Well surgery was 5 days ago.
I explained to Joshua he was getting a new hearing aid. We have talked about this for about 2 weeks maybe 4 times...didn't want to freak him out with an overload of information. I told him it was surgery (he does not know what that is). I told him we were going to the hospital, the doctor would give him medicine and he would go to sleep and showed him where they would put part of his new hearing aid. I told him when he wakes up I will be there. I told him his ear might hurt a little bit and that he can take medicine to feel better if it is hurting. I told him his hearing aid will look like Sam's (that is his friend from school). Each time I talked about the CI (which I refer to him with him as a hearing aid) he would say "no" "don't like it". That is tough...I can only hope that after he adjusts to it he will like it.
I had to go to the hospital with Joshua alone because Kiana had the flu. Kai was going to come but he had finals to take at school. I was scared. I prayed and prayed. Many people were praying and praying.
When they called us back I asked about walking him back into surgery...they said no. I was floored. My friend was able to walk her son back...same surgeon...odd. I told them that he would then need an ASL interpreter to explain what was going on. They were distressed with time and puzzled and then explained to me the medicine makes them so tired and out of it that he would not know what is going on. They gave him the medicine and he became very silly after about 10 minutes. He was sticking toy rabbit I gave him behind my ears under my hair. He was falling asleep. I changed him into his gown. I prayed for him several times. I could not gather my thoughts or words...I was panicking on the inside not able to pray the words, my mind could not grab one single thought to begin to pray...instead I prayed God you know God you know. They said okay lets go and started wheeling him away he tried to turn and look and reached up but then slumped down a bit...I wanted to yell wait and go into his rights to have an ASL interpreter....but 2 things stopped me...prolonging it even more (and it would just be another someone he didn't know trying to communicate with him) and me going could introduce more germs into the operating room. I had to pray and believe that he really would not know or care he was being wheeled back. Next surgery, if there is one, I may make a different choice. I feel pretty sick about all that.
After waiting awhile in the waiting room, and praying, and feeling pretty peaceful about it all, Elyse showed up. Thank God I had someone to wait with. After a long while we checked on his status and they said they were almost done. Shortly after that the surgeon Dr. Djajilian came out and said it went well. I asked if they were able to test the implant and he said no. He said something about it not being compatible with Windows 7...what? He said they did an xray instead to check placement. hmmmmmmm.......
I thought I would have talked to the surgeon again....but that was it...he was gone...onto the next CI surgery.
We were called back as he could be waking up soon. We were there just in time. He was moaning a bit, after a couple of minutes, and I asked about pain medicine. They said they have given him some. Once he woke up a little more we asked him if he was in pain and he said no. A couple minutes later we asked him again and he said yes. He got some morphine. Poor little guy had several needle marks and bruises on his hands, they ended up having to put the IV in his foot. He was fine with that most the time because he didn't know it was there. He was a little out of sorts, fading in and out. Eventually he told us he was hot....the sign for hot barely made it past his stomach but we understood and removed the blankets from his legs a bit. His head was wrapped up super snug. It was sad to look it...so many mixed emotions I have.
As we were getting ready to leave he sat up a bit and this made him very nauseous and he threw up a bit. The nurse gave him some medicine for that. He again became nausous getting in the wheelchair and then again in the car. I had to ride in the wheelchair and hold him, it felt so good to hold him again, what a beautiful moment.
Tuesday, February 7, 2012
Monday, January 30, 2012
How did we get here?
2 days away from Cochlear Implant surgery....how did we get here?
I was so dead set against it. I had heard the way deaf people viewed the CI. I had heard of how this surgery is brain surgery (by the way it is not brain surgery). I had seen Sound and Fury and this confirmed to me not to get the implant. The way the deaf community spoke about it and spoke about the people who had them. I was afraid that the community that would become my son's community would reject him. I did not want to make a decision for my son that would cause him to be rejected by the only people that speak the same language as him, ASL.
When we applied to adopt Joshua. I planned on us raising a child who used ASL as their form of communication. Turning him into a "hearing child" was not the plan...and it isn't the plan now either. A cochlear implant does not make a child hearing....I don't have the time and energy to go into all that right now.
After all the input and research I had done....I saw Sound and Fury 6 years later. Wow...this really opened my mind. I had so many issues with the first Sound and Fury....how the parents seemed selfish and uninformed and how the deaf community was so angry and selfish as to reject someone based on their communication choices and the grandmother pushing against her children and taunting the grand daughter with hearing...something her parents did not approve of. The remarks the grandmother made sounded like being deaf was a miserable existence...it was degrading. I believe there is a huge fear of the deaf community becoming smaller and smaller as parents opt for a CI and do not learn sign. It is a real threat. I believe the negative response given by the deaf community toward CI is a desire to survive and preserve who they are and what the community is to become.
The little girl in the movie was thrilled with her CI as were her parents and siblings and cousins, many of whom had also received the implant. Everyone who received the implant was happy that they had made that choice....the mother even wished she had chosen it for her daughter earlier. That told me I have to let him try to hear through the CI.
Whether Joshua was 100% deaf or could hear or talk was never important to me. I just wanted to be his mother. I just wanted him to be communicating. I never took into consideration (because of fear of the deaf community) what will be important to my son....until later.
One of the hardest parts of this decision is a persons brain loses the ability to process sound after not hearing sound....I am told this is at about 8 years old. You can't wait for the child to decide to have CI...it is too late then.
The words I played over and over when considering CI initially were him growing up and saying "how could you have done this .... why couldn't you have just let me be deaf and happy".....after the 6 years later I could hear him growing up and saying "why didn't you let me decide....why didn't you try".
If Joshua does not want to use his implants later in life, it will be his choice and I will support that. I hope that the benefits he receives from the implant will be important to his daily life and he will continue with it.
The children in his school that are deaf have CI. I had fears myself of...if I don't get him the CI where and who is his deaf community? His classmates are all speaking and hearing...not like a hearing person....but they are not signing like a deaf person either. I want him to freely live among both communities....and of course the hearing community.
I want him to easily communicate everywhere he goes in life.
What are my expectations?
I expect him to have awareness of sound.
What are my fears?
Things go wrong in surgery and he dies or has complications that leave him frustrated or unhappy....facial paralysis, tastes change, balance issues...these are all possibilties. As with any surgery then you have the risk of death....not even going to talk about this one....God did not bring him this far for him to die in surgery...so not even going to entertain that thought.
Praying for God to watch over him.
I was so dead set against it. I had heard the way deaf people viewed the CI. I had heard of how this surgery is brain surgery (by the way it is not brain surgery). I had seen Sound and Fury and this confirmed to me not to get the implant. The way the deaf community spoke about it and spoke about the people who had them. I was afraid that the community that would become my son's community would reject him. I did not want to make a decision for my son that would cause him to be rejected by the only people that speak the same language as him, ASL.
When we applied to adopt Joshua. I planned on us raising a child who used ASL as their form of communication. Turning him into a "hearing child" was not the plan...and it isn't the plan now either. A cochlear implant does not make a child hearing....I don't have the time and energy to go into all that right now.
After all the input and research I had done....I saw Sound and Fury 6 years later. Wow...this really opened my mind. I had so many issues with the first Sound and Fury....how the parents seemed selfish and uninformed and how the deaf community was so angry and selfish as to reject someone based on their communication choices and the grandmother pushing against her children and taunting the grand daughter with hearing...something her parents did not approve of. The remarks the grandmother made sounded like being deaf was a miserable existence...it was degrading. I believe there is a huge fear of the deaf community becoming smaller and smaller as parents opt for a CI and do not learn sign. It is a real threat. I believe the negative response given by the deaf community toward CI is a desire to survive and preserve who they are and what the community is to become.
The little girl in the movie was thrilled with her CI as were her parents and siblings and cousins, many of whom had also received the implant. Everyone who received the implant was happy that they had made that choice....the mother even wished she had chosen it for her daughter earlier. That told me I have to let him try to hear through the CI.
Whether Joshua was 100% deaf or could hear or talk was never important to me. I just wanted to be his mother. I just wanted him to be communicating. I never took into consideration (because of fear of the deaf community) what will be important to my son....until later.
One of the hardest parts of this decision is a persons brain loses the ability to process sound after not hearing sound....I am told this is at about 8 years old. You can't wait for the child to decide to have CI...it is too late then.
The words I played over and over when considering CI initially were him growing up and saying "how could you have done this .... why couldn't you have just let me be deaf and happy".....after the 6 years later I could hear him growing up and saying "why didn't you let me decide....why didn't you try".
If Joshua does not want to use his implants later in life, it will be his choice and I will support that. I hope that the benefits he receives from the implant will be important to his daily life and he will continue with it.
The children in his school that are deaf have CI. I had fears myself of...if I don't get him the CI where and who is his deaf community? His classmates are all speaking and hearing...not like a hearing person....but they are not signing like a deaf person either. I want him to freely live among both communities....and of course the hearing community.
I want him to easily communicate everywhere he goes in life.
What are my expectations?
I expect him to have awareness of sound.
What are my fears?
Things go wrong in surgery and he dies or has complications that leave him frustrated or unhappy....facial paralysis, tastes change, balance issues...these are all possibilties. As with any surgery then you have the risk of death....not even going to talk about this one....God did not bring him this far for him to die in surgery...so not even going to entertain that thought.
Praying for God to watch over him.
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