to write that letter :) )

Karen said...

Oh Kate, what fabulous news!!! I'm glad you're finally get answers and ohmyword I don't know how you refrained from strangling those neonatology people.

Lucia said...

That is indeed wonderful news.

I have actually had an issue myself recently with not being able to get the right info and people giving me conflicting stories... but it had to do with our cable bill. That was frustrating enough, and when I got things cleared up I gave them an earful (as it were) -- I would write that letter if I were you, and I would not mince words. (Having been a language major, I know quite a few choice expressions from far-flung places, should you be interested.)

Ruth said...

Write the letter, and copy it up and down the ladder. Do not mince words. This situation was infuriating, irresponsible, and Should Not Be Repeated.

As for the ear tube surgery, after all your boy has been through already it will be nothing. Her Ladyship had tubes put in when she was 18 months old, and we ended up wishing we hadn't waited so long.

I'm glad you've caught a break on this. You all are long overdue.

julie said...

Yeah...you should write the letter. For your sake, for the sake of parents who could be in your situation. I have a friend who was told her daughter was completely deaf just as they were ready to leave the NICU...and her hearing is now fine. The emotions you're writing about sound like what she describes. Have you ever visited shareyourstory.org? It's a blog/message board for NICU parents by the March of Dimes. Lots of parents have told me they've found it helpful because there's just something about a NICU experience that non-NICU people just don't get. So good to hear your news!

Beth said...

Ugh hated the NICU months.

We ran into the joy of our son got transferred because he needed emergency surgery (hi Christmas 2005)... but then we realized that some things that were noted at the medical only NICU on Main Street got lost in the move a mile away. (like his hip dysplasia, possibility of a genetic disorder, etc.).

Do I even want to mention the joy of going to the birth-3 follow-up clinics? Yes, I know my son is delayed...