Some people   2 comments

So because my boys were born at 26 weeks and 5 days, we have had a series of reoccurring doctor’s appointments for them, well mostly for Nathan.  When the boys were discharged from the hospital, they came home on oxygen and monitors.  While we were lucky that they came off of those within 3 months of coming home, there are still other follow ups that we haven’t done so well with. Both of the boys will see the pediatric eye doctor the day after their birthday just for a follow-up to make sure there eyes are ok, which they always have been, but if something has changed now, that will be ok too!  Actually now that I think of it, since they will be 3 in a little over a month, Ethan has been cleared from everything he started with, which is a blessing, since he was the sickest of the boys!

I wish I could say the same for Nathan.  He has been cleared from the pulmonary doctor and also his ENT! Our lovely ENT saw him at the beginning of the month after his latest hearing test, which I thought went a lot better than it actually did, according to the report.  He has a follow-up with his cardiologist in May, and of course the eye doctor, and then at the end of May, child development services will come and evaluate them both.

Nathan has only passed one hearing test in his short almost three years of life, and it was a sedated one at six months of age.  I can still recall that day like it was yesterday.  Mind you, he has had 2 surgeries since then for Ear tubes, but nothing was as hard on us as that day of his sedated hearing test.  And I think that is mostly because we learned a hard lesson that day.  The day he was sedated for a hearing test, they offered to let my husband or I hold him as he went to sleep.  And we thought that the better of us to do it would be my husband as Nathan has always been a big daddy’s boy.  And we figured after everything that we had gone thru in the NICU that wouldn’t be a big deal.  Well we were wrong! Jason holding Nathan as he went to sleep was horrible, the last thing that he did before they took him out of Jason’s arms was roll his eyes into the back of his head! this was the worst experience ever! And I can compare it to the days in the NICU when their numbers would drop and they would turn a blueish grey color.  Now those were scary days as well, don’t get me wrong, but not as scary as seeing your tiny babies eyes roll into the back of their head and have their body go limp! That taught us the lesson of not walking him into the operating room for his tube surgeries, we walked him to the door both times and before we knew it, the ENT was looking for us in the waiting room cause the surgery was over.  Wow, I carried on a little bit there…Sorry!

Ok back to the last hearing test.  When I took Nathan 6 months ago for a hearing test, we didn’t get the normal audiologist, we got a different one.  Well right in the top of Nathan’s chart it is written in big red letters “DO NOT LIGHT UP ANIMALS AND MAKE ANIMAL SOUND DO ONE OR THE OTHER” now, wouldn’t you think that they would pay attention to that small detail, especially since before I took Nathan into the sound booth, I made sure that she knew not to do that, because it scares the crap out of him! Well she didn’t and that didn’t result in the best of hearing tests, because he was scared from the beginning. And not to mention she and I didn’t get along, well the report confirmed everything I just said, the hearing test wasn’t that accurate, because she only got minimal responses from Nathan.  And wouldn’t you know that I was uncooperative because I asked her not to light up and make the animals make noise.  So when they called me the day before his hearing test and ENT consult, I asked which of the audiologists were going to be there and they told me it was the one we liked! well that was just fine with me.  However when we got there, I was very disappointed to see the other one walking around in the office behind the check in area.  When she walked out of the office to get him she said “well aren’t I the lucky one to get to test Nathan’s hearing today” and i spun around and replied “well aren’t we the lucky one to get to deal with a grown up that doesn’t listen today.” Ok I’ll say it, I was probably wrong to say such a thing but after our previous results that is what was going thru my head, and apparently I need to think before I speak.

In the exam room we went.  She asked the normal questions and I answered them, then she engaged my son in about a ten minute conversation, where I didn’t have to translate anything he was saying to her.  Now that would say to me that she understood what he was talking about.  so we went into the sound booth and started the test.  Now this time for the test she had a little table and chair set up and some puzzles for him to do.  Her first problem was that he didn’t want to sit in the chair, she told him he had to and he started to cry.  So I asked her if since I had to sit in there with him, if he could just sit on my lap or stand right with me, in front of the table.  She told me she would prefer that he sat alone but figured if that was the only way to get him to respond to the test, then that would be fine.   So she started the test and he was really responding to her.  I was impressed as I thought that was the best results we had ever gotten from him in the sound booth.  She told me that she wasn’t going to bother doing a couple of the different tests because she was happy with the results that she got from this test.  And we were done with the test! Next we saw our ENT who told me that he was pleased with Nathan’s hearing and he saw no need for further testing.  That if a problem occurred when he was older than we could come back and do a repeat hearing test to see what the problem was.  I was so happy!  I thought, one less thing to have to put Nathan thru! But then the report from the audiologist came in the mail and I was shocked at what I read.

She said that the overall results of Nathan’s hearing test was that he had substantial hearing loss in both ears and should be sedated for a follow-up hearing test to show the accurate hearing ability in both ears.  She said that he strenuously refused the few tests that she told me she wasn’t going to bother trying to do!  Oh and he needed to be re-evaluated by speech therapists because there was no understanding anything he said, and he certainly wasn’t speaking at an almost three-year old level. This left me in tears! I couldn’t believe what she had said about my son! I called and requested a new report written up and I was told that I couldn’t have one, that the original report was what we would have on file for Nathan, but if I wanted to, I could write a letter explaining to them what I thought was wrong with the report.

So now, a week after I got the original report in the mail, I am sitting down at my computer to type my letters and I just keep flashing back to the day of the test and how well it went, and how she kept saying what a good job he was going.  And then why would our ENT say he didn’t need any follow-up if according to the audiologist, he can’t hear or speak!


Posted March 24, 2011 by mytwotornados in Nathan

2 responses to “Some people

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  1. My heart broke reading this. I can’t imagine how you’re feeling and I’m so, so sorry.

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