Wednesday, October 23, 2013

Update on Faith's hearing

We had Faith's appointment with the ENT last Tuesday.  If you remember, we've been concerned about her hearing for a few months so we had it tested at our pediatrician in August.  When she "failed" the test they referred us to the local children's hospital where they did some more testing.  Then the audiologist at the hospital referred us to the ENT at the same hospital.  We had to wait two months for that appointment so I went into the appointment ready for some answers and a plan!

The doctor took a look in Faith's ears and declared that "no one has ever been able to see deep enough into those tiny ears" to diagnose anything.  Small "pipes" are common in children with Down syndrome and there are several babies in Faith's baby class who have already had tubes put in their ears.  He tried to clean the wax out of her ears, but gave up relatively quickly because he didn't think he'd be able to see what he needed to see anyway and didn't want to torture her any more.

(Side story: The doctor and the nurse had to hold her down while he cleaned her ears out.  As soon as they released her into my arms to comfort her, she whipped around and stared them down while yelling at them.  I kind of giggled at that.  She likes to show you how she feels.)

He gave us the choice to come back in a few months to check again, but I quickly said that I was ready to move forward.  My gut tells me she needs tubes and I don't want to unnecessarily delay what she needs.  He agreed.  So the plan is to put her under anesthesia and clean her ears out.  Then they'll check for fluid behind her ear drum (I think he said they'd put a small slice in her ear drum to check for fluid! Ouch!) and if there is fluid present then they'll put the tubes in her ears.  I will be shocked shocked if there isn't fluid back there.  Shocked.

Once they diagnose and hopefully fix the problem, they'll do an ABR (Auditory Brainstem Response) test - it's the same hearing test they do for newborn screenings - to see if her hearing has improved.

She also needs an MRI to check the enlarged ventricles in her brain.  This is something that's been present since her birth - nothing to do with DS, just a luck of the draw kind of thing - that we've been monitoring with ultrasounds every few months.  So far, they haven't caused problems (enlarged ventricles can lead to fluid build-up - hydrocephalus - which can cause lots of other problems) and the doctor told me that if there hasn't been a problem by 6 months of age, there usually isn't going to be a problem.  The MRI is something they want to do at around one year of age to get a better look and confirm that everything is all good.

Because she'll have to put under anesthesia for the MRI, we are trying to coordinate the ear surgery with the MRI so she only has to be put under once.  The doctors agree that it's best to minimize the amount of anesthesia a child is exposed to so they think it's a good idea to combine the two procedures. The only problem is we now have to coordinate with two different departments of the hospital and find a date that works for both departments which means....we have to wait.

The wait may actually be a good thing because we recently found out that we should qualify for Medicaid now that we have updated Faith's Social Security file with our data.  I sent in the initial application Monday so I'm hoping we can get that going without a hitch - barring another government shutdown.  Ha.  Too soon?

We don't have a date scheduled yet, but I will want to enlist your prayers for Faith and her mommy who is sure to be a bit stressed.  It's certainly no brain surgery, but anesthesia is no small thing.  And I fully expect good news from the MRI, but there's also a reason they do them - just in case there's a problem that has gone undetected.  I know both procedures are necessary and I'm grateful we can do them both in one go.

Here are the prayer requests as of now:
- peaceful hearts for the Husband and me
- strength and health for Faith's little body
- good news on the MRI
- perfect timing coordinating the schedules of the OR (for the surgery) and radiology (for the MRI). We want it on the calendar as soon as possible (hopefully before the end of the year for insurance purposes), but after our Medicaid application gets approved so there are no complications with that
- speed and simplicity for the Medicaid application to get approved quickly and without a hitch - that will make a huge difference for the medical bills that will start showing up in our mailbox!
- a successful surgery that results in improved hearing for Faith-baby

Thanks for remembering us in your prayers!  I'll be sure to write more when we have a plan in place.

Until then:
BAM! Cuteness!

1 comment:

halley said...

We dont know each other personally, but I am a faithful (no pun intended) follower of your blog. I wanted to tell you that when my niece had tubes put in, it totally changed her life. She went from non-verbal to talking up a storm in the matter of a few weeks. You could tell from day 1 that she was hearing things she had never heard before. Her life improved in countless ways! Its scary to have to give a little one anesthesia, but they are so, so resilient. Also, the doctors do this procedure a million times a day, and could probably do it with one hand behind their backs. I am sure your baby will be just fine, and she will have a whole new world around her when she can really hear!