Post-Surgery - Day 1

So today was a pretty good day for Brianna. She was dying to go outside, but her pleading got her nowhere. I was able to take the bandages off. That was much easier than I thought it would be. Nothing was stuck to them, so they lifted right off. Her incision isn't too bad. Starts at the bottom of each ear, and goes up to the top of the ear, and then about 3" at a 45 degree angle toward the back of her head. Her hair is barely shaved at all. He probably shaved 3" of hair, no thicker than 1/2". So, once we wash her hair, I bet you won't even be able to tell.
Brianna didn't nap at all today. Every time she put her head down, she said that it hurt. I gave her the Tylenol with codeine. She went to sleep about 1/2 hour - 45 minutes later. She only slept for about 1 hour, and must have moved her head, because she woke up crying. I say, this has been harder than I thought it would be. She can't seem to get comfortable at all. She says that the back of her head is sore, and so is her neck, so that doesn't leave much room for comfort.
My daughter is amazing. With that sentence, I feel such amazement. I would be a whining wimp in her situation. She is just the strongest, bravest little girl ever. My daughter is amazing.
One thing I found interesting...She says that she can hear herself talk. She said that sometimes during the day she was able to hear the TV. I wonder if she is hearing it. That would just make this experience so extreme. I know the doctor said 70% chance she would retain some residual hearing, but already? Is this real? We will see. I will keep you all updated on her progress.

Activation day is set for May 20th. Just under 3 weeks!

Thank you all for your support. I hope to have a bit of time here soon to thank you all personally, but for now, GROUP HUG! And a great big thank you!

Michelle

Update on Surgery....She's home

Brianna did wonderful. I will keep this short and sweet because I am truly exhausted.

We got to the hospital at 6:00am. They took us immediately to the pre-op area. There we played cards for a while until they were ready for her. We met really quick with the surgeon, anesthesiologist , and the nurses. They let me know that a rep from Cochlear America was there, as well as the ENT surgical students that I gave authorization to view the surgery. They took her into the OR at 8:15. At 10:30 I got the first call, the doctor was working on the 1st side, and everything was going great. It will still be a few more hours. The nurse suggested we go eat. We took her advise and went in pairs (Wes and my parents were there with me). So after lunch and a trip to the gift shop, I returned to the waiting area. At 1:25, Dr Diaz-Ordaz came in, and said that they were finished, everything went perfectly, and they were able to get full insertion on both sides. YEAH! She is in recovery, and they will get us when she wakes up. 20 minutes later, she was asking for mommy. They had removed the IV before she woke up (and put it in after she was asleep), so she didn't even know she had one! She looked so tired. By 3pm, we were out the door. She had 1 dose of Tylenol because she was saying that the incision area hurt. We came home and she was hungry. So 1 pudding cup, Reese's peanut butter cup and a bowl of soup later...she was back to herself. She watched scooby doo with the captions on, and was just as happy and full of energy as ever.

She received 2 of the cutest little koala bears with cochlear implants! She is asleep with them now. The doctor said that she has about 70% chance of retaining her residual hearing, so in a few days we will know if she has any of that available. If she does, the surgeon said that she can resume wearing the hearing aid after 1 week.

These are some pictures from today, and I will update again soon! Thank you guys for your support. So far so good!

Tomorrow is the Surgery Day

So Brianna is fast asleep. She will be getting up so early in the morning. We have to be to the hospital by 6am. I received the call today confirming the 8am surgery time. She is so amazing. She is excited, and not the least bit scared. I sat her down and explained that the needle for the IV is only going to help, and that it will be done and over really quick. She seems ok with it now. We will see about tomorrow. I will update when I can after the surgery.

A note to all you wonderful people who left me support, advise and understanding, I really appreciate it. I am so greatful to you Abbie for getting everyone together when I really needed people there with me. The support was amazing. I feel so much better about this, I have had my ups and downs, and man, you guys all gave me a great "up"! I really appreciate it, I can't express how greatful I am that when I was down and really just needing someone to be there to pick me up, you all came through.

It has been one heck of a ride so far... and the exciting part is yet to come. Wish us luck tomorrow and I will report back with Brianna's amazing bravery and strength asap!

Down to 6 days...

So, we are down to 6 days. Brianna is starting to get worried about the surgery. She is mainly concerned with the IV. She doesn't like needles. She keeps asking me what she will hear afterwards. I tell her that she won't hear anything anymore, but she still asks. I wonder if she really understands that. She asks if she will hear herself talking. She wants to know if she will hear me, or her teacher. I just don't know how else to explain it to her.
Now that we are almost there, I am scared. I don't know if I should admit that or not, I don't want to upset anyone else. All the "what-ifs" are going through my mind. And of course they aren't the good what-ifs. Will this work? Will she even wake up? Will her face be paralyzed? What am I doing to her? Will she be disfigured? Will she resent me for this decision? I can barely talk about the surgery without thinking about these things. I don't really know why I am feeling these things now. I have been so excited for Brianna. Now, the excitement is gone, and it's just fear for her. I just don't know what to do with all these emotions right now.
On another note, Brianna's school called today. I guess some of the staff there wanted to do something for her and our family. So they are holding a dress down day in honor of Brianna. All the money they will raise for it will buy a grocery store gift card. That will be a huge help. It's amazing how much all this is costing us. I am so grateful for their caring and generosity. It's just amazing that people that you don't even know, can care about what you are going through.
I guess it's times like these when you really see that people care. Even strangers. I wonder if Brianna knows how much people love her and care about her. I can't wait to tell her how much I love her and have her really hear me. It's been so long since she has really heard anything. I really hope that day comes for her. (And for me). What I wouldn't give to just let her hear. I would give anything of myself to make her able to hear again.

12 days and counting down!

So we are 12 days out. Brianna had her pre-surgical evaluation on Tuesday. Everything went fine. I am glad about that. They let us know what will happen that day. I was the only one paying any attention though. Brianna was sitting on my lap sleeping! I guess having the week off of school to do nothing but play and run around has just worn her out.
So, the day before surgery, they will call us with the surgery time. She is "tentatively" scheduled for 8am. We have to be there by 6am. They will take her into a room, which is no more than a bed with a curtain around it. She will get her last check up and then off to pre-op. The nurse said that I might not be able to go back there with her. We will see. I hope that I can stay with her for as long as possible. I don't want her to get scared and not have anyone to turn to except strangers. Then she will be off to surgery. Then recovery and home! All in 1 day. She won't stay overnight unless they think that she needs to.
Brianna is very excited. She talks about her surgery daily. I can't imagine where she gets the braveness and strength that she has. I am sure it's not me, I am petrified. I am more than petrified, is there a word for that? Well if there is, multiply that by 100 and that's me. I just want the day to come and go with no problems. Then I can worry about the next step.
So, 12 more days to go...

20 Days

It is amazing to me how calm Brianna is right now. She knows there's 20 days left until surgery, and yet every day is just another day to her. I can't imagine the world that she lives in every day right now.
I spent most of my lunch hour today watching CI activation videos on You Tube. Gosh they are so emotional. Each time I watch them, I end up crying. The one that I watched today was a woman who was activated, and she couldn't hear words, but she could hear the syllables. She was visibly moved with the experience. When her CI was first turned on, she jumped and started to cry. I can't imagine how overwhelming it is. Going from nothing to these foreign sounds, noise even.
I hope that Brianna has this amazing experience, and she starts to understand what she hears quickly. I know that it will take time, and I try to keep in the back of my mind that there is a chance for them to fail. I just want her to be the exception. I want so much for her. The few weeks of waiting for activation will drag along I am sure. I just hope that she doesn't get frustrated along the way. She's one tough cookie. I know she will take this just like she does everything else and she will be fine. I just hope it is better than fine. Better than normal. Better than what she has now.

22 days and counting!

So the surgery is 22 days away. Brianna asked me today about how long she will be out of school. I let her know that we are planning on her being out for 1 week. Hopefully she will feel all better by then. She will miss gym again for a few months. She broke her arm last summer and was out of gym classes until December 2007. Now she will be out of gym again. She definately does not like being taken out of class. But maybe that will give her a bit more time to learn some signs with Mrs. Sara. We will see how everything plays out.
I have to keep explaining to people that this is not an "instant fix". For some reason, people seem to think that she is going to go in for her surgery and come out hearing everything clear as day. I don't know, maybe it is just because I have done all my research, and I know what is going to happen. But I just think "duh". Why would people NOT do this surgery if it was that simple. Oh today I am going to go in for a bit of surgery and come out with no hearing loss at all. I am happy that people are concerned, or at least remember that we are going to be going through this, but geeze, it makes me feel like I am getting some second rate surgery for Brianna. Oh we can't afford the miracle insta-fix operation. So she gets the CI surgery.
Ok, enough frustrated whining! Brianna seems so excited. She talks about it every day. I really hope that I have done a good job explaining the process to her. She seems to really understand that she will be completely deaf for 4 weeks, and then once activated, she may or may not hear sounds again. I have tried to tell her that she will have to learn to hear all over again. I can't really give her too much more than that because I haven't experienced it. I guess we will just have to go through all this together. Good with good and bad with bad.
The most important thing to me is that Brianna is happy with the decision that I have made once she is older. Obviously at 7 she can't make the decision for herself. I just hope that I have made the decision that she would have made for herself. Time will tell. She is a strong, strong girl. She will be fine. Right?
A note on me right now. I am in a good place today. I seem to be on this emotional roller coaster. Some days (like today) I feel completely at ease with this decision. I have a feeling that it will work out for Brianna, and I am almost excited. Then I have days where I am scared to death, unsure and nervous. The other day I actually thought that maybe I ordered the wrong implant. For some reason they all blurred together, and I was just distraut over the functions and differences in them. I called the ENT and confirmed that I did infact give her the correct order. Whew. My mind was playing tricks on me. Stress maybe? I really need this to work out for Brianna. I go through the day, almost every day wondering if the other kids at school pick on her, or don't want to be friends with her because of her hearing loss. She hasn't been invited to a single birthday party, and I wonder why? If I really think about it, she is only in 2nd grade, and she has plenty of time for parties and friends. I spoke with Brianna's teacher about this very thing. She said that the class as a whole is completely understanding of Brianna's situation, and they are wonderful with helping her if she did not hear an instruction. On that point, I felt better. So here's to a good day. We will see what tomorrow brings. I really can't wait until my parents come up here to help out. The family support will be great. I won't lie, this year has been the hardest year for me, emotionally anyway. I can't wait to have them here to just be here. There's definately a difference between talking to family on the phone, and having them here in person. (We live in NY, my parents live in GA).
That's enough for tonight. We will see how it goes....

Time goes so slow when you are waiting

We are waiting for Brianna's surgery date to come. There isn't a day that goes by that Brianna doesn't want to talk about the surgery. She is so excited. One thing that is really bothering her is that she won't be able to hear anything afterwards. I don't think she really understands this part of the process. She asks me daily how she will do in school, and if someone will walk her places that she needs to go. She has Mrs. Sarah with her daily to help her through it all at school. Let me tell you, just having someone there for Brianna has made such a difference. She comes home from school less tired that she used to. She has so many more stories and bits of knowledge to share with me every day. Mrs. Sarah is a teacher that is studying to be a teacher for the deaf. She is working side by side with Brianna now. When Brianna has questions or trouble, she is able to ask right away, and get the answers. Brianna's 2nd grade teacher is wonderful, but I can't imagine how hard it is to run a classroom of 7 year olds, and on top of that, 1 who is almost deaf. She really is amazing.
Back to the topic. Brianna's favorite question to ask me is if she will get a big bed to sleep in. I let her know that she will be in a hospital bed for the day, but she will be so sleepy that she won't care much if it is big or small! She is so optimistic about this whole thing. She is just amazing. I am not to the point yet where I am scared out of my mind. I will get there I am sure. The other day I really just broke down. Questions were going through my mind. Is this the right decision? What if I do this, and it doesn't work? Will I be ruining her life forever? What if she resents the decision that I made for her? What if, what if, what if...
I got over that in about a day. I realize that without the surgery, Brianna will be deaf. It will be a matter of months, not years. She knows a little bit of sign language, but not enough to get by with it. Not to mention none of my family knows it, or her daycare, or really anyone that is involved with her. We could all learn it, but there is so much out there that she can't experience without sound. This past fall, I enrolled Brianna in a hip hop dance class. I wanted her to experience music and dancing, and all the joy that it can bring. She loves it. She really enjoys dancing. She explained to me that she really can't hear the music anymore, but she can feel it in her feet. She tries her hardest to keep up with all the moves. It really is just beautiful to watch her enjoy music so much.
So today, I am doing ok with the decision. I guess. We will see where we sit tomorrow. But Brianna is the one that matters. Hopefully this will work as well as the doctors seem to think it will. From there, hopefully she will be happy with my decision for her as she gets older and starts to understand it more. Things can only get better, right?

Brianna's History

At the end of her kindergarten year (2006), I received a note from the school nurse. Brianna had failed her standard hearing test at school, but not to worry she passed the re-test. I called the pediatrician and asked her what this could mean. She said that Brianna might have just had an off day, or it could be something more. Lets make an appointment with the audiologist.
Every summer Brianna and her sisters spend the summer with my parents in Georgia, so I made the appointment for August when they got back from vacation. We went into the appointment, not realizing what we were about to hear. Brianna has profound sensorineural hearing loss in her left ear, and mild loss in her right ear. What? Boy, did I go straight to denial and guilt. What did I do? How did this happen? How did I not know?

From there, we went to the ENT. She recommended a hearing aid for the right ear. She told me that there wasn't anything that could be done for the left ear, a hearing aid would not help. (I am still naive at this point, and very uninformed as well). So we went for a hearing aid evaluation. Welcome to I am a divorced mom, supporting my kids on my own with little to no help from my ex-husband. I work and carry the insurance, the insurance that would not pay for the hearing aid. So a bunch of phone calls, crying and groveling for help from different places, I raised $1200, the rest I saved up and we got her a hearing aid. Bright pink with a purple ear mold.
The hearing aid seemed to do wonders. She received it on October 18, 2006. Her FM system at school came in during the first part of 2007. From there, it seemed like this is something we could deal with. She was doing well in school, and she was meeting once a week with the hearing itinerant for the school district. She was getting regular (every 3 months) audiograms, and things were staying about the same.

Everything was going great until this past Christmas season. I noticed that Brianna would not respond to me unless I was looking at her, and she was looking at me. I made an appointment with her primary physician, the ENT and the audiologist. Her primary let me know that she appeared healthy, no ear infections, no apparent problems. The ENT suggested another hearing test, and a hearing aid test to make sure the device itself is working properly. This hearing test let us know that Brianna's hearing has not only gotten worse, but the right ear (what Brianna calls her "good" ear) was now showing a profound loss. The wonderful audiologist (Marie) suggested that we go to their other office in the city, and have Brianna tested by another audiologist. She also suggested that we meet with the CI person at this office.

Cochlear Implant? Why? What? When? And here we are. Now we are on the Cochlear Implant journey. We went in to the CI appointment on Feb 14th, Brianna was dressed up in her valentines day dress, black velvet top with a big poofy pink skirt. She did great, Michelle and Marie did the audiogram, then Michelle spoke with us about the CI. She felt that Brianna is a great candidate because of her loss at the current time, but also because she has been able to hear in the past. So we move forward. We met with the ENT/CI surgeon (Dr. Diaz-Ordaz) on March 3rd. He agrees, bilateral is the way to go. He was wonderful, he answered all my questions and Brianna's questions too. Her questions revolved around colors of the parts and how much hair he will shave. On March 5th, she had her CT Scan and MRI. On the 10th she had her meningitis vaccine, the 15th was her speech evaluation (she is within normal limits) and one more audiogram. On Tuesday, March 18th, 2008, I got the call. Her surgery will be April 29th, 2008.

So Brianna picked out her pink processors (she gets 2 for each side, so we are also getting a beige set). We are going with the Cochlear Americas Nucleus Freedom. In all honesty, the deciding factor on the brand was Michelle telling me that they have seen more failures with the Advanced Bionics, and the doctor confirming this. They both said that it was still a great company, blah blah blah. I don't want something that has a greater chance of failing in my daughter's head.

The decision to go bilateral was mine. I originally wanted to just to the left ear (the "bad" ear in Brianna's terms). What I figured was that if it did not work, no harm, since she wasn't hearing with that ear anyway. But then I did more research. Thank you Internet, Thank you! I read a few blogs, personal stories and research studies. What I found (in my opinion) was that it would be better to implant the ear with more recent hearing. The success rate would be greater, and rehabilitation would be less time. She would probably get more benefit from the right ear than the left, in a shorter amount of time. Then I was thinking, well, if this works, I don't want to put her through this all over again to do the other ear. Then I read about people with the bilateral implant, how impressed they were with the range of sound, and the quality. My decision was, I want the best for Brianna. She is so intelligent, so beautiful and so strong. I want her to have all the advantages that her sisters have. I don't want her to suffer because I did not make the decision to do all that I could for her. Bilateral will give her the most benefit, hopefully.

So this is the start of Brianna's journey. Thank you to Abbie for all the inspiration. I have read your blog a million times, and you are the strong and intelligent woman I want my Brianna to be like. Also thank you to Sam Spritzer. I have read your blog as well, and you have provided so much information. Brianna will have the same doctor you had, and even though I don't know you, just knowing you went through this same procedure with the same audiologist and surgeon, for some reason makes me feel less nervous. And all the rest of you who have made the decision and shared your experience with the world, Thank you! Without all the knowledge and opinions you have provided to me, I would still be researching, scared, and just left with a lot of unknowns and what ifs. I hope someday we can help someone with our experience.