Wednesday, April 30, 2008

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!


Tuesday, April 29, 2008

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!

Monday, April 28, 2008

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!

Wednesday, April 23, 2008

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.

Thursday, April 17, 2008

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...

Wednesday, April 9, 2008

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.

Monday, April 7, 2008

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....