Bilateral Same Day Surgery

ashleysmommy

ashleysmommy

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My daughter is scheduled for bilatral same day surgery in March. Any one have any advice for us to prepare for the big day. She is 16 months old and has had profound loss in both ears from birth. She was a 25 week preemie.She weighed only 15 ounces at birth.
 
Ashley,

Here's wishing you all the best for your daughter's simutaneous bilateral surgery! If you have any questions from the perspective of an adult bilateral CI user, please feel free to send me a PM anytime! :)

You might want to consider joining cicircle -- an e-mail list for parents of children who have received CIs.

To subscribe, send a blank message to:

subscribe-cicircle@yahoogroups.com
 
Welcome to AD! This is a great site for info. The above link is awesome! There are alot of things that you would probably not consider since the little ones cannot really tell us what is wrong and what hurts.
Lilly was implanted in sept 05. She is getting her bilat CI this coming wed. If I knew then, what I know now, I would have gone ahead and done both ears at once.
The day of surgery will be one of the longest days of your life. After the surgery, Lilly was very groggy and out of it, due to the meds. The next morning, she woke up in a happy, very playful mood. It is amazing how fast they recover after surgery.
If you have any questions, please do not heasitste to ask. There are alot of us here that you can lean on when ya need it. If you have questions that you do not want to post publicly, do not hesitate to send a private message to me, or any other parent here that have stood in your shoes. We are all very eager to help others.

Again, welcome.
JB
 
greema said:
Um, Highlands, I'm hoping you meant threaD, not threaT? :giggle:

And I wish the best for Ashley's bilat surgery in March (my grandson got his first implant last summer and is scheduled for 2nd one next month).
Click to expand...

:lol: I meant threaD of course..
 
Thanks to all that have sent a reply to my call for help. You guys are great.The info was very helpful. I am sure I will have more questions so thanks again for the support.
 
Hi Ashelysmommy,
I wish you luck on your daughter's bilateral operation.
 
LOL, just answered your question on Ci-circle.!!

Welcome to AllDeaf. You'll get lot's of info here..

Cloggy
 
Any one have any advice for us to prepare for the big day. She is 16 months old and has had profound loss in both ears from birth. She was a 25 week preemie
Click to expand...
Well my best advice is to have realistic expectations. See the CI as something for which everything is possible, but nothing is promised.
It's just so hard to tell how good of a CI user someone will be. Like she might be able to have some speech/enviormental sound perception, but she also might be functionally hoh. Hard to tell.........
Does your daughter have delays related to her prematurity? Not sure if there have been studies on how well preemie kids do with CIs. As you probaly know, this is a group that tends to have significent delays.
Oh, and congrats...............
 
greema said:
head-desk head-desk head-desk
Click to expand...

:giggle:

Not *all* premature infants have delays. I was born prematurely (25 weeks), weighed 2 pounds at birth and suffered no ill consequences intellectually because of it. In fact, I was able to participate in honors courses during high school and won a college scholarship as part of an all-district writing contest. (Stepping off my soapbox).

While no one can determine how well your daughter will function with a CI, her chances for success are excellent given the fact that she will be implanted at a very early age. Early implantation allows many children to function as a "hearing child" without experiencing language delays.

Children who are implanted at a later age (12 years or older) are the ones who tend to have more difficulty adjusting to the CI. However, this isn't true for all cases -- especially if a child has had some degree of residual hearing before implantation.

By the way, compared to your daughter's profound loss, having the ability to function as if she were hard of hearing would be *much* better than what she is able to hear right now. :) Some children who function as if they are hard of hearing may demonstrate difficulty hearing in noise or from a distance, but this can easily be addressed with the use of an FM or soundfield system.
 
She has some delays. She was in the hospital for the first 4 months of life. She had a rough road to get home. She is catching up daily with therapy help. She gets OT, PT, Speech, and Vision services already. She is a busy girl. I know when she gets her implants she will just blossom. Again thanks for all of the input. It has been a great help. Good luck to all with up coming surgeries too.
 
Ashleysmommy,

The fact that your daughter is receiving early intervention services from the specialists you mentioned is a definite plus. I also spent 4 months in the hospital as a preemie, but did not receive the kind of early intervention your daughter is currently receiving (with the exception of a specialist who worked with blind children). At the time, doctors simply did not know if my intellectual, speech and language development would be negatively affected by my prematurity. Here's wishing you all the best for your daughter's upcoming surgery. I'm sure her bilateral CIs will make all the difference in her development. :)
 
deafdyke said:
Well my best advice is to have realistic expectations. See the CI as something for which everything is possible, but nothing is promised.
It's just so hard to tell how good of a CI user someone will be. Like she might be able to have some speech/enviormental sound perception, but she also might be functionally hoh. Hard to tell.........
Does your daughter have delays related to her prematurity? Not sure if there have been studies on how well preemie kids do with CIs. As you probaly know, this is a group that tends to have significent delays.
Oh, and congrats...............
Click to expand...

Is it SO hard for you to be optimistic? You know, sometimes I feel like you're bringing us down with the crap you keep saying. :eek3:
 
HearAgain/greema while a lot of implantees get a lot of hearing, there are still some that get not so much hearing. Even over at Hearing Exchange, they admit that results vary widely. There are still some kids who actually NEED TC. Why is my saying that causing greema to pound her head against the desk? I'm very moderate about this.........I'm no Lady Duke or Sourmind.
But saying that all early implanted kids will be functionally hoh, is like saying that all kids who got hearing aids early will be functionally hoh. You have to admit that hearing abilty varies significently from person to person.


Oh that's true that not all preemies end up having developmental issues. I was just saying that b/c she's a preemie, she's at high risk for developmental issues. I was a wee bit early too. (three weeks) I dont have any issues directly attribuated to my prematurity (all of my issues are related to my syndrome)


She gets OT, PT, Speech, and Vision services already.
Click to expand...
Quick question.............are the speech and vision services being provided by teachers of the Deaf and teachers of the Blind? I have to say that I think that kids who have vision and hearing issues should ALWAYS get their Early Intevention specificly from teachers of the Blind and Teachers of the Deaf who are experianced and in some way affliated with the School for the Blind or the School for the Deaf.
 
DD,

Fair enough. I just wanted to emphasize that while it is true not all children who receive CIs function as if they are hard of hearing, a majority of them do.

In addition to your suggestions, I think it might be helpful for ashleysmommy to seek guidance from a specialist for the deafblind. That way, one person can address both disabilities instead of having a teacher of the deaf and a teacher of the blind consult with each other (although the latter would certainly be preferable if the former can't be arranged).

Ashleysmommy: If you are interested in learning more about deafblind resources in your area, please feel free to send me a PM. I co-facilitate a weekly support group for the deafblind and have all kinds of national resources that you might find helpful.
 
DD, We (parents of CI children) are quite aware of the same things you repeat over and over. A new member comes here after making the decision to have the CI for their child, asking for advice on how to prepare for the surgery day, and you cannot help but to push your opinion down her throat. She did not ask about weighing the pros and cons of CI in kids. She was not asking about success rates, or % of hearing increase after implantation did she? NO. She was asking about the surgery date. It is quite obvious that her mind is made up, so why do you bring this up? Do you think that anyone whos mind is made up, will suddenly change their mind, or decide to put the surgery on hold because of what you type?
I do agree with some of the stuff you post in the CI/HA forum here, but please, refrain from giving your opinion about stuff when it is not only unsolicited, but also off topic. Have you ever had to prepare your child, and yourself for your childs CI surgery? To the best of my knowledge, you done have any kidws with a CI do you? Then how can you comment on the topic of preparing for your childs CI surgery day?
 
Ashleys mom,
Things to consider, bring a book. If you are a smoker, bring an extra pack. I quit smoking this past october, so this isnt on my list this time. But when Lilly had the surgery last time, I pretty much chain smoked the entire time.
Other things you may want to bring
If your daughter has any dvd favorites, bring it. It will help keep her distracted during the evening following the surgery. Bring her favorite teddy bear, keep it with her until they take her into surgery, and ensure the nursres knwo to giv eit back before she wakes up. Bring a list of phone #s to keep people updated throughout the entire ordeal. Bring $ for vending machines and hospital cafeteria. Bring a camera. If you dont want to take a pic of her after coming out of surgery, you will probably have to take a picture of her the next morning to prove to everyone that she woke up ready to play, liek nothing was wrong. This is common with kids. bring any comfort item that may help her and you, and your husband.
After surgery. refer to the link provided by hear again. It is full of great ideas. Earlier today, I went out and bought the button up/zip up shirts. I went mostly with zip up hooded sweatshirts. I also got alot of the first aid stuff. Talk to your dr about the use of over the counter pain meds for her.
No matter how prepared you are, you know you will still forget stuff. Hopefully, you dont live too far from the hospital so you can run home. Thi sbreings up other issues. DO you have pets? Who will look after them while you are gone? Food,water for them, letting the dog out? You may try to have a friend watch the family dog for a day or two so you wont have the dog tripping you and ashley up. Remember, there is a good chance she may have balance issues for a day or two. She probably should not have a dog in her way.

There are many little things to remember, think ahead.

As I said earlier, do not hesitate to contact me if you need anything.
 
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