July ABI mapping ...and some explaining.

 

July- ABI mapping visit.

 

 Ok so here is how mapping works...

 

An ABI has many components

1 part is the mesh piece that is placed on the brain stem.

It kind of looks like the box below,

it has 20 circles like the ones you see here.

 

Each circle is split in two, and

there is an electrode on each side.

 

It is very tiny, not as big as what you see here.

 

During surgery they try to place the mesh on the part of the

brainstem that provides hearing. There is a test they

do during surgery to tell them they are in the

right spot or close.

 

So this mesh piece has a wire or wires that come

out of the brainstem and goes out to the outside

and attaches to the other part attached to the skull under the skin.

 

Then the exterior component is attached via the magnet under his skin.

It is hooked to the computer and the Audiologist sends electrical

pulse down to the brainstem and see how Chad reacts. 

Sometimes the pulse makes his elbow feel weird, some times

it makes him feel like fainting, sometimes he feels it in his throat.

 

The goal by the way is to "hear" something. In January when we spent

two days mapping he heard nothing. This time he heard 5 tones, however

they were accompanied by a physical reaction. He can't hear a tone

and have a physical reaction at the same time. The team

was able to after 5 hours to get a tone with out a reaction.

We "get" to go back in September for more mapping before they actually

hook him up and let him walk away.

 

He is playing a game

on his ipod and his Audiologist introduced

him to another one on her ipod.

 

Did I mention is was a VERY LONG PROCESS?

 

 

 

April-May-June and a humbling bus ride.

Well time flies when you start another new job.

 

I started another new job at the beginning of April, it is pretty intense but

I really like it. I am selling Commercial, Auto, Home and Life Insurance.

 

The past three months have consisted of Chad having a girlfriend and

breaking up with her. We loved her. :(

His headaches are better kind of.

We are in the process of getting him signed up for College.

 

We hope his head will let him go, he will be taking sign language and another class.

This will be good so he can get better at sign language.

 

 

Last week I was riding the bus to work and a deaf lady got on the bus.

She ran her bus pass through the reader.

It didn't ding which is what happens

when the pass is accepted by the reader.

 

The bus driver tried to get her attention but she did not hear him, another

passenger got her attention and she walked back up and ran her

card through the reader again.

 Then she sat down and her friend said she couldn't see the

streets where she was sitting I know this because I can read some sign language.

So she moved and then when it was their stop they got off the bus.

I realized that unlike most others if your deaf you can't

hear the bus driver call out the street names.

 

I was humbled by this experience.

My life is and has always been easy. I have no right

to complain.

 



March.... Please Spring hurry up!

Hello friends,

I have not blogged in a month because 

I started a new job and there simply is 

not enough time in the day.

Here is an update:

Chad is having LOTS of very bad headaches.

They make it difficult to function like a normal person.

To add to his difficulties he has been having lots of chest pain.

So we had to add a new doctor... a Cardiologist

This brings our health care professional count to 15.

Chad's chest pain is due to 

Pleurisy: Here is the WEBMD definition of what Pleurisy is:

Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura)

 covering the lungs and the chest wall.

Prescription strength Aleve for 10 days.

No new info on the ABI we have not heard from them in 2 months.

We are changing his neurologist to one in our area

so we can figure out how to have less headaches.

Blake is good. Eric is good, I am crazy busy learning my new job.

Hope you are well... I am ready for sunshine and SPRING!

 

February update...

 

Well It's Valentines week.

We have been busy around here.

 

Chad is doing pretty good this week.

We have not heard from the ABI Team since last month

when we were there. So we do not know when we will be going back.

 

Chad went and played laser tag last night and

3 days ago he got a hearing aid. The hearing aid will

be very helpful for him as he continues to lose his hearing.

 

We don't know how long it will take, it could take 3 months or

5+ years. We obviously hope it takes FOREVER!

 That would work out the best for me (and him).

 

So in the last month Chad has been healing still, I think it

takes 2 months to recover from brain surgery.

 

He is having some side effects from his medicine.

He is having chest pain so they asked him to stop one

of the meds and referred us to a Cardiologist.

 

Yes... We get to add another doctor to our TEAM!

 

I started my job a week and a half ago.

Blake finished wrestling and Eric is doing the same thing.

 

 

I am laming on the pictures. I will try to get some up soon.

 

Happy Valentines week!

 

 



Not the best news... and that thing I wouldn't tell you.

Hi to all my readers...

 

Here is what I didn't want to tell you till it was over.

(because it FREAKED ME OUT!!!)

 

Well about 6 weeks ago we went to Chad's pre-op

appointment and the ABI "team" said that when we

turn on the ABI they would have a nurse, Dr. and a crash cart.

 

I wish you could have seen my face! It said "EEEK! DON'T TELL ME THAT!"

 

I was alone with her and later that day Chad's doctor told him the same thing.

But... Chad does not hear well so he didn't hear it. (Thank goodness!)

 

I did not mention it to him.

 

So... We spent the last two days 3 hrs each day.

 

 

 (I tried to post pictures but something is wrong with the website.)

Well anyway... Wed they had a crash cart in the room and Chad
was curious about it. Then Thursday they got a different
crash cart in the room and they hooked him up
he asked "why am I hooked up to this AED?"
They said... just in case your heart stops.

He said "no seriously why?"

They said in case your heart stops... He then got nervous.

We went on and did the programing. 2 days... 3 hrs each day.
Exhausting...

There are 20 electrodes on the ABI and they turn each one on by
sending in a current and seeing how Chad reacts, what he feels etc.

He mostly began to feel faint as they got to a certain level.
So they would send in a current and then increase it
 and increase it and increase it
until he felt something. Usually he felt like he was going to faint.

Occasionally he felt something in his ear, or throat or at times elbow.

But the bad news is.. No sounds. :(

So the people from Cochlear and the Audiologist both are
going to do some research and we will go back.

We got home very late.

Then today we took him to get fitted for a hearing aid.
He was not happy about going to the doctor again.

That is our update. Thanks for reading! 

 



4 More days...till we turn it on!

An ABI must be turned on.

 

It is going to take 2 appointments on

 2 different days...

 

Why?

 

Apparently it is exhausting to do.

 

We turn Chad's on this coming Wednesday.

I am still not going to tell you the scary

 part until we get back. 

(When it is over!)

 

Last week we also took him to get fitted

for a hearing aid. His doctor wants him to have one.

 

Do you know how much those things cost? 

Actually they are CHEAP compared to and ABI.

 

So 4 more days...