Owen has his cochlear implant!!
The surgery went well and now Owen has his cochlear implant. I'll admit that
it is somewhat anti-climatic because they can't turn it on for a full month.
They have to wait until everything heals before they start putting current through
it, but it's going to be a very long month!
The surgery took about three hours from the time they put him to sleep in the OR
to when Dr. Buchman (his surgeon) came out to tell us he was done. That was
Owen's longest surgery yet, by far. The shunt surgeries are an hour or less.
So it was a long time in the waiting room for this one. Our daughter was with
us though, so she kept us busy entertaining her the whole time. She held up
remarkably well since waiting is not usually a six year old's strong point.
Dr. Buchman said that there were no surprises during the surgery. The only minor thing
that happened was that apparently since Owen's cochlea is not completely formed that
area communicates CSF with his brain. So when he punctured the inner ear to put
the probe down into the cochlea some CSF came out. At first we were horrified, but
he said that it happens in about 50% of the cases where there is a misshapen cochlea.
The inner ear is sterile, so there shouldn't be a problem with infection and apparently
the hole should close up on its own without a problem. We have been told to watch for
CSF leaking from the ear or nose over the next few days just to be sure.
Other than that he was very pleased with how he was able to place the probe from the
implant. Of the 22 possible electrodes he was able to get 20 of them into the cochlea,
even though the cochlea isn't fully formed. This was better than we were hoping for.
The original implants only had 2 electrodes, which was very quickly folled by ones with
4 electrodes and then for a long time they only had 16. Some models still only
have 12, so getting 20 is pretty good.
They did a CT scan the night after the surgery just to be sure that there wasn't
CSF building up anywhere and to check the placement of the implant one last time
and everything looked good.
After the surgery they put a huge bandage on his head that we were supposed to keep on
for 5 days. I wish I could have gotten a picture of it, but he mangled it so quickly
that I never got a chance to. So you can see a picture of little Mariah with
her bandage below to get an idea (thanks to her family for the picture!). Mariah
had both ears done at the same time, so she has two bandages:
Mommy had to improvise because we just couldn't keep the bandage on so I made a
trip to Joann's Fabrics and bought some sundress material, which is super stretchy,
and made a hat in the hotel room. Sundress material doesn't come in boy colors, so
it's a beautiful pink :-) You can just see the white bandage sticking out below
the hat on the right side. The puffball part of the bandage is about half of
its original size because it kept shedding until I stuck band-aids all over it
to hold it together.
Owen is home now and healing nicely. The doctor said this isn't a very painful surgery
and that seems to be the case. He hasn't even needed Tylenol since the day after the
surgery. Below are the pictures of his incisions that I took today:
You can read all about how cochlear implants work and what their parts are
on the new cochlear implant page.
Tomorrow we go back down to UNC to have Dr. Buchman check out his progress
for his post-op checkup.
It should be a short appointment, but it's always nice to have the doc tell us
that things are looking good. Then it's just wait, wait, wait until hook up, which
is scheduled for September 12th.
I'll close with a picture that I took of Owen this morning with his big sister.
Progress - September 10, 2008
Almost There!
It's just two days now until they turn on Owen's cochlear implant.
Last night we got the automated call from the audiologist's office
to confirm the appointment. We couldn't "Press 1 to Confirm" the
appointment fast enough. As if we would need a reminder for this
appointment anyway! Wild horses and elephants couldn't keep us
from showing up in that office on Friday.
Owen went in for a routine CT scan on August 22nd to get a baseline
for his new shunt. The scan showed that everything is just fine,
his ventricle sizes are stable, but we got an added bonus. It happened
to catch a view of his cochlear implant. You can see the profile of the
internal piece of the implant from the side, and it even caught the
electrodes winding their way into the cochlea.
I will post a new entry on Friday night letting everyone know how the hook up
went. We are trying very hard not to get our hopes up too much or to get
too excited, but we are failing miserably :-) It seems like it will be a month
between now and Friday, but in the end I'm sure the time will fly by and we'll
be sitting there watching them turn it on before we know it.
Progress - September 12, 2008
They Turned it on and Owen Laughed!
Well today was the big day!! They turned on Owen's cochlear implant
and we were all very pleased with the responses, although they weren't
quite what we expected. We thought that he'd either just turn his head
and look around, sit quietly and do nothing, or maybe cry. I'll admit that
breaking out in squeals of laughter never occurred to me. In the video
you'll see that he starts out by just changing his facial expression,
but by the end he is breaking out in laughter when they are doing their
testing.
He did the laughter thing many times and the audiologist could tell
that it was timed correctly to be in response to the sounds that
were being fed to the implant, or strangely enough, in response to
the sound stopping. It was as if he wanted to be quiet while the
sound was happening so he could hear it, and then couldn't restrain how
happy he was about
the whole thing once the sound was finished. I didn't get them all
on camera, but we did get one. After the one in the video they had to
take off the coil for a few minutes to save the program and as soon
as they put it back on he started laughing again. When Daddy went to
strap Owen in the car the coil came off and so Owen couldn't hear anything
for a few minutes. As soon as Daddy put the coil (the round piece
stuck to the side of his head) back on Owen started to laugh.
You can click on the link below to see a video of the highlights
of Owen's hook up. It is about three minutes long.
Owen's sister Sammy came with us and it was a big day for our family.
I know that she has been looking forward to this day just as much as her Mommy
and Daddy have and it was wonderful that we could all be there.
When we got home I took a few pictures of his shiny new hardware
while Owen was getting a few minutes in his stander after being
cooped up in a car seat for 6 hours today.
So all in all it was a great day. We have a long road ahead of us and
it will still be a long time before we know whether or not the sound
is clear enough for him to gain speech, but for today we are very
happy.
Progress - September 16, 2008
Things are still looking good!
Well, it's been a few days and I thought I'd take a minute to write
a bit more about our whole experience. My entry the other night was
to spread the good news before we all crashed from the emotional high
we were on, and from the adrenaline we had been running on all week.
Now that things have had a chance to calm down I thought I'd fill in the
details.
If you've been following the story then you know that we had to wait
four weeks between the surgery to put in the cochlear implant and when
they turned it on. This was a very long month of waiting, and I am not
good at waiting. We flip flopped between being unbelievably excited and
telling ourselves not to get our hopes up. I don't think either Daddy or I
slept much at all in the nights just before the hook up. As soon as the sun
came up on the big day, I was up. I couldn't just lay in bed so I got
up well before the alarm to take a shower and start packing up the car.
It was only a day trip, but babies (and their big sisters) can fill up
a car just to go across town. As a family we are never on time
for anything. And yet this day we were sitting in the car and ready
to go right on schedule.
It was a rainy and foggy drive down, but luckily there were no major
traffic backups. We mostly take back roads anyway for this trip because
there aren't any major interstates that go directly between here and there,
so traffic isn't usually too much of an issue. We got there with 45 minutes
to spare, which gave us time to feed Owen and his sister before his
appointment. We were a bit worried that he might want food/nap with his
appointment being at noon, but we would have had to wait several more
weeks to get a better time and that wasn't happening. We got into the
office 15 minutes before our appointment.
Now it might be possible that some day, in some far off land that a patient
will be called into a doctor's office at the actual time of their
appointment, but I've never seen it happen personally and I don't really
believe in such fairy tales anymore. This day was no different. Ten
minutes after our appointment they came out and announced that they
were getting the room ready for us. Why? Didn't they know we were
coming? I am not a patient person by nature and I think I was ready to
beat down the doors if they didn't get us in soon. In the end they
were probably only 15-20 minutes late, which is remarkable for any
office, but it seemed like forever.
The whole appointment took about 2 hours. They put the external parts
on and then they ran a whole bunch of tests on the hardware.
The audiologist said that
several of the electrodes weren't responding and it was probably due
to a manufacturing defect, but that they might decide to work in the
future. So much for advertising 22 electrodes if they don't actually
work, and it's not like you can just swap a new one in easily. So
for now we're working on 18 electrodes. We know that only 20 made it
down into the cochlea, so that may be part of the issue. Perhaps the
last two that they thought they got in didn't make good contact. Oh well,
in theory you only need 8, so we've got 10 bonus ones, right?
After the hardware tests they tried testing the nerve for responses.
This is called neural response telemetry or NRT. They send electrical
pulses through the electrodes and can measure the responses back from
the auditory nerve. They were only able to get a response from one
of the electrodes, but the audiologist said that sometimes children
who have never heard or have been completely deaf for a long time
will need some time with stimulation of the nerve before it will
respond well to the tests. So we moved onto the more subjective tests
to see what would happen.
The next thing they did was to send tones directly into the implant with the
microphone turned off so that there wouldn't be any background noises.
These are the tests that you see at the beginning of the video
(see previous entry) where
Owen is furrowing his brow and showing the looks of concentration on his
face. In this test you can hear the tones on the computer's speakers as
they are being fed to the implant.
She then tried turning on the microphone so that he could hear us.
This was a surreal moment to realize that it might be the first time that
he was hearing our voices. He didn't give us any real reactions, but
it was a nice moment anyway. Then we got back to the computer
generated testing.
On this test they ramped up the volume
and this is when we got the giggles.
We didn't get the first round of giggles on the video camera, but the
audiologist decided to see if we could reproduce the effect, or if maybe
he had just found something in the room funny. So she backed off the volume
again and then slowly headed back up and sure enough, at the exact same
point, he started giggling again. So with that information she declared
that it didn't matter what the NRT said, it was fairly obvious that something
was getting through. This also gave her a starting point for the mappings
that they would send us home with. To load the mappings they had to turn
off the speech processor. When she put it back on, he immediately
started to laugh again.
At this point his sister came over to sit near him and talk to him and then
she did the oddest thing. She got the biggest smile I have ever seen on
her face and she looked like she was going to burst into tears. And then
she said, "I'm sorry Mommy", as if she didn't quite understand it herself.
And then she said, "This is good, right? He really did hear something?".
It was very clear that she was just so very happy that things had worked out
the way that she had hoped. If you have never met my six year old
daughter, it's hard to understand just how special she is. She can tell
you in intricate detail and full technical language exactly what a cochlear
implant is, how it works and what we expect from it and she completely
understands what all that language means. It's hard to believe sometimes
that she is only six when she talks. And yet deep down she is just a six
year old sister who wants desperately for everything to be OK for her
brother. She wants him to be able to hear her when she reads stories
to him. She is just as anxious for him to learn her name as we are for
him to say MaMa and DaDa. So I think she was just a bit overwhelmed
at that point. I'm so glad that we brought her because I think that is
a moment that both she and I will remember forever.
So we went home with our 4 programs loaded into the speech processor. They
start out at a very low volume and work their way up. If you have never
heard before it would be incredibly overwhelming to suddenly hear the whole
world at normal volume. They told us to up the program every 2 to 3
days if it seemed that he was tolerating it.
Each program is a bit louder than the one before it. If it seemed that he
was having trouble coping then we needed to back off the program to the
previous one and wait a few more days. They also said to
watch to see if his face started to twitch - indicating
that he was getting too much electrical stimulation near the facial nerve -
and if that happened we should back off to the previous program and call them.
For the first two days on program 1 we didn't really notice anything
significant. It did seem that maybe he was paying more attention to faces
while we were talking, but nothing definite. On Sunday we turned him up
to program 2. We still didn't see anything definite - again he *might* have
been paying more attention to his surroundings, but maybe not. One thing
that people who have never dealt with a deaf child might not realize, is that
they spend a great deal of time in a world of their own. Owen is a very
affectionate child, and he craves touch and contact.
But if he can't see you,
then you aren't there and he just picks up a toy or a book and loses himself
in it. Hearing children know that you are still in the room when they can't
see you, because they can hear your voice. Deaf children are alone when
you are out of their sight. So this is the first thing that we
were hoping we would see - that he would start to notice that things
were still happening even if he couldn't see it.
On Sunday night Daddy and I were discussing that we didn't really know if
the programs that they sent us home with were as loud as where he responded
in the office, so we weren't sure of what he should respond to. The
audiologist had said that he would only hear loud sounds, which would
not sound loud to Owen. But we really wanted to know if we were even in
the ballpark yet to where he was set to in the office. So I fired off an
email to the audiologist so that it would be in her Inbox when she got
into the office in the morning. Bless her heart though, she answered it
just a few minutes later. I hope that she was checking her email from
home and that she wasn't still in the office! She said that we were
a bit lower than where he giggled in the office, but that he had shown
some reaction at where program 1 was (probably the furrowing of the brow
from the video). She also said that they were only testing with
one electrode in the office, and that with all 18 on now it would seem louder.
She said that we could bump him up to program 3 a day
early since he wasn't showing any obvious reactions.
So Monday morning when we turned it on, we went up to program 3. And
here we thought we might be really seeing something more. Now we have
had many people ask us if he has tried to say any words yet and honestly
it's just not going to be like that. A normal baby starts hearing in the
womb. My daughter recognized my voice within minutes of being born and
turned her head to me when she heard me talk while they were cleaning her
off. Then they hear for quite a few months before they even start to coo.
It isn't until around a year that most kids say their first word. Owen's
ears were just born last Friday, he's going to need to learn what
to do with sound, just like a newborn would. At this point he
doesn't even know that he *should* respond to sound, so we need
to start by teaching him that.
So we are looking for much more subtle signs. Owen has always babbled a lot.
This is unusual for a deaf child, by two years old he should be all but
monotone according to the audiologists, but he has a wide range of sounds that
he makes all the time. In fact he is rarely quiet. So we are hoping to
see some differences in his babbling. Some new sounds that we haven't heard
before. But even that will take time.
After we turned the speech processor up to program 3 he seemed to really
start paying a great deal more attention to our faces while we were talking.
He has been on that program for two days now. He has several toys that
make noise that he has never shown any real interest in, most notably
a LeapFrog ball that plays music or sings the alphabet when you spin it.
He has never cared for this toy and it has never held his interest for more
than a few seconds. He has been playing with it for the last two days for
long periods of time. The ball has a feature where if you haven't spun it
for a while then it plays a quick little tune to get your attention (I guess
it gets lonely). Both Daddy and I have seen him roll over away from the
ball to do something else, and then turn back to the ball to
play with it after it plays that tune.
I have been sitting next to him quite a few times with the house nice and
quiet and then, without moving, said something to him and had him move his
eyes to look at me. Today Daddy sat with him for a solid hour and just
listened to music. Owen doesn't sit for a solid minute without squirming to
get down anymore. He's almost two (only a few more days to go!) and he
has things to do! Yet today when Daddy turned on the music he just sat
there. At one point Daddy took off the coil and Owen started to fuss.
He put the coil back on and he settled right back down.
So there is no definitive/absolute answer except to wait and see what
time tells us. But we have seen enough things change that we are hopeful.
Owen is coming out of his shell and is laughing more and more with us.
He has always been a happy baby, but in the last two days he seems to be noticing
a lot more and he seems to like it. He seems to be spending more time
looking around and less time absorbed in his own toys. And so for today,
again, we are happy.
On a lighter note, I have to share with you the swag. Anyone who has been
to a professional conference can tell you what swag is, it's all the free
stuff that vendor's hand out to try and get you to buy their products. I
haven't bought a T-shirt since 1999 because of one programming conference
that I went to. When they rolled Owen out of surgery there was a stuffed
koala bear in his crib wearing a Cochlear t-shirt. The Cochlear corporation
is an Australia company and they are the ones that make the Nucleus Freedom
implant that Owen has. A week or so after we got home we received a nice
tote bag in the mail and a handy little carrying case for extra batteries
all with the Cochlear logo.
After the hookup they gave us a second koala, and this one has its own
speech processor and coil. They also sent us home with a nice journal book
with the Cochlear logo, a year's supply of batteries, an extra speech
processor and coil, extra cables, extra microphone covers, extra clips
to attach the speech processor, a drying unit with a UV light and fan (!),
a carrying case for the extra processor and coil, and much, much more.
The box it all came in was so big it almost didn't fit in the trunk of the
Honda. I haven't taken a picture of all of the stuff that we brought home,
but I did get a picture of Owen with some of the swag a few days before
hookup. You'll notice that even his T-shirt is swag: it was given to
him in the PICU at Duke during his shunt infection:
We are also very pleased that Owen has finally been able to resume all of
his therapy. He had about a week in between the surgeries this summer
where he could have some physical therapy, but really he has been off of
that since late May. OT has been spotty because of all the surgery too,
just because he hasn't been around. So yesterday he started PT again
and he is doing so great. I will have to take some pictures of his
latest skill, he can finally pick his head up off the ground by pushing
up on his hands. And he does this on his own now, not just when you
work at it during therapy. He has also stopped rolling and has moved
onto a sort of army crawl, and he even sometimes picks his head up to
do it! Below is a picture of him with his occupational therapist
Vesna. She is awesome and Owen loves her. She seems to be able to
get him to do just about anything. Today she wanted him to do some
weight bearing on his hands, so she put some lotion out on his tray and
let him swirl his hands around in it as he pushed against the tray. He
had a great time!
And finally (whew! we're almost to the end!) I will close with some
pictures of a recent play date for Owen. It was actually a couple of
weeks ago, but I'm just catching up to those pictures now. You may remember
from past history that there is another little boy with hydrocephalus that
lives nearby us. His name is Elijah and I met his Mom, Jen, while she
was pregnant with him. Jen and I have gotten to be friends in the last
year and we have gotten together more times that we have posted pictures
here, but we hadn't managed a play date for the boys since last May
because of Owen's surgeries this summer. So we got together to
get Eli and his big brother Spencer in the pool for one of the last days
of summer. The last picture that I had of Owen and Eli was this one:
Both boys have grown quite a bit since then, and apparently
Owen finds Eli to be quite tasty! Check out how they look now:
Wow! That was a long one! But I think I am all caught up on the news now.
Owen's first speech therapy session with the cochlear implant turned
on is on Friday, and we turn him up to the last program that we
have tomorrow. We'll go back down for a new set of programs next
Friday. I'll keep you posted as to how we're doing.
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