What an exciting milestone! Boys Town activated its 500th cochlear implant this week. Congratulations, BTNRH!
http://www.omaha.com/article/20120829/LIVEWELL01/120829652/0
August 30, 2012
Audrena stands up by herself!
Audrena has certainly not let surgery slow her down! She has been doing all sorts of exciting things for Aunt Kelli while she's here. Today Daddy, Kelli, and Audrena were playing with our bag of "learning to listen" toys. Audrena repeated the "aaaaahhhh" for the airplane. She did this twice. She also said "boo" clearly a few times today. Those things are accomplishments in themselves, but the next one is really exciting. We will let you watch for yourself.
August 28, 2012
Cholesteatoma Complications
Today we checked into Boys Town with an optimistic attitude, just certain that this would be the last of Audrena's surgeries. We went through all of the pre-surgery business and handed Audrena off to the Anesthesiologist without such a nervous pit in our stomachs as we had last time. Audrena would receive her left side cochlear implant, and all would be well.
We received a visit from the surgical nurse shortly after surgery started. Everything was going fine, but Dr. L. had to cut a tiny section of hair, so she returned it to us in a ziplock bag.
About an hour later, we received a phone call from her stating that things were taking longer than normal due to Audrena's anatomy, which we expected. She would call in an hour with another update.
Soon after, Dr. L. came into the room and said, "We have been thrown a curve ball." He found a cholesteatoma behind Audrena's ear drum. This is basically a growth of skin that should not be there. If left to grow, it can cause hearing loss and other issues in a person with normal hearing. In Audrena's case, both he and Dr. K. agreed that it would be careless to continue with the implantation today. Doing so could push some of that skin tissue into the cochlea, and there would be no way to clean it out without destroying the possibility for an implant. Instead, they agreed to clean out the cholesteatoma and wait 6 months.
After 6 months has passed, he will do another CT scan to make sure it has not grown back. If things look good, then he will finish the cochlear implant surgery. He apologized for such disheartening news, but he explained that this is pretty rare. He has never had it happen in well over 700 surgeries. Leave it to our daughter to be that one case.
There was some talk about whether this might be congenital, but he concluded that the cholesteatoma was caused by the tube she had in her ear. He removed the tube and placed a fat graft and re-grafted the right ear since it had not taken.
After the surgery, Dr. L. came in again to report that Audrena was awake in the recovery room and with no facial nerve damage (always the main concern for Daddy, as he loves that precious smile). He again apologized and said this was something he could not have predicted, and in the grand scheme of things it will be a small bump in the road. We told him we are just happy that he is so cautious. It's always better to be safe than sorry.
As for the recovery, Audrena came out of the anesthesia much better this time, and they gave her an extra dose of Zofran, so she didn't get sick. She slept a lot, drank a couple cups of apple juice, and devoured a serving-and-a-half of meatloaf. They removed the IV and released us. We had a hotel room already, so Audrena had even more comfortable sleep. After a couple hours, she woke up dancing and smiling at her cousin, Brady, who came to see her.
It breaks our hearts to think about putting Audrena through another surgery. We had high hopes that this would be the last of them until she was into adulthood. Six months seems like such a long time! However, in keeping a positive attitude, we are thankful that Dr. L. found the cholesteatoma when he did. If left to grow, it could cause facial nerve damage, and we could lose that beautiful smile. We are also thankful that Dr. L. chose to implant the right ear first. We could otherwise have faced this setback before she ever had a CI, putting her speech and language behind even more. As it is, she does still have one implant, and her speech and language will continue to develop. So we are not being set back in that respect.
We will get the cute zebra print hearing aid back from USD, and she will get a new earmold to go with it. She will wear that to continue auditory nerve stimulation until Dr. L. is able to finish the implant. He did make a reference to retirement today, and I was quick to ask, "You're not planning to retire any time soon, are you?!?" He smiled and said something like, "Not before I get her implanted!" Just remember that promise, Dr. L! We have faith in Dr. K., but we love you!
We received a visit from the surgical nurse shortly after surgery started. Everything was going fine, but Dr. L. had to cut a tiny section of hair, so she returned it to us in a ziplock bag.
About an hour later, we received a phone call from her stating that things were taking longer than normal due to Audrena's anatomy, which we expected. She would call in an hour with another update.
Soon after, Dr. L. came into the room and said, "We have been thrown a curve ball." He found a cholesteatoma behind Audrena's ear drum. This is basically a growth of skin that should not be there. If left to grow, it can cause hearing loss and other issues in a person with normal hearing. In Audrena's case, both he and Dr. K. agreed that it would be careless to continue with the implantation today. Doing so could push some of that skin tissue into the cochlea, and there would be no way to clean it out without destroying the possibility for an implant. Instead, they agreed to clean out the cholesteatoma and wait 6 months.
After 6 months has passed, he will do another CT scan to make sure it has not grown back. If things look good, then he will finish the cochlear implant surgery. He apologized for such disheartening news, but he explained that this is pretty rare. He has never had it happen in well over 700 surgeries. Leave it to our daughter to be that one case.
There was some talk about whether this might be congenital, but he concluded that the cholesteatoma was caused by the tube she had in her ear. He removed the tube and placed a fat graft and re-grafted the right ear since it had not taken.
After the surgery, Dr. L. came in again to report that Audrena was awake in the recovery room and with no facial nerve damage (always the main concern for Daddy, as he loves that precious smile). He again apologized and said this was something he could not have predicted, and in the grand scheme of things it will be a small bump in the road. We told him we are just happy that he is so cautious. It's always better to be safe than sorry.
As for the recovery, Audrena came out of the anesthesia much better this time, and they gave her an extra dose of Zofran, so she didn't get sick. She slept a lot, drank a couple cups of apple juice, and devoured a serving-and-a-half of meatloaf. They removed the IV and released us. We had a hotel room already, so Audrena had even more comfortable sleep. After a couple hours, she woke up dancing and smiling at her cousin, Brady, who came to see her.
It breaks our hearts to think about putting Audrena through another surgery. We had high hopes that this would be the last of them until she was into adulthood. Six months seems like such a long time! However, in keeping a positive attitude, we are thankful that Dr. L. found the cholesteatoma when he did. If left to grow, it could cause facial nerve damage, and we could lose that beautiful smile. We are also thankful that Dr. L. chose to implant the right ear first. We could otherwise have faced this setback before she ever had a CI, putting her speech and language behind even more. As it is, she does still have one implant, and her speech and language will continue to develop. So we are not being set back in that respect.
We will get the cute zebra print hearing aid back from USD, and she will get a new earmold to go with it. She will wear that to continue auditory nerve stimulation until Dr. L. is able to finish the implant. He did make a reference to retirement today, and I was quick to ask, "You're not planning to retire any time soon, are you?!?" He smiled and said something like, "Not before I get her implanted!" Just remember that promise, Dr. L! We have faith in Dr. K., but we love you!
August 22, 2012
More Progress, Programming, and a Pre-Op Visit
My birthday was Monday. I got some of the best birthday presents a mommy could ask for. Reyana picked out Tinkerbell cupcakes for me, and she and Kelton sang "Happy Birthday," followed by huge hugs and kisses. Then that evening, I was playing with Audrena, working on the "ssshhhh" sound. I rocked her baby doll in my arms and said, "Ssshhhh. Baby is sleeping." After several times, Audrena took the baby from me, rocked it in her arms, and said very clearly, "Ssshhhh." It only happened once, but it was so clear. I was over the moon excited! What a great birthday present!
Yesterday we went for a programming session. As we waited in the lobby, they were having a preschool open house. We watched, as children with hearing aids and cochlear implants came in for their first day of school. It was interesting to see the CI parents looking at each CI child to see how that child was wearing his/her processor. It's sometimes a challenge to figure out where to clip Audrena's processor, although we love the waterproof Neptune and that she doesn't have to always have a processor on her ear. Someday we figure we will get her a behind-the-ear model so she has that option, but for now we joined those parents looking for ideas, especially as potty training is around the corner for us. We definitely wouldn't want a processor falling in the toilet!
Our Audiologist, J., asked what kinds of things we have noticed in the past two weeks. I warned her that she would think I was lying to her, but it was all true. Then I talked about Audrena beginning to turn when her name is called, saying "mmmm," saying "ssshhhh," playing Peek-A-Boo, and attempting to say "boo." She was happy to hear it all, and she did say that it's early for those things, particularly the "ssshhhh," which is not even age-appropriate for her to be doing yet. We were obviously excited to hear that, although we know we have lots of hard work ahead, and we'll have some slow times with Audrena's progress.
Audrena did not cooperate well in the booth, or for any reflex testing. She is, as J. said, "a hard nut to crack." So they adjusted her programs a bit and gave us two more to try, each one just slightly louder than the previous, but not by much, as Audrena is already hearing soft sounds like "ssshhhh."
We went to lunch in between the programming appointment and seeing Dr. L. There were speakers above each table, although the music was not very loud. The restaurant was pretty empty, so we did not have much noise to contend with. Throughout the meal, Audrena repeatedly pointed at her ear, then at the speakers, and she would often dance, or bounce to the beat of the music.
Here is a short video clip from my cell phone. I was a second too late to catch her really pointing at her ear, but that's what the video starts with. She then points up at the speakers, takes a bite of food, and dances/bounces to the music a bit.
After lunch, we walked the mall a bit and then headed to the Pre-Op appointment. As we waited in the lobby, a little boy asked very politely what Audrena was wearing on her head. Randy explained that her ear doesn't work, so this helps her hear. The little boy then turned to his mom and said, "Mom, you should get me one of those!" Randy laughed, picturing our own Kelton saying something like that since we are always telling him, "Listen to me!"
Dr. L. checked Audrena over, discussed the surgery, and answered any questions we had. One question was, how would she wear her other processor with the neoprene bandage over her head for 3 days? He said we should be able to adjust the magnet strength accordingly. Yay! I didn't want her to go 3 days without access to sound. By the end of the appointment, Audrena was plenty mad at Dr. L. for messing with her ears. He said he would see us Tuesday, patted me on the back, and said "bye bye" to Audrena. She looked at him like, "Yeah, that's right. I'm getting out of here." Then she turned and pointed at the door. He smiled and said, "You understood that didn't you!" She grinned back, as if to say, "Yes, I did!" Another small miracle.
Yesterday we went for a programming session. As we waited in the lobby, they were having a preschool open house. We watched, as children with hearing aids and cochlear implants came in for their first day of school. It was interesting to see the CI parents looking at each CI child to see how that child was wearing his/her processor. It's sometimes a challenge to figure out where to clip Audrena's processor, although we love the waterproof Neptune and that she doesn't have to always have a processor on her ear. Someday we figure we will get her a behind-the-ear model so she has that option, but for now we joined those parents looking for ideas, especially as potty training is around the corner for us. We definitely wouldn't want a processor falling in the toilet!
Our Audiologist, J., asked what kinds of things we have noticed in the past two weeks. I warned her that she would think I was lying to her, but it was all true. Then I talked about Audrena beginning to turn when her name is called, saying "mmmm," saying "ssshhhh," playing Peek-A-Boo, and attempting to say "boo." She was happy to hear it all, and she did say that it's early for those things, particularly the "ssshhhh," which is not even age-appropriate for her to be doing yet. We were obviously excited to hear that, although we know we have lots of hard work ahead, and we'll have some slow times with Audrena's progress.
Audrena did not cooperate well in the booth, or for any reflex testing. She is, as J. said, "a hard nut to crack." So they adjusted her programs a bit and gave us two more to try, each one just slightly louder than the previous, but not by much, as Audrena is already hearing soft sounds like "ssshhhh."
We went to lunch in between the programming appointment and seeing Dr. L. There were speakers above each table, although the music was not very loud. The restaurant was pretty empty, so we did not have much noise to contend with. Throughout the meal, Audrena repeatedly pointed at her ear, then at the speakers, and she would often dance, or bounce to the beat of the music.
Here is a short video clip from my cell phone. I was a second too late to catch her really pointing at her ear, but that's what the video starts with. She then points up at the speakers, takes a bite of food, and dances/bounces to the music a bit.
After lunch, we walked the mall a bit and then headed to the Pre-Op appointment. As we waited in the lobby, a little boy asked very politely what Audrena was wearing on her head. Randy explained that her ear doesn't work, so this helps her hear. The little boy then turned to his mom and said, "Mom, you should get me one of those!" Randy laughed, picturing our own Kelton saying something like that since we are always telling him, "Listen to me!"
Dr. L. checked Audrena over, discussed the surgery, and answered any questions we had. One question was, how would she wear her other processor with the neoprene bandage over her head for 3 days? He said we should be able to adjust the magnet strength accordingly. Yay! I didn't want her to go 3 days without access to sound. By the end of the appointment, Audrena was plenty mad at Dr. L. for messing with her ears. He said he would see us Tuesday, patted me on the back, and said "bye bye" to Audrena. She looked at him like, "Yeah, that's right. I'm getting out of here." Then she turned and pointed at the door. He smiled and said, "You understood that didn't you!" She grinned back, as if to say, "Yes, I did!" Another small miracle.
August 18, 2012
10 Days Post-Activation
It's been 10 days since Audrena's first cochlear implant was turned on. We are still on a pretty preliminary set of programs, and we've already seen lots of improvement. The first night, Audrena reacted to clapping, toilet flushing, and semi trucks driving by on the highway. Since then, things have continued to get better!
We have been working on the learning to listen sounds, but we've also been just having fun. One reason that, as parents, Randy and I feel Audrena's hearing loss was progressive is that she used to say "boo" when we played Peek-A-Boo. That gradually stopped. So one of the things we have been doing for fun is playing Peek-A-Boo. Audrena hides behind the bathroom door and we say, "Peek!" She then opens the door, and we say, "Boo!" After awhile, she always loses interest, and we hear her opening the cabinets in the bathroom. So then we say something like, "Audrena, where is the BOO?" She almost always opens the door then. We also feel like she has tried to say "boo" a few times as well. I caught it once and thought it was a coincidence, but then Randy mentioned it to me the next day after he played with her. So we feel like it's a possibility. We know it's really early for her to be doing any of this, but she did say it before, so maybe she is starting to remember.
Also, Audrena has always said "mamamama," and that was her universal name for both me and Randy. We have noticed that she is saying "mama" more often and discriminating so that she says it more when she wants me.
Because Audrena can do the "m" sound in "mama," I have been really working on "mmmmm" when she eats. Yesterday, she was eating in her high chair, and I was sitting next to her at the table. As usual, when she would take a bite I would say, "Mmmmm. Yummy food!" She said "mmmmm" a few times. I thought she couldn't possibly be saying it that quickly. After all, this is the time where she is supposed to be figuring out what she is hearing, and her receptive language is supposed to be developing. So I called for Randy to come over and watch. Sure enough, after I said "mmmmm," she followed with her own "mmmmm." Then Randy tried it. She did it for him a few times as well.
We know that Audrena is not hearing at all levels yet with just the first few programs, but we're absolutely thrilled to see her doing these things in just 10 days! It doesn't seem possible. We certainly didn't expect it for some time yet. Hopefully it's a good sign of things to come.
We have Audrena's next programming appointment and a pre-op appointment coming up this week, then surgery again on the 28th. This time we are nervous, but we have been through it once, so we at least know what to expect. It's still not easy to hand our baby off to the surgical team. But we have seen what potential she has with the cochlear implant, so there is a bright light at the end of the tunnel!
We have been working on the learning to listen sounds, but we've also been just having fun. One reason that, as parents, Randy and I feel Audrena's hearing loss was progressive is that she used to say "boo" when we played Peek-A-Boo. That gradually stopped. So one of the things we have been doing for fun is playing Peek-A-Boo. Audrena hides behind the bathroom door and we say, "Peek!" She then opens the door, and we say, "Boo!" After awhile, she always loses interest, and we hear her opening the cabinets in the bathroom. So then we say something like, "Audrena, where is the BOO?" She almost always opens the door then. We also feel like she has tried to say "boo" a few times as well. I caught it once and thought it was a coincidence, but then Randy mentioned it to me the next day after he played with her. So we feel like it's a possibility. We know it's really early for her to be doing any of this, but she did say it before, so maybe she is starting to remember.
Also, Audrena has always said "mamamama," and that was her universal name for both me and Randy. We have noticed that she is saying "mama" more often and discriminating so that she says it more when she wants me.
Because Audrena can do the "m" sound in "mama," I have been really working on "mmmmm" when she eats. Yesterday, she was eating in her high chair, and I was sitting next to her at the table. As usual, when she would take a bite I would say, "Mmmmm. Yummy food!" She said "mmmmm" a few times. I thought she couldn't possibly be saying it that quickly. After all, this is the time where she is supposed to be figuring out what she is hearing, and her receptive language is supposed to be developing. So I called for Randy to come over and watch. Sure enough, after I said "mmmmm," she followed with her own "mmmmm." Then Randy tried it. She did it for him a few times as well.
We know that Audrena is not hearing at all levels yet with just the first few programs, but we're absolutely thrilled to see her doing these things in just 10 days! It doesn't seem possible. We certainly didn't expect it for some time yet. Hopefully it's a good sign of things to come.
We have Audrena's next programming appointment and a pre-op appointment coming up this week, then surgery again on the 28th. This time we are nervous, but we have been through it once, so we at least know what to expect. It's still not easy to hand our baby off to the surgical team. But we have seen what potential she has with the cochlear implant, so there is a bright light at the end of the tunnel!
August 15, 2012
We've had our first scare.
Monday was Audrena's first day back at daycare. About mid-morning, I got a call from daycare asking if we might have a headband or something to help them keep the headpiece on. Remember that we are waiting for a magnet, so in the meantime I have it configured so that it's too weak rather than too strong. I ran to Wal-Mart and picked up a set of cloth headbands and dropped them off. The one I put on her fit nicely, not too tight, and it worked well for them.
Randy went to daycare in the afternoon for an in-service with our SD School for the Deaf worker. All was well, and the training went well. That was at 2:30.
At about 5:10, I arrived to pick up the kids. Audrena was fussy, and I attributed it to an overwhelmingly stimulating day. When we got home, I was calming her down, and I ran my hand over her forehead and cheek. She felt warm. I took her temperature, and the thermometer read 100.4. We were 2 weeks out from the first surgery and 2 weeks until the next surgery. I struggled with wanting to panic. This could be infection.
Immediately, I let Randy know. He was able to stop home for his supper break. Right away, he noticed that her implant site seemed swollen. The internal implant just looked like it was sticking out more than it had been. I had heard about instances where the implant site gets really infected and had to be removed until it's clear of infection. My mind went to the worst place, and I was so sick about it that I just wanted to throw up.
I called the after hours line for Boys Town, and a nurse called me back. He said it was probably fine to wait until morning since it was a low fever, and I should call the doctor's office then. I gave Audrena a dose of Tylenol, and she was so exhausted that she quickly fell asleep. All evening, I kept checking her temperature and feeling the implant site while she slept. After Reyana and Kelton were asleep, I brought Audrena into my bed so I could keep close watch over her. All night long, I kept waking to check her temperature. I would let the Tylenol wear off awhile to see what the fever was doing. It climbed very slowly.
Right away the next morning I called Boys Town. I was able to forward a photo of the implant site to Dr. L.'s nurse. She consulted with him, and he suggested that we see our family doctor. His nurse called our family doctor's office and instructed them on what they should look for. Randy took Audrena to see Dr. A. She checked Audrena over well and did a CBC to check her levels. That came back just fine, and she said there was no indication of infection around the incision, in the ears, or at the implant site. But she did have a swollen lymph node on the left side, and those counts were slightly elevated on the CBC. She called Dr. L.'s nurse back to consult with her.
They think Audrena had a bit of a virus. Also, the nurse said sometimes after activation the soft tissue swells a bit. We also wonder if the headband might have irritated the tissue at the implant site a bit as well. The fever has gone away, and Audrena is back to normal. What a scare! I was so worried!
Randy went to daycare in the afternoon for an in-service with our SD School for the Deaf worker. All was well, and the training went well. That was at 2:30.
At about 5:10, I arrived to pick up the kids. Audrena was fussy, and I attributed it to an overwhelmingly stimulating day. When we got home, I was calming her down, and I ran my hand over her forehead and cheek. She felt warm. I took her temperature, and the thermometer read 100.4. We were 2 weeks out from the first surgery and 2 weeks until the next surgery. I struggled with wanting to panic. This could be infection.
Immediately, I let Randy know. He was able to stop home for his supper break. Right away, he noticed that her implant site seemed swollen. The internal implant just looked like it was sticking out more than it had been. I had heard about instances where the implant site gets really infected and had to be removed until it's clear of infection. My mind went to the worst place, and I was so sick about it that I just wanted to throw up.
I called the after hours line for Boys Town, and a nurse called me back. He said it was probably fine to wait until morning since it was a low fever, and I should call the doctor's office then. I gave Audrena a dose of Tylenol, and she was so exhausted that she quickly fell asleep. All evening, I kept checking her temperature and feeling the implant site while she slept. After Reyana and Kelton were asleep, I brought Audrena into my bed so I could keep close watch over her. All night long, I kept waking to check her temperature. I would let the Tylenol wear off awhile to see what the fever was doing. It climbed very slowly.
Right away the next morning I called Boys Town. I was able to forward a photo of the implant site to Dr. L.'s nurse. She consulted with him, and he suggested that we see our family doctor. His nurse called our family doctor's office and instructed them on what they should look for. Randy took Audrena to see Dr. A. She checked Audrena over well and did a CBC to check her levels. That came back just fine, and she said there was no indication of infection around the incision, in the ears, or at the implant site. But she did have a swollen lymph node on the left side, and those counts were slightly elevated on the CBC. She called Dr. L.'s nurse back to consult with her.
They think Audrena had a bit of a virus. Also, the nurse said sometimes after activation the soft tissue swells a bit. We also wonder if the headband might have irritated the tissue at the implant site a bit as well. The fever has gone away, and Audrena is back to normal. What a scare! I was so worried!
August 11, 2012
Oh those magnets!
I already had to call on some more experienced parents for help with Audrena's CI. That didn't take long! We suspected that Audrena's headpiece magnet was too strong. It was creating a pink circle on her skin, and we were afraid of skin breakdown, which can be very bad. We were not sure if it was just her super-sensitive fair skin, or if it really was a magnet issue. I received some good suggestions, so we are giving one a try, and I think it is helping.
Inside of the Neptune headpiece, there is a magnet (or two in the water mic) and a foam spacer. There is a magnet in the internal implant component. The headpiece magnet attaches itself to the magnet inside of Audrena's head, so there is not actually anything showing through her skin. If she was not wearing the external components, there would be no indication that she has a cochlear implant. I'm including a picture below to show what I'm talking about. The magnet typically goes into the hole in the grey piece first (so it's closest to the skin), then the spacer, and the white cap fits over top.
The suggestion we are trying is to put the spacer in first, then the magnet. It is a little weak that way, but it will get us through the weekend. Monday we will contact our Audiologist for a weaker strength magnet, or see if she has any other tricks for us to try.
Another suggestion we received would be to loosen the screw a bit. The Neptune does not have a screw. However, I think the Cochlear brand implants do.
Some of my blogs may be pretty mundane or technical details that most people would not be interested in reading, but I hope they will help a new CI parent (such as myself) someday.
Inside of the Neptune headpiece, there is a magnet (or two in the water mic) and a foam spacer. There is a magnet in the internal implant component. The headpiece magnet attaches itself to the magnet inside of Audrena's head, so there is not actually anything showing through her skin. If she was not wearing the external components, there would be no indication that she has a cochlear implant. I'm including a picture below to show what I'm talking about. The magnet typically goes into the hole in the grey piece first (so it's closest to the skin), then the spacer, and the white cap fits over top.
 |
| Grey water mic, two magnets with foam spacer sitting between, and white cap. |
The suggestion we are trying is to put the spacer in first, then the magnet. It is a little weak that way, but it will get us through the weekend. Monday we will contact our Audiologist for a weaker strength magnet, or see if she has any other tricks for us to try.
Another suggestion we received would be to loosen the screw a bit. The Neptune does not have a screw. However, I think the Cochlear brand implants do.
Some of my blogs may be pretty mundane or technical details that most people would not be interested in reading, but I hope they will help a new CI parent (such as myself) someday.
August 10, 2012
The Big Activation was a Success!
Wednesday morning found us in Omaha again. Audrena had an x-ray, and then we saw Dr. L. He showed us the x-ray and showed us the marking electrode, which he would have liked to get 1 millimeter further in, but he said it was a full insertion. We held Audrena down while he removed the stitches, which were mostly dissolved already, and she was madder than a hornet! Then he looked at he packing in her ear. (He had removed her tube and patched it with a fat graft.) He preferred to leave that in awhile, so he will likely take it out during the left ear CI surgery. We discussed the activation appointment, and we asked him to take a quick look at her medical alert bracelet to see that it contained the right information. Then we were on our way.
After lunch we returned to the Lied Center for the activation. The IT man did a few last minute things to prepare for the webcast, we chatted with the implant team manager, made a few phone calls to make sure our family had gotten into the webcast, and then it was time to start.
Our Audiologist explained a little about the process, that they would test each electrode for responses from the auditory nerve, and they would put beeps through the implant, watching carefully for cues from Audrena (i.e. blinking, or turning into my shoulder) to make sure it was not too loud. After all of that, they would turn on the mic so that she could hear sounds within the room. There was another Audiologist playing with Audrena to keep her attention and also to watch for those cues.
Here is a short clip of Audrena's first response to sound! She heard the beep and then turned to look at the Audiologist behind me. She responded that way throughout the programming. At that first head turn, we felt like we shouldn't believe it. Did we really see her turn to a sound? We couldn't believe our eyes. Then she started consistently stilling, turning her eyes back and forth to try to localize it, and then turning to look at the Audiologist. We did a pretty good job of keeping our emotions in check, but we fought the tears for sure! It was an overwhelming moment. I can't even describe the rush of emotion. From silence to sound with a series of beeps, and our daughter's life is forever changed. We knew in that moment, with every bit of our hearts, that we made the right decision.
After the programming was done for the day, the Audiologist gave us the rundown of how to care for the Advanced Bionics Neptune. She told us that there were 3 program levels that we should work through before the next morning. If any one of them seemed too loud for Audrena (i.e. if we noticed blinks or other reactions), we should back off and go back to the previous program. We took our suitcase full of equipment and went to the Listening Therapy appointment.
Our Speech-Language Pathologist went over things we should do at home, and she engaged in some play with Audrena, showing us how we can help Audrena to develop her speech and language. We did notice that Audrena seemed to hear her when she made the "aaaahhhh" noise for a toy airplane and the "ssshhhh" noise for a sleeping baby. Audrena also turned when the SLP accidentally slammed the toy cabinet door. In retrospect, we should have been participating a little more in this appointment, but by this time we were mentally exhausted and mostly just watched. I promise we soaked in the information, though!
After we were done, we went to check into our hotel. We quickly discovered that it's impossible to keep the headpiece on in the car seat. Since then, an experienced parent has suggested we get out our Hanna Andersson Aviator Cap for car rides. For the time being, we gave up on keeping the CI on in the car. My grandma was in the hospital, so we decided to take Audrena to see her. What better thing to lift the spirits than a visit from your great-grandbaby? The extra two hours in the car that day were completely worth it to see Grandma and Audrena together!
It was a long and exhausting day, but we did observe Audrena responding to sound. I went to bed emotionally and mentally drained. It was pretty taxing to observe Audrena hearing with her implant, then to see my grandma in the hospital, to replace the headpiece a million and ten times both in and out of the car, and then to have to try to remember what exactly we needed to do with the implant for the overnight. We had to unpack the "suitcase" of supplies and sort through it to find what we needed. It was a late night. Needless to say, we all slept very good!
The next morning, we were back with our Audiologists for more programming. They finished testing the electrodes and developed two additional programs for us to try. Audrena did pretty well for about an hour, and then she was just done. They did say that usually they see a big blossom from the children at either one or three months. We will be back in two weeks for another session. When we got to the car, Audrena fell asleep immediately! She was exhausted.
Since we have been home, we have seen Audrena protest heartily when her CI is removed, point at her ear when she hears a sound, and concentrate when she hears something. We didn't expect all of these things so soon after activation. After all, we are in the early stages of programming right now.
I would also like to take the opportunity to address something because other new CI parents are likely to run into the same situation at some point. We knew going into this that cochlear implants are very controversial. The Deaf community/culture (not sure I'm using the correct terms here) can be very anti-implant for various reasons. I understand that. I respect that completely. I experienced both support for, and resistance to, Audrena's implant today. I didn't expect it so soon, but I knew it would happen someday. Without getting into identities on a public blog, I will just say that I received some good words from a deaf person who does not have a CI, and I also had a deaf person tell me that we should have waited until Audrena is old enough to decide for herself. She also told me that if Audrena were in an accident, she could not be resuscitated with paddles because it would "blow her brains out." I know that is untrue and is an old wives' tale, so to speak, about cochlear implants. My husband and I both have just enough medical background to know what is or is not possible. People quickly came to my defense, and I appreciate that. Randy and I did not take this decision lightly. We weighed the risks. We asked the medical questions. We explored our options wholeheartedly. We even considered moving to Minnesota or St. Louis to be near an excellent school for the deaf. We considered what Audrena might or might not want later in life. We know that deaf people absolutely thrive with sign language, and they can do great things. In fact, we do plan to have Audrena learn sign language as she gets older because there is always the possibility that she will need it. Not being able to hear would not make or break Audrena, but we are confident that it will help her throughout life. If Audrena decides she does not want the implant later in life, then she can choose not to wear it, or she can choose to have it removed. In the meantime, we are committed to our decision, and we're happy with the results we have seen thus far in these early days.
We'll continue to keep you all updated as the next surgery date approaches!
After lunch we returned to the Lied Center for the activation. The IT man did a few last minute things to prepare for the webcast, we chatted with the implant team manager, made a few phone calls to make sure our family had gotten into the webcast, and then it was time to start.
Our Audiologist explained a little about the process, that they would test each electrode for responses from the auditory nerve, and they would put beeps through the implant, watching carefully for cues from Audrena (i.e. blinking, or turning into my shoulder) to make sure it was not too loud. After all of that, they would turn on the mic so that she could hear sounds within the room. There was another Audiologist playing with Audrena to keep her attention and also to watch for those cues.
Here is a short clip of Audrena's first response to sound! She heard the beep and then turned to look at the Audiologist behind me. She responded that way throughout the programming. At that first head turn, we felt like we shouldn't believe it. Did we really see her turn to a sound? We couldn't believe our eyes. Then she started consistently stilling, turning her eyes back and forth to try to localize it, and then turning to look at the Audiologist. We did a pretty good job of keeping our emotions in check, but we fought the tears for sure! It was an overwhelming moment. I can't even describe the rush of emotion. From silence to sound with a series of beeps, and our daughter's life is forever changed. We knew in that moment, with every bit of our hearts, that we made the right decision.
After the programming was done for the day, the Audiologist gave us the rundown of how to care for the Advanced Bionics Neptune. She told us that there were 3 program levels that we should work through before the next morning. If any one of them seemed too loud for Audrena (i.e. if we noticed blinks or other reactions), we should back off and go back to the previous program. We took our suitcase full of equipment and went to the Listening Therapy appointment.
Our Speech-Language Pathologist went over things we should do at home, and she engaged in some play with Audrena, showing us how we can help Audrena to develop her speech and language. We did notice that Audrena seemed to hear her when she made the "aaaahhhh" noise for a toy airplane and the "ssshhhh" noise for a sleeping baby. Audrena also turned when the SLP accidentally slammed the toy cabinet door. In retrospect, we should have been participating a little more in this appointment, but by this time we were mentally exhausted and mostly just watched. I promise we soaked in the information, though!
After we were done, we went to check into our hotel. We quickly discovered that it's impossible to keep the headpiece on in the car seat. Since then, an experienced parent has suggested we get out our Hanna Andersson Aviator Cap for car rides. For the time being, we gave up on keeping the CI on in the car. My grandma was in the hospital, so we decided to take Audrena to see her. What better thing to lift the spirits than a visit from your great-grandbaby? The extra two hours in the car that day were completely worth it to see Grandma and Audrena together!
It was a long and exhausting day, but we did observe Audrena responding to sound. I went to bed emotionally and mentally drained. It was pretty taxing to observe Audrena hearing with her implant, then to see my grandma in the hospital, to replace the headpiece a million and ten times both in and out of the car, and then to have to try to remember what exactly we needed to do with the implant for the overnight. We had to unpack the "suitcase" of supplies and sort through it to find what we needed. It was a late night. Needless to say, we all slept very good!
The next morning, we were back with our Audiologists for more programming. They finished testing the electrodes and developed two additional programs for us to try. Audrena did pretty well for about an hour, and then she was just done. They did say that usually they see a big blossom from the children at either one or three months. We will be back in two weeks for another session. When we got to the car, Audrena fell asleep immediately! She was exhausted.
Since we have been home, we have seen Audrena protest heartily when her CI is removed, point at her ear when she hears a sound, and concentrate when she hears something. We didn't expect all of these things so soon after activation. After all, we are in the early stages of programming right now.
I would also like to take the opportunity to address something because other new CI parents are likely to run into the same situation at some point. We knew going into this that cochlear implants are very controversial. The Deaf community/culture (not sure I'm using the correct terms here) can be very anti-implant for various reasons. I understand that. I respect that completely. I experienced both support for, and resistance to, Audrena's implant today. I didn't expect it so soon, but I knew it would happen someday. Without getting into identities on a public blog, I will just say that I received some good words from a deaf person who does not have a CI, and I also had a deaf person tell me that we should have waited until Audrena is old enough to decide for herself. She also told me that if Audrena were in an accident, she could not be resuscitated with paddles because it would "blow her brains out." I know that is untrue and is an old wives' tale, so to speak, about cochlear implants. My husband and I both have just enough medical background to know what is or is not possible. People quickly came to my defense, and I appreciate that. Randy and I did not take this decision lightly. We weighed the risks. We asked the medical questions. We explored our options wholeheartedly. We even considered moving to Minnesota or St. Louis to be near an excellent school for the deaf. We considered what Audrena might or might not want later in life. We know that deaf people absolutely thrive with sign language, and they can do great things. In fact, we do plan to have Audrena learn sign language as she gets older because there is always the possibility that she will need it. Not being able to hear would not make or break Audrena, but we are confident that it will help her throughout life. If Audrena decides she does not want the implant later in life, then she can choose not to wear it, or she can choose to have it removed. In the meantime, we are committed to our decision, and we're happy with the results we have seen thus far in these early days.
We'll continue to keep you all updated as the next surgery date approaches!
August 4, 2012
Surgery Details and Beyond
What a week! To say that we are exhausted is an understatement. It all started Monday evening. We arrived in Omaha at 9:00 pm. I had booked our hotel stay through Expedia. When we arrived, the hotel told us that Expedia's payment method had been declined, so we could not check in. I called Expedia, and it said the wait time was 43 minutes. Talk about one unhappy mama! In the meantime, we gave the hotel our credit card so that we could check into a room. I waited an hour and 15 minutes, at which time Randy called a different Expedia phone number and got right through. After some effort, he got the problem resolved, and we could actually settle in for the night. I think we actually got to bed around 11:00.
At 5:30 am we were checking in at Boys Town. They took us to our room, and Audrena cried while the nurse listened to her lungs and checked her oxygen levels. I wanted to cry right there. It was all pretty overwhelming.
We took Audrena to play in the toy room, where the child life specialist came to talk to us, and the anesthesiologist came to introduce himself.
We talked to the anesthesiologist for a bit, and then we went back to our room to wait for Dr. L. He came in, confirmed that Audrena would receive an Advanced Bionics implant, checked her ears, and discussed things with us a little more. Once again, we talked about the risk to the facial nerve. This had always been a worry for Daddy, as he loves his baby girl's smile and double dimple. Dr. L. explained that in all the many hundreds of surgeries, he has never had an issue, and he assured us he would take it very slow. He marked Audrena's ear with an X and then left.
I'm a little foggy here, but at some point, the surgical nurse came in to introduce herself (not sure if it was before or after Dr. L.). She said she would give 2 updates--once when the incision was made, and once when they were done with surgery.
Soon the anesthesiologist and surgical nurse were back to take Audrena from us. He waited patiently as I gave her a long hug and a kiss, then passed her off to Daddy, who gave her hugs and kisses. It was so hard to hand her over, so we continued to pass her back and forth for a bit. After one last loooooong hug and a kiss, I finally handed her into the warm blanket he was holding. He assured me he would take good care of her, and they left.
I sat in the recliner and cried. Randy hugged me, and we cried together. The nurse came in and saw me. She made sure I had Kleenex. At some point, she had asked if we slept much the night before. I said, "No. Not really." She promptly brought in a fold-up bed, pillows, blankets, and then made sure we had something to eat and drink. I did take the blanket and close my eyes, although it would have been impossible to nap with my worries.
We got the first update at 7:55 am. The incision had been made. I cried again.
We expected to receive the next update 3 - 3 1/2 hours later. It came sooner than that. Our nurse came in with the message, "Implant is going in. She's doing great." I said, "The drilling is done?" She said, "Yes, it's all done." I breathed a sigh of relief, and Randy and I both cried and hugged each other tightly.
Dr. L's fantastic office nurse stopped in to see how we were doing. Talk about going above and beyond! As she was leaving, our nurse came in with another update. They were finished and closing her up. The message came at 10:55 am. Dr. L. was right on the money when he predicted a 3 - 3 1/2 hour surgery.
Then came the update that they were all done, and she was doing great.
Dr. L. came in to say that he got a full electrode insertion. However, as he thought, she had a "gusher" of spinal fluid when he drilled into her cochlea. He packed it tightly with tissue, and he said as a result, two of the electrodes tested with very high thresholds. He was unsure if they would be useable. We do know that they can program around that, so it's not a big deal. He explained that when he removed her ear tube, he used a fat graft, and Audrena's ear would be draining for a few days. Then he told Randy that the facial nerve never went off and was never exposed. There would be no damage. He grinned and gave Randy a little punch to the shoulder on the way out of the room. I saw pure relief on Randy's face.
Soon our audiologist came in to complete our processor and accessory order. We ordered two Neptune processors because, in a certain configuration, they are waterproof. Besides, we thought it would give Audrena the freedom of not having something on her ear all the time. In a few years, when we're hopefully eligible for an upgrade, we will reconsider getting her a behind-the-ear processor. We had tons of color choices and accessories to order. Audrena will make quite the fashion statement!
Awhile later, our nurse came in and asked if we were ready for Audrena. Who would hold her first? Did I have to use the restroom first? What did I need to be comfortable? It would be awhile before I would get up again. I think I was a little unprepared when they brought her to me. She looked so little and pathetic with her bandage and IV. I cried a little and just reminded myself that it would all be worth it.
It wasn't long, and I had the first (and only) inkling that she might be in some pain. The morphine was wearing off, but our nurse was quick with the Tylenol. When it was time to change the bandage, I was surprised at how much her ear was draining, but it was clearish red drainage, the normal kind after a surgery. I was also surprised at how clean and discreet the incision was. He had stitched it shut, and he did a neat job of it. Also, they did not shave any of her hair. That's good because her hair is thin, so she needs all the hair she can get!
Audrena slept for a long time that first day. She was, no doubt, exhausted from a late night, an early morning, and the anesthesia. Around 4:00 we finally got her to wake up enough to drink something. She then threw up all over me. I had extra clothes, but they were at the hotel. The nurses were quick to get me scrubs so that I wouldn't have to walk into the hotel covered in vomit. Audrena promptly went back to sleep.
We ordered Audrena a dinner tray, but when Randy sat her up to eat, her chin fell to her chest as she went right back to sleep. At some point, I laid down on the fold-up bed with Audrena, thinking we would both be more comfortable. Then our nephew, Brady, came to see her. Randy's cousins Brandie and Trenton came to see her at about the same time as well. She opened her eyes just a bit, saw Brady, closed her eyes, opened them to look at him, and when he got up to come closer, she gave us the first smile we had seen since before surgery! It brought tears to our eyes. She tried to sit up, so we moved to the recliner. Immediately, she was hungry, so Daddy fed her the meatloaf we had ordered earlier. She devoured it and was mad when it was gone. She drank some apple juice as well.
By that time, we had all (Dr. L., too) decided it would be best for us to stay overnight since she had not eaten or drank much until late. We were the only patients in the hospital by that point, as the rest of the surgeries were same day patients. They moved us to a room with a hospital bed instead of a crib.
Our night nurse changed Audrena's bandage, and we began to settle in for the night. Randy and Brady went back to the hotel, and I stayed with Audrena. Probably 15 minutes later, I moved her head off of my arm and onto the bed, accidentally pulling her bandage off. I rang for the nurse so she could help me put it back on, and I noticed that the gauze was soaked with blood, and there was a clot. She called Dr. L. to see if that was normal. He said not to worry, that it might do that. So she re-dressed it, and we went to sleep.
Surprisingly, Audrena and I slept well (with the normal wake-ups from the nurse checking on her), and the bandage just had the normal drainage again in the morning. Dr. L. came in after Randy arrived, and he released us. It's a good thing because Audrena had been trying to pull her IV out, and it was pretty tough to keep her happy in the play room with an IV pole in tow! She was ready to go home!
As we left the hospital, a lady we had never seen before stopped us to ask how the night had been and how Audrena was doing. We assume she must have been a nurse or someone in the operating room. We really don't know. What we do know is that every single person at Boys Town went out of their way to make us comfortable and to show they really cared about Audrena. The level of care she received was better than outstanding.
By the time we got home Wednesday afternoon, Audrena was nearly back to her normal self. By Thursday afternoon, if she had not had the bandage, you would never know she had surgery. She played and climbed like normal.
Friday, we noticed that her incision area was getting pink. I e-mailed Dr. L.'s nurse to make sure that was normal. Dr. L. didn't waste any time calling me back. He said she had received a long-acting IV antibiotic, and it was probably ok. However, to err on the side of extra caution, he did call in an antibiotic. By Friday, the ear drainage had pretty much stopped, just in time for the bandage to come off.
Today we are just continuing the ear drops and keeping an eye on the incision site. She has started to itch her head, and we have had to make sure she is not itching her stitches. We take that to mean she is healing. Audrena is keeping us on our toes, and all is well. We are waiting anxiously for Wednesday, when we go back for our follow-up appointment and the activation!
If you have made it this far, you're awesome. These have all been details I didn't want to forget, so it got pretty long. Now I'm going to share some thoughts about the process.
We kept our friends and family updated on Facebook and through text messages throughout the surgery. We could not have gotten through this without them. It comforted us to see so many people praying for Audrena and wishing her well. The words of encouragement meant more than anyone will ever know.
Will the next surgery be as mentally draining? Yes. We're still allowing someone to operate on our baby. But at least we know what to expect. And we know how quickly Audrena bounced back. I don't have to fear the pain for her because I know that it really is controlled with Tylenol. I watched her carefully for any signs of pain, and she only showed it that one time. We feel much better-equipped to handle things. We also know that Audrena will get the best level of care in the hospital.
We would make the same decision again. The opportunity to hear far outweighs the recovery time from the surgery.
An excellent surgeon is worth his (or her) weight in gold--and more. We will be eternally grateful to Dr. L. for giving Audrena the gift of hearing. And we will forever praise Boys Town and its staff for providing amazing care.
Another random thought--Audrena's medical alert bracelet arrived just in time. I had asked Dr. L. at her pre-op appointment what it should say, and he said it was important for it to say no MRI and no monopolar cautery. I was able to order one that is engraved on both sides so that it could include that she has cochlear implants, NO MRI & NO MONOPOLAR CAUTERY, Daddy's cell phone number, and the phone number for Boys Town for information. We know that not all cochlear implant recipients wear medical alert bracelets, but we felt like it was important for Audrena to wear one. It's just the right size for her ankle, and she doesn't mess with it when she wears it.
Well, that's all I have for now. On to activation! We will be sure to post video and photos of the big occasion.
At 5:30 am we were checking in at Boys Town. They took us to our room, and Audrena cried while the nurse listened to her lungs and checked her oxygen levels. I wanted to cry right there. It was all pretty overwhelming.
We took Audrena to play in the toy room, where the child life specialist came to talk to us, and the anesthesiologist came to introduce himself.
 |
| Somehow the date was wrong on our camera. I'm going to have to fix that. |
We talked to the anesthesiologist for a bit, and then we went back to our room to wait for Dr. L. He came in, confirmed that Audrena would receive an Advanced Bionics implant, checked her ears, and discussed things with us a little more. Once again, we talked about the risk to the facial nerve. This had always been a worry for Daddy, as he loves his baby girl's smile and double dimple. Dr. L. explained that in all the many hundreds of surgeries, he has never had an issue, and he assured us he would take it very slow. He marked Audrena's ear with an X and then left.
I'm a little foggy here, but at some point, the surgical nurse came in to introduce herself (not sure if it was before or after Dr. L.). She said she would give 2 updates--once when the incision was made, and once when they were done with surgery.
Soon the anesthesiologist and surgical nurse were back to take Audrena from us. He waited patiently as I gave her a long hug and a kiss, then passed her off to Daddy, who gave her hugs and kisses. It was so hard to hand her over, so we continued to pass her back and forth for a bit. After one last loooooong hug and a kiss, I finally handed her into the warm blanket he was holding. He assured me he would take good care of her, and they left.
I sat in the recliner and cried. Randy hugged me, and we cried together. The nurse came in and saw me. She made sure I had Kleenex. At some point, she had asked if we slept much the night before. I said, "No. Not really." She promptly brought in a fold-up bed, pillows, blankets, and then made sure we had something to eat and drink. I did take the blanket and close my eyes, although it would have been impossible to nap with my worries.
We got the first update at 7:55 am. The incision had been made. I cried again.
We expected to receive the next update 3 - 3 1/2 hours later. It came sooner than that. Our nurse came in with the message, "Implant is going in. She's doing great." I said, "The drilling is done?" She said, "Yes, it's all done." I breathed a sigh of relief, and Randy and I both cried and hugged each other tightly.
Dr. L's fantastic office nurse stopped in to see how we were doing. Talk about going above and beyond! As she was leaving, our nurse came in with another update. They were finished and closing her up. The message came at 10:55 am. Dr. L. was right on the money when he predicted a 3 - 3 1/2 hour surgery.
Then came the update that they were all done, and she was doing great.
Dr. L. came in to say that he got a full electrode insertion. However, as he thought, she had a "gusher" of spinal fluid when he drilled into her cochlea. He packed it tightly with tissue, and he said as a result, two of the electrodes tested with very high thresholds. He was unsure if they would be useable. We do know that they can program around that, so it's not a big deal. He explained that when he removed her ear tube, he used a fat graft, and Audrena's ear would be draining for a few days. Then he told Randy that the facial nerve never went off and was never exposed. There would be no damage. He grinned and gave Randy a little punch to the shoulder on the way out of the room. I saw pure relief on Randy's face.
Soon our audiologist came in to complete our processor and accessory order. We ordered two Neptune processors because, in a certain configuration, they are waterproof. Besides, we thought it would give Audrena the freedom of not having something on her ear all the time. In a few years, when we're hopefully eligible for an upgrade, we will reconsider getting her a behind-the-ear processor. We had tons of color choices and accessories to order. Audrena will make quite the fashion statement!
Awhile later, our nurse came in and asked if we were ready for Audrena. Who would hold her first? Did I have to use the restroom first? What did I need to be comfortable? It would be awhile before I would get up again. I think I was a little unprepared when they brought her to me. She looked so little and pathetic with her bandage and IV. I cried a little and just reminded myself that it would all be worth it.
It wasn't long, and I had the first (and only) inkling that she might be in some pain. The morphine was wearing off, but our nurse was quick with the Tylenol. When it was time to change the bandage, I was surprised at how much her ear was draining, but it was clearish red drainage, the normal kind after a surgery. I was also surprised at how clean and discreet the incision was. He had stitched it shut, and he did a neat job of it. Also, they did not shave any of her hair. That's good because her hair is thin, so she needs all the hair she can get!
Audrena slept for a long time that first day. She was, no doubt, exhausted from a late night, an early morning, and the anesthesia. Around 4:00 we finally got her to wake up enough to drink something. She then threw up all over me. I had extra clothes, but they were at the hotel. The nurses were quick to get me scrubs so that I wouldn't have to walk into the hotel covered in vomit. Audrena promptly went back to sleep.
We ordered Audrena a dinner tray, but when Randy sat her up to eat, her chin fell to her chest as she went right back to sleep. At some point, I laid down on the fold-up bed with Audrena, thinking we would both be more comfortable. Then our nephew, Brady, came to see her. Randy's cousins Brandie and Trenton came to see her at about the same time as well. She opened her eyes just a bit, saw Brady, closed her eyes, opened them to look at him, and when he got up to come closer, she gave us the first smile we had seen since before surgery! It brought tears to our eyes. She tried to sit up, so we moved to the recliner. Immediately, she was hungry, so Daddy fed her the meatloaf we had ordered earlier. She devoured it and was mad when it was gone. She drank some apple juice as well.
By that time, we had all (Dr. L., too) decided it would be best for us to stay overnight since she had not eaten or drank much until late. We were the only patients in the hospital by that point, as the rest of the surgeries were same day patients. They moved us to a room with a hospital bed instead of a crib.
Our night nurse changed Audrena's bandage, and we began to settle in for the night. Randy and Brady went back to the hotel, and I stayed with Audrena. Probably 15 minutes later, I moved her head off of my arm and onto the bed, accidentally pulling her bandage off. I rang for the nurse so she could help me put it back on, and I noticed that the gauze was soaked with blood, and there was a clot. She called Dr. L. to see if that was normal. He said not to worry, that it might do that. So she re-dressed it, and we went to sleep.
Surprisingly, Audrena and I slept well (with the normal wake-ups from the nurse checking on her), and the bandage just had the normal drainage again in the morning. Dr. L. came in after Randy arrived, and he released us. It's a good thing because Audrena had been trying to pull her IV out, and it was pretty tough to keep her happy in the play room with an IV pole in tow! She was ready to go home!
As we left the hospital, a lady we had never seen before stopped us to ask how the night had been and how Audrena was doing. We assume she must have been a nurse or someone in the operating room. We really don't know. What we do know is that every single person at Boys Town went out of their way to make us comfortable and to show they really cared about Audrena. The level of care she received was better than outstanding.
By the time we got home Wednesday afternoon, Audrena was nearly back to her normal self. By Thursday afternoon, if she had not had the bandage, you would never know she had surgery. She played and climbed like normal.
Friday, we noticed that her incision area was getting pink. I e-mailed Dr. L.'s nurse to make sure that was normal. Dr. L. didn't waste any time calling me back. He said she had received a long-acting IV antibiotic, and it was probably ok. However, to err on the side of extra caution, he did call in an antibiotic. By Friday, the ear drainage had pretty much stopped, just in time for the bandage to come off.
Today we are just continuing the ear drops and keeping an eye on the incision site. She has started to itch her head, and we have had to make sure she is not itching her stitches. We take that to mean she is healing. Audrena is keeping us on our toes, and all is well. We are waiting anxiously for Wednesday, when we go back for our follow-up appointment and the activation!
If you have made it this far, you're awesome. These have all been details I didn't want to forget, so it got pretty long. Now I'm going to share some thoughts about the process.
We kept our friends and family updated on Facebook and through text messages throughout the surgery. We could not have gotten through this without them. It comforted us to see so many people praying for Audrena and wishing her well. The words of encouragement meant more than anyone will ever know.
Will the next surgery be as mentally draining? Yes. We're still allowing someone to operate on our baby. But at least we know what to expect. And we know how quickly Audrena bounced back. I don't have to fear the pain for her because I know that it really is controlled with Tylenol. I watched her carefully for any signs of pain, and she only showed it that one time. We feel much better-equipped to handle things. We also know that Audrena will get the best level of care in the hospital.
We would make the same decision again. The opportunity to hear far outweighs the recovery time from the surgery.
An excellent surgeon is worth his (or her) weight in gold--and more. We will be eternally grateful to Dr. L. for giving Audrena the gift of hearing. And we will forever praise Boys Town and its staff for providing amazing care.
Another random thought--Audrena's medical alert bracelet arrived just in time. I had asked Dr. L. at her pre-op appointment what it should say, and he said it was important for it to say no MRI and no monopolar cautery. I was able to order one that is engraved on both sides so that it could include that she has cochlear implants, NO MRI & NO MONOPOLAR CAUTERY, Daddy's cell phone number, and the phone number for Boys Town for information. We know that not all cochlear implant recipients wear medical alert bracelets, but we felt like it was important for Audrena to wear one. It's just the right size for her ankle, and she doesn't mess with it when she wears it.
Well, that's all I have for now. On to activation! We will be sure to post video and photos of the big occasion.
Subscribe to:
Posts (Atom)