What a day.........that's all I got to say. My baby girl Ella, who is 10 1/2 months old had cochlear implant surgery yesterday. Sadly is was not a success. When they had already cut her open they discovered inflammation in her mastoid. If the surgeon had went ahead with the surgery there was a big chance that there would be certain complications. This was a MAJOR disappointment and huge letdown. But sadly this was not the first time this has happened.
December of 09 we took our middle daughter Natalie to get her first implant. At this time this was all new to us. We went in that morning understanding that it was a possibility but never dreaming that it would happen to us. After an hour of the doctors being back there with our precious child we received a call from the nurse. She informed us that the surgeon had found inflammation in her middle ear. Instead of receiving the cochlear implant, our life saving device, all we received was a huge 6 inch scar and a loss of beautiful, brown curly hair. We finally got her healed and back in the operating room 6 months later, 5 days after her 2nd birthday. This time it was a success and we have seen her grow ever since. But every good thing comes with a sacrifice. We drive 67 miles, one way, 4 days a week to the best school in the world, The Atlanta Speech School. Why drive that far you ask? Because there is no school like it. My deaf child with an implant is surrounded by other kids her age who have the same issues. This school is our family. And when you have something that special, you do anything you can to keep it.
Now back to Ella......You ask "How can you have 2 children that are deaf?" Well........ it is caused from a genetic disorder called connexin 26. Both parents have to carry the gene in order to have a child with hearing loss. Thank goodness though that it is non-syndromic, meaning that deafness is the only disability they will have. That was definitely a relief.
After a long night in the hospital we are finally at home. I couldn't have done it without my wonderful husband and loving sister. My husband slept on the floor last night while I was in the crib with Ella and my sister was on the couch. Needless to say we woke up veeeerrryyyy sore. I honestly don't know how my husband made it on the floor, but........he's a loving and devoted father.
When baby Ella woke up this morning they removed the bandage and it wasn't all that shocking......... with Natalie it was. Ella wasn't blessed with as much hair as Naty so thank goodness they didn't have to remove much. We tried to sit Ella up and I think her head was feeling a little funny (go figure) so she kept wobbling. Her face was a little swollen but everything comes with a price.
We were finally released around 10:30 and by the time we got home it was around noon. When my sister got Ella out of the car seat she noticed that she was a little warm. I just figured that it was from her being bundled up in the car seat. After sitting with her for about 20 minutes I noticed that she wasn't cooling down. I went and retrieved the thermometer and put it under her arm. 99.....100........101.......10
2.6, under her arm........By this time I was starting to panic a little. Now I am pretty much a calm person but the only thing I could think was "my baby just had major surgery and now she's running a fever......that can only mean an infection." My baby was too young though, Natalie never did this, what do I do! All these things were rushing through my head at once. I immediately remember the great nurse on the 4th floor at CHOA (Children's Healthcare of Atlanta). I'll cal her! Well after looking at ALL the discharge papers, I couldn't find a number, by this time the aggravation was starting to build. I finally just called the main number and after several attempts, finally reached the nurse's station on the 4th floor. But guess what...........Courtney was gone to lunch :( I spoke with another nurse and she told me I needed to call the Dr. immediately. I got off the phone with her and immediately called the Dr.'s nurse. Well guess what..........she was out to lunch. How could this be? How can everyone that I needed to talk to go to lunch?? Doesn't ANYONE ever stay in case of emergencies?? During this whole time we gave her some tylenol in hopes that it would start bringing the fever down. I decided to call her pediatrician to see what I needed to do and guess what......OUT TO LUNCH! By this time I was in tears. I could only think what if this is something that would be fatal. What if the infection has spread to her brain, what if I don't get her to the hospital in the next 30 minutes something really bad could happen.........After speaking to my sister I finally decided to call the first nurse back, well I couldn't remember how I had gotten to her in the first place so I just poured my heart out to the first person I talked to. After about 10 minutes she finally reached Dr. Todd's nurse. Finally! After speaking with her about my concerns she told me just to call the pediatrician and get her in immediately. I called and was told to be there in an hour and a half (We live 45 min away). Before I left I checked her temp and it had gone down to 101.4 so better........but not where I would like it to be. By the time we had gotten to the pediatrician her fever had gone and she was starting to act like normal. Whew............All that worrying for nothing. The pediatrician got her in immediately because they know the situation and didn't want her to be exposed to anything yucky and checked her over. Everything seemed to be fine. They decided to give her a rocefin shot which is an antibiotic. It gets in her system a lot sooner than if we had given her the oral antibiotic. The rocefin has to be given in 3 different dosages so we have to go back Sat. and Mon. for the rest of the antibiotic but.........you'll do anything for your kids. As long as they need me, I'll be there.
We are taking Natalie back to the pediatrician tomorrow because she is scheduled to have her 2nd implant next Wed and she has developed a little cough. The surgeon wants me to get her checked out before Wed because if the pediatrician thinks that she won't be able to get through surgery we'll have to reschedule. I'm hoping that it's something that can be cleared through antibiotics but at the same time, I don't want my child to go through another surgery with no implant. I pray that God's will will be done and that he'll give us peace in whatever he has planned for us.
In all this time we also have a wonderful 10 year old daughter. She has had to watch her parents give her sisters a little bit more attention than her and boy........that's painful. As a mother, you try to give all your kids the individual attention that they deserve but at the same time as a mother with special needs kids, it's very difficult. Naty and Ella do not get treated any different but......they are both babies. They tend to need a little more attention. Cayli has been great through it all. You couldn't ask for a better big sister.
For now, we smile and we hold our heads up because we are not in control. We get through everything through faith. As my pastor has told us, God DOES give us more than we can handle. He wants us to have faith in him and learn to cling to him through these difficult times.
I think I have shared as much as I can right now. Hopefully my next blog will not be as long but I have had this on my mind for a year now. Lots of things to say.
God bless to all!
December of 09 we took our middle daughter Natalie to get her first implant. At this time this was all new to us. We went in that morning understanding that it was a possibility but never dreaming that it would happen to us. After an hour of the doctors being back there with our precious child we received a call from the nurse. She informed us that the surgeon had found inflammation in her middle ear. Instead of receiving the cochlear implant, our life saving device, all we received was a huge 6 inch scar and a loss of beautiful, brown curly hair. We finally got her healed and back in the operating room 6 months later, 5 days after her 2nd birthday. This time it was a success and we have seen her grow ever since. But every good thing comes with a sacrifice. We drive 67 miles, one way, 4 days a week to the best school in the world, The Atlanta Speech School. Why drive that far you ask? Because there is no school like it. My deaf child with an implant is surrounded by other kids her age who have the same issues. This school is our family. And when you have something that special, you do anything you can to keep it.
Now back to Ella......You ask "How can you have 2 children that are deaf?" Well........ it is caused from a genetic disorder called connexin 26. Both parents have to carry the gene in order to have a child with hearing loss. Thank goodness though that it is non-syndromic, meaning that deafness is the only disability they will have. That was definitely a relief.
After a long night in the hospital we are finally at home. I couldn't have done it without my wonderful husband and loving sister. My husband slept on the floor last night while I was in the crib with Ella and my sister was on the couch. Needless to say we woke up veeeerrryyyy sore. I honestly don't know how my husband made it on the floor, but........he's a loving and devoted father.
When baby Ella woke up this morning they removed the bandage and it wasn't all that shocking......... with Natalie it was. Ella wasn't blessed with as much hair as Naty so thank goodness they didn't have to remove much. We tried to sit Ella up and I think her head was feeling a little funny (go figure) so she kept wobbling. Her face was a little swollen but everything comes with a price.
We were finally released around 10:30 and by the time we got home it was around noon. When my sister got Ella out of the car seat she noticed that she was a little warm. I just figured that it was from her being bundled up in the car seat. After sitting with her for about 20 minutes I noticed that she wasn't cooling down. I went and retrieved the thermometer and put it under her arm. 99.....100........101.......10
2.6, under her arm........By this time I was starting to panic a little. Now I am pretty much a calm person but the only thing I could think was "my baby just had major surgery and now she's running a fever......that can only mean an infection." My baby was too young though, Natalie never did this, what do I do! All these things were rushing through my head at once. I immediately remember the great nurse on the 4th floor at CHOA (Children's Healthcare of Atlanta). I'll cal her! Well after looking at ALL the discharge papers, I couldn't find a number, by this time the aggravation was starting to build. I finally just called the main number and after several attempts, finally reached the nurse's station on the 4th floor. But guess what...........Courtney was gone to lunch :( I spoke with another nurse and she told me I needed to call the Dr. immediately. I got off the phone with her and immediately called the Dr.'s nurse. Well guess what..........she was out to lunch. How could this be? How can everyone that I needed to talk to go to lunch?? Doesn't ANYONE ever stay in case of emergencies?? During this whole time we gave her some tylenol in hopes that it would start bringing the fever down. I decided to call her pediatrician to see what I needed to do and guess what......OUT TO LUNCH! By this time I was in tears. I could only think what if this is something that would be fatal. What if the infection has spread to her brain, what if I don't get her to the hospital in the next 30 minutes something really bad could happen.........After speaking to my sister I finally decided to call the first nurse back, well I couldn't remember how I had gotten to her in the first place so I just poured my heart out to the first person I talked to. After about 10 minutes she finally reached Dr. Todd's nurse. Finally! After speaking with her about my concerns she told me just to call the pediatrician and get her in immediately. I called and was told to be there in an hour and a half (We live 45 min away). Before I left I checked her temp and it had gone down to 101.4 so better........but not where I would like it to be. By the time we had gotten to the pediatrician her fever had gone and she was starting to act like normal. Whew............All that worrying for nothing. The pediatrician got her in immediately because they know the situation and didn't want her to be exposed to anything yucky and checked her over. Everything seemed to be fine. They decided to give her a rocefin shot which is an antibiotic. It gets in her system a lot sooner than if we had given her the oral antibiotic. The rocefin has to be given in 3 different dosages so we have to go back Sat. and Mon. for the rest of the antibiotic but.........you'll do anything for your kids. As long as they need me, I'll be there.
We are taking Natalie back to the pediatrician tomorrow because she is scheduled to have her 2nd implant next Wed and she has developed a little cough. The surgeon wants me to get her checked out before Wed because if the pediatrician thinks that she won't be able to get through surgery we'll have to reschedule. I'm hoping that it's something that can be cleared through antibiotics but at the same time, I don't want my child to go through another surgery with no implant. I pray that God's will will be done and that he'll give us peace in whatever he has planned for us.
In all this time we also have a wonderful 10 year old daughter. She has had to watch her parents give her sisters a little bit more attention than her and boy........that's painful. As a mother, you try to give all your kids the individual attention that they deserve but at the same time as a mother with special needs kids, it's very difficult. Naty and Ella do not get treated any different but......they are both babies. They tend to need a little more attention. Cayli has been great through it all. You couldn't ask for a better big sister.
For now, we smile and we hold our heads up because we are not in control. We get through everything through faith. As my pastor has told us, God DOES give us more than we can handle. He wants us to have faith in him and learn to cling to him through these difficult times.
I think I have shared as much as I can right now. Hopefully my next blog will not be as long but I have had this on my mind for a year now. Lots of things to say.
God bless to all!
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