OK, I don't have a lot of time for an update today, but an update is overdue.
So, on the cochlear implant front we're in a yes, maybe status. The MRI showed
that Owen's left ear has no visible auditory nerve and the cochlea is rather misshapen.
The good news is that the MRI showed a good auditory nerve on the right side and a better
shaped cochlea. The bad news is that Owen's shunt is on the right side. Owen's shunt is
programmable and therefore cannot be right next to a cochlear implant because the implant
has a magnet in it.
So the next step was to see if it would be possible to swap out the programmable shunt with
a fixed one and have both devices on the same side. Swapping out a shunt wouldn't be too
bad because his pressure has been stable since he was a month old. The possibility of
moving the shunt to the opposite side of the head is something we would rather not do.
If you follow the link on the menu for Shunts you'll see that a shunt has two catheters attached
to it. To move the shunt to the opposite side of the head would mean moving both of those
catheters. One of the catheters is actually inserted through the brain into his ventricle.
Moving that is a fairly risky procedure and we aren't certain whether or not we
would be willing to do it.
The cochlear implant surgeon (Dr. Buchman at UNC-Chapel Hill) and the neurosurgeon (Dr. Grant)
have spent the last few days emailing back and forth and think that there is a decent
possibility that the devices can co-exist on the same side of the head. Right now we are
scheduled to go down next Thursday for a checkup with Dr. Grant to see if he thinks he
can move the shunt over just a bit so that everything can be on the right side. If he
thinks it is doable then he will have the surgery on Friday.
If all of that happens then we'll wait about 6 weeks to make sure that he has healed and that
he is tolerating the new valve. After that he would be ready to get the cochlear implant.
***Note on 5/11/2008 - We have finalized our plans for this trip. We will be heading down
on Wednesday evening. Dr. Buchman has arranged for us to meet with him first thing on Thursday
morning. He is going to mark out where the cochlear implant would need to be and give us
some templates to take to our appointment with Dr. Grant at 10:00 that morning. We'll make
the decision then as to whether or not to proceed with revising the shunt. ***
In other news Owen has continued to do well with his signing. He can now sign "eat", "drink",
"cookie", "more", "sleepy" and "up" (to be picked up). He will also do Mommy and Daddy from time to
time, but he usually just uses up and sometimes we will see the "all done" sign.
His continued progress in signing is just awesome and
we couldn't be happier with how that is going. I know that we aren't supposed to focus on signing
if he is going to get a cochlear implant, but it will be months and months before he can get
the implant and just how is he supposed to communicate with us until then? And even after
he gets the implant it's going to be a long time before he can really speak and understand speech,
so we want him to at least be able to tell us he is hungry or thirsty or lonely while this
whole process unfolds.
And our last bit of news is that Owen went to school for the first time today! Owen does
not have a lot of contact with other kids and we have been worried about his social skills.
His sister goes to a Montessori school and I teach there every now and then when I have time.
The directress and toddler room teacher were kind enough to let us bring Owen in to hang out
with the other kids. Unfortunately we won't be able to go back next week because we won't want
to risk him catching a cold before surgery, but it was great seeing him there with the other kids.
The teachers chose songs that all had hand movements that the kids knew and it was great to
see Owen waving his hands with the other kids. He played with some of the materials in the classroom,
had a snack with the other kids, and then we headed home. It was a great morning, and I will close
with a picture of Owen sitting in his chair at the snack table.
Progress - June 2, 2008
Has it really been almost a month since my last update? Where does the time go?
This last month has been crazy but good. I guess the first thing to do would be
to update the cochlear implant situation. On May 15th we started out our day
bright and early with a meeting with Dr. Buchman to see what he thought about
there being enough room for
the cochlear implant (CI) and a fixed shunt to coexist on the same side of Owen's
head. He took a silicone template of the CI and laid it on Owen's head and
realized that there was plenty of room to put the CI and the shunt on the same
side. Below is a picture of the internal piece of a Cochlear Freedom implant.
The silicone template looked just like this, but the magnet in the round part and
the electronics in the bottom part were missing.
In the bottom part where the electronics are, there was just a hole. Dr. Buchman
placed the hole where it needed to be implanted on the side of Owen's head, poked
the marker through and made a dot. He said that as long as the hole was right
where he put the mark, we could rotate the upper round part of the implant
wherever it needed to be to get away from the shunt. There was plenty of
room to keep it completely away from the shunt.
Next we went to meet with Dr. Grant, Owen's neurosurgeon. When he saw the placement
of the template he agreed that there was plenty of room for both devices on the
same side. This was a relief. We had already pretty much decided that we would not
take the risk of moving the shunt to the opposite side, and Dr. Grant said that
if that had been necessary, he was going to try and talk us out of it. Thankfully though
it turned out that we could just swap out the programmable shunt for a fixed one
and we all agreed that this lower risk option was worth a try. They scheduled him
for surgery the next morning.
The surgery went fine. The folks in the OR at Duke Children's Hospital are great.
Dr. Grant always tells us how long to expect the surgery to last. However that has
little to do with how long it will be before he comes out and tells you that he is
finished. It can take 45 minutes sometimes for them to prep Owen because they
need to completely clean his skin, put the drapes over him and all of that to
make sure that everything is sterile. As such you could really panic when Dr. Grant
tells you the surgery should take 45 minutes and you don't hear from him for 2 hours.
So they do the really nice thing of telling you in the waiting room when the surgeon
actually walks into the OR. That way you know how much longer you really have to wait.
In our case it was only a half an hour between when they said Dr. Grant went in to the OR
and when they came out and said we needed to head to the consult room because he was all
done. Dr. Grant said everything went really well. It was also comforting to hear that
the catheters were running clear and there didn't appear to be any protein buildup on
them. We went home the next day because all seemed well.
A few hours after we came home Owen ran up a temperature of 101.6 and I, of course,
got on the phone and sent an email to Dr. Grant. Dr. Grant wasn't on call that day,
but he did answer my email and said that it is normal to run a temperature for the
first 48 hours after surgery, but to call back if it stayed up longer than that.
I also talked to the Resident who was on call, and who happened to be the
assistant during Owen's surgery, and he also said that we should wait and see
until the next day. By the next morning the temperature was gone, but we noticed
that there appeared to be some drainage on one of the bandages.
The on call guy (it was Sunday) said that I should just
change the bandage and if I saw anything more on it the next day I should bring
Owen back down to Duke to be checked out. So I changed the bandage and waited until the
next day. When we woke up the bandage was soaked through again.
Now this part will make every Mom or Dad who has ever called in a false alarm feel
good about themselves. I put Owen in the
car and headed for North Carolina. It was a Monday, so no one was in clinic that
day so there wasn't anyone to look at the incisions in the office. Dr. Grant told
me to head for the ER and one of the neurosurgeons would come down and take a look.
We thought maybe he needed some more glue on the incision. The shunt seemed to be
working fine and there wasn't any sign of infection, it was a preventative visit.
Unfortunately when we got to the ER Dr. Grant was in a meeting. The pediatrician in
the ER saw that the bandage was soaked again and she called the Resident neurosurgeon.
He was in surgery, so he just reacted to the fact that there was a patient in the ER
saying something was wrong with the shunt. He ordered a shunt series, a CT scan,
bloodwork and the kitchen sink. While he was in the OR we got the shunt series
done and blood drawn for a full blood count.
Finally the Resident finished up in the OR and headed down to the ER. The bandage had
been taken off the incisions (there were two, one at the top and one at the bottom of
the shunt) so that he could see them. He looked at the incisions and said "they look
fine, what's the problem?". I explained that the bandages kept soaking through with
clear liquid and the pediatrician, who was also there, confirmed that they were
"so wet I could have wrung them out" when we got there. So he poked at the incisions,
squeezed at them, and generally tortured them to see if he could get anything to come
out. Nothing. He asked if I had seen anything oozing out and I told him that no, I
had never actually seen anything come out, I just saw the wet bandages. He tried
squeezing at the incisions again. Nothing. He looked at me and said, "Do you think
the shunt is failing?" I said "No, I just came to the ER because no one was in clinic today.
Owen is in a great mood, has been eating like a horse and his soft spot is behaving
as it should."
And here is the moment. That moment when you are both relieved and mortified.
The Resident looked at me and said, "Mrs. Higgins, I believe that your son
has been sweating underneath the Tegaderm." Tegaderm is the clear plastic stuff that
they put over the gauze to keep the kids from pulling off the gauze. It doesn't
breath well. And it has been warm here in the South. He canceled the CT scan
and put a new bandage over the incisions. Now of course he gave me the whole
"better safe than sorry" speech and assured me that it was no problem at all
for them to look at it. I still felt pretty sheepish. We headed back
to the hotel and then drove home the next morning.
Once the shunt surgery had been done successfully, we were able to get Owen on the
schedule for the cochlear implant surgery. He needs at least six weeks to
fully heal from the shunt surgery, so the soonest that he could get the CI would
be the beginning of July. Unfortunately Dr. Buchman's schedule is much further out
than that. Currently Owen is scheduled to get his implant on August 13th. It's a
long wait, but at least we'll get the summer in the pool first.
So other than that the shunt is doing fine. Owen has actually been in a great mood
since he got the new shunt and he has made some incredible leaps in his motor skills.
The pressure on the new shunt is slightly higher than his programmable was set to,
but not enough (only 10 mm H20) to make any difference. So maybe he was just ready
to make these leaps, but either way the new shunt seems to be agreeing with him.
Below are pictures of Owen in his Bumbo seat that I took today. Yesterday he sat
for 10 minutes, completely upright in his seat without me touching him. I tried
draping a white blanket over the edge of the couch so that you could see Owen better,
but it kept falling down, so it looks more like I just didn't clean up before I took
the picture. That doesn't really matter though, they are still stellar pictures of
some awesome progress.
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