CI for son...CI friendly only please

Greema, Sorry for the delay in responding, I was out of town in Arizona.
Just to clarify something about the CI in water and other parents. When we were at the birthday party with alot of other deaf families, Lilly was the only kid there with a Freedom CI. The Freedom is the only CI that can get wet. That is why the other parents freaked out when they saw Lilly wearing her CI. Because they had not seen a Freedom, they assumed it was like all of the others and didnt know it could get wet.
 
Lillys dad said:
Greema, Sorry for the delay in responding, I was out of town in Arizona.
Just to clarify something about the CI in water and other parents. When we were at the birthday party with alot of other deaf families, Lilly was the only kid there with a Freedom CI. The Freedom is the only CI that can get wet. That is why the other parents freaked out when they saw Lilly wearing her CI. Because they had not seen a Freedom, they assumed it was like all of the others and didnt know it could get wet.
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Er...the Freedom is water resistance not waterproof. So, be careful around water anyway. ;)

I'm one of those easy to sweat types and I gotta to keep an handle on that as it can still get in the microphone and battery compartment area. I had that happen several times. Very annoying too. Fortunately, I have the dry & store for it. Right now, I'm having trouble with the battery compartment and it may be that I need to replace the battery holder slide-in-piece as I suspect the rubber ring may not be working too well anymore. The microphone cover area still seems to be pretty good and I don't have much trouble with that.
 
Sr71, Please do not mistake this as being argumentative, but I reread my post that you copied and I never said it was water proof. In fact I clearly stated that you are not to submerge it. I have gotten it wet a few times and had no problems. As far as the battery area, she is still using the body worn battery pack. That had an o-ring around it like the other parts of the freedom.
I do hve a question for you, being as you are an adult with the freedom. When the microphone and battery area got moisture/water in it, how did you know there was a problem? I sometimes think to myself that if there was a performance issue like that, there may not be a trouble code to tell me, seeing as Lilly doesnt have the capability of telling me something like that?
 
Lillys dad said:
Sr71, Please do not mistake this as being argumentative, but I reread my post that you copied and I never said it was water proof. In fact I clearly stated that you are not to submerge it. I have gotten it wet a few times and had no problems. As far as the battery area, she is still using the body worn battery pack. That had an o-ring around it like the other parts of the freedom.
I do hve a question for you, being as you are an adult with the freedom. When the microphone and battery area got moisture/water in it, how did you know there was a problem? I sometimes think to myself that if there was a performance issue like that, there may not be a trouble code to tell me, seeing as Lilly doesnt have the capability of telling me something like that?
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Sorry about that...I didn't mean to imply that you stated it was waterproof. It just some people can take statement about being "wet" and think it is...in any case we are cool.

To answer your question... I noticed that when there is moisture around the microphone area things get distorted/crackling/hissing sounding. When that happens, off it goes and a quick check to see what is going on. Typically, it will get a quick drying job (q-tip and tissue) and later into the dry and store. What you can do is to take the microphone part and check for moisture but removing the protector. If you see some, then there is possibly a performance issue.

In the case of the battery area, I think it has a detremental effect on the batteries themselves and shortens their life. I just dry it and see how moist it was before deciding the next step. Since this area is not near the processor and/or microphone, I don't always plop in the dry and store until I go to bed. If moisture does shorten battery life, then you will find out eventually with the message on the led screen.
 
Lillys dad said:
When the microphone and battery area got moisture/water in it, how did you know there was a problem? I sometimes think to myself that if there was a performance issue like that, there may not be a trouble code to tell me, seeing as Lilly doesnt have the capability of telling me something like that?
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My understanding from my audi is the earbuds that come with the kit are basically so the parents can check the mics. They can't hear the same thing as the child but they can check the mics. It's the reason she said if I didn't think I needed the earbud attachment they have a children's program that takes donations like that, to help parents who need that type of accessory because they either didn't get one or the one they had failed or got lost or so they have one to send to their childs school.

I have been looking for some type of cover for my freedom, kinda thinking if I got something to fit over it I could glue that to a barret, put the processor into the thing and put the processor up on my head some of the time. :) Still looking but I did find these Hearing Aid Accessories scroll down to the moiture seals, not sure if they'd fit on a CI but they'd probably be pretty good for HA's then the kids wouldn't have to worry quite so much. :)

there was another one somewhere I'll post the link when and if i ever locate it. :) It was really neat and came in cool colors and did have a size that fit CI's. That was more of a spandex type of thing I think.....can't remember...
 
Thanks Jag! I dont think anyhtign like that would be necessary for Lilly right now, but it does seem like a good product.

SR, I do use the acessory microphone occasionally, I am just overly worried (for nothing I guess). I just worry about thinkg that she may not be able to tell me. But once I start thinking about it, I realize that I am getting worked over abou tnothin really. I do what Im supposed to do in terms of maintainance and checks. Besides, as much, and as clear as Lilly is talking now, if the microphones are screwed up, I think I would hear it in her speech.
But just to reassure myself, I will check the mics tonight.
 
That is great. If my daughter gets the surgery she will probably be around the same age as Isaac. I made an appointment to meet with an implant center on September 13th. That will be our first official meeting to discuss the implant.


Isaacsmom said:
We met with the surgeon today and Isaac's surgery date of September 25 is definate now. We have chosen the Nucleus Freedom. We will be getting the blue color. We are so excited!
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jag said:
............
I have been looking for some type of cover for my freedom..
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With Lotte, when near the water, we would but cut-off fingers of latex gloves over the BTE. They are cheap, and will seal off around the BTE real well.
 
2kids1hoh said:
That is great. If my daughter gets the surgery she will probably be around the same age as Isaac. I made an appointment to meet with an implant center on September 13th. That will be our first official meeting to discuss the implant.
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Awesome! Which implant center are you going to? If they don't totally impress you, you can go to another place. We took Isaac to the Reading, PA hospital first and everyone was nice.....but they don't do that many implants and even fewer are on children. We then went to CHOP (Children's Hospital of Philly) and were very happy with the program there. They only do implants on kids and were very helpful. Just FYI. I prefer to deal with a children's hospital because they specialize in kids. The surgeons have done lots of kids and are used to working on smaller people. That is the primary reason we are going there. We are so excited for his upcoming surgery but also nervous. It is going to be such an amazing journey! I just know it.
 
I am learning a lot of new things on here and I am sure Fragmenter is picking up ideas and hints for his son. As a matter of fact, after his son's surgery he was taken to the children's hospital portion for an overnight stay. Very good suggestion as to having newly implanted children placed in children's hospitals!
 
Isaacsmom said:
Awesome! Which implant center are you going to? If they don't totally impress you, you can go to another place. We took Isaac to the Reading, PA hospital first and everyone was nice.....but they don't do that many implants and even fewer are on children. We then went to CHOP (Children's Hospital of Philly) and were very happy with the program there. They only do implants on kids and were very helpful. Just FYI. I prefer to deal with a children's hospital because they specialize in kids. The surgeons have done lots of kids and are used to working on smaller people. That is the primary reason we are going there. We are so excited for his upcoming surgery but also nervous. It is going to be such an amazing journey! I just know it.
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We are going to the NYU Implant center in Manhattan. They do so many implants on children and I have heard a lot of good things about them. I also heard great things about New York Eye and Ear too... it was hard to choose which to go to first. A couple of professionals suggested I see both centers, so we may do that. I know Fragmenter's son stayed overnight, will your son? I didn't think they made patients stay overnight, but I think I would feel more comfortable if my daughter did stay overnight.

I am excited for you guys, I can't wait to hear all the news. Good luck!!
 
As far as I know, it is normal for the child to stay overnight. When Lilly was implanted, they didnt even offer to let her go home. They keep them there overnight to keep an eye on them. The day of the surgery, they have them on some pretty strong pain medication. This is one of the main reasons, they also want to watch the kid and change the dressing the following morning. The next morning, the surgeon, the anastesiologist and her peditrician stopped in to check on her. They do not want to just implant them and puit them out the door. The surgery is realitively simple, but it is envasive. They ensure the kid is doin dok before they go home.
I would suggest visiting both centers. We went with St.Louis Childrens Hospital only because they are work very closely with my daughters audi staff. Since they work so closely as a "team" it was the only option.
If you dont have any ties with a specific hospital or team, I would say check them all out. You can get a feel for a place and decide to use or not to use them. Like anything else in the process, do your homework. Reasearch everything even the doctors history. Nothing is taken for granted when you are dealing with your children.
 
Lillys dad said:
As far as I know, it is normal for the child to stay overnight. When Lilly was implanted, they didnt even offer to let her go home. They keep them there overnight to keep an eye on them. The day of the surgery, they have them on some pretty strong pain medication. This is one of the main reasons, they also want to watch the kid and change the dressing the following morning. The next morning, the surgeon, the anastesiologist and her peditrician stopped in to check on her. They do not want to just implant them and puit them out the door. The surgery is realitively simple, but it is envasive. They ensure the kid is doin dok before they go home.
I would suggest visiting both centers. We went with St.Louis Childrens Hospital only because they are work very closely with my daughters audi staff. Since they work so closely as a "team" it was the only option.
If you dont have any ties with a specific hospital or team, I would say check them all out. You can get a feel for a place and decide to use or not to use them. Like anything else in the process, do your homework. Reasearch everything even the doctors history. Nothing is taken for granted when you are dealing with your children.
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Thanks for the advice. I like getting advice from parents who have been through this. I have started researching the implant centers and doctors already but I will definelty do more once I meet them.

I read your daughter had some bruising after, was she in a lot of pain? How old was she when she was implanted?

Thanks
 
2kids1hoh,

We're excited for your daughter and you can ask any one of us parents of implanted children specific questions and I'm sure none of us will hesitate to answer you! Even if it's a personal question.

Dr. Jones (here) operated on my son at University of Kentucky and I was really pleased with how they handled our son and family members. UK Children's Hospital was AWESOME to stay at. I've heard of people travelling across state lines because they wanted a specific doctor. Fortunately, we have a brother in law who is a doctor and he's had nothing but wonderful things to say about Dr. Jones and he said he was one of the best so we went local.

Anyway, your daughter is still an infant so you guys have tons of sand in the top part of the hourglass to do your research. All the best of luck to your family!
 
She didn't seem to be in too much pain at all. The day of the surgery, they had her pretty drugged up. If I remember correctly, they had her on morphine. Dont hold me to that I'm not 100% sure about which medication they had her on. In the morning follwing the surgery, thye switched her to childrens tylenol and she stayed on that for (I think) a week, maybe two.
She didnt seem to be in pain, the swelling went down in the 2 or 3 days follwing the surgery.

The thing you need to be more worried about is infection and illness for the 30 days followin surgery. The ENT doc told us that it was very, very important, that at the first sign of any illness, call him. About a week after the surgery, I noticed Lilly has a very insignifigant runny nose. I called him and he immediately put her on some serious antibiotics.
I think he did this to prevent her white blood cells from building up and trying to attack the CI.
One rumor that had some root in fact is the increased risk of Minengitus. People say that for the rest of the childs life they are at high risk of getting it. In reality, the CI patient is at an increased risk for a few months follwing the surgery. Beyond that, the risk drops down to a fraction of a percent higher than anyone else. This is still in the back of my head when Lilly gets sick. The symptoms are very hard to read. They are only a high fever and a sore neck.

As Frag said, do not hesitate to contact any of us parents that have gone through the same thing. I also cannot imagine anything being to personal to openly discuss. If the question is to personal, I will PM you with the answer.
 
Surgery.

With our daughter, the surgery went smooth.
She was operated on a monday. On two sides at the same time. That took about 3 to 4 hours.

When we saw her again, she was in the recovery-department (don't know the correct term) and was coming by really quickly. Normally theywould have observed her there for a couple of hours, but when she started reading, and chatting, it was too noisy for other patients and she was moved to the ward.

There, she became annoyed by the IV in her foot (fluids) and started to feel a bit ill, but after 1 x throwing up, and 1 asperine, she was fine. Taking the IV out really upped her spirits.

Within 4 hours from coming out of the anestesia (sp?) she was on a tricycle driving around. (with two parents behind her preventing her to bump into things.... must have been a funny sight....)

This was all on monday, the same day as the operation. They insisted that we would stay until wednesday morning, and in a hospital with a child that wants to play.... that's a long time.
There were no bandages on her head. Just some tape. She had some bleeding from her nose, due to damage in the inner ear, coming out via the nose. Looked terrible but she never noticed; she never felt it.
Obviously the sides of her head were swollen. This took a while to subdue, but again, she never noticed.

In all, the only painkiller she ever got was an asprine on the same day as the operation. I would expect this to be exceptionnel.

Even though everything went fine with us, different children, different hospitals and different teams will result in different outcomes.
And like with a child being born, the worries and concerns are quickly forgotten. There's an exiting trip ahead!

Here are some pictures from after the operation.
 
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Cloggy: "Even though everything went fine with us, different children, different hospitals and different teams will result in different outcomes.
And like with a child being born, the worries and concerns are quickly forgotten. There's an exciting trip ahead!"

This makes a great quote!

Lillys dad: "As Frag said, do not hesitate to contact any of us parents that have gone through the same thing. I also cannot imagine anything being too personal to openly discuss. If the question is too personal, I will PM you with the answer."

Great advice for you newbie parents considering CIs for their children.

Hmmm, there are a few parents on here that are standing by and willing to share their experiences -- this is a very good trend. I am noticing a huge difference under the CI/HA group from when I first joined up last May and now! Much less bickering and arguing! It's getting to be very nice reading the posts on here -- :grouphug:
 
Then again, in that "bickering" period, a lot was learned!

When looking though all that stuff, the real messages get through.

But I agree.. this quit period is very nice.:grouphug:
 
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