Friday, November 26, 2010

a good decision

When we met with the surgeon Monday morning, he asked us whether we wanted Lucas to be implanted with the N5 (sticking with the same company as the old ear), or whether we wanted an AB (different company) implant in his left. We joked about it for a few minutes, thinking that it would be silly to have two different devices, but he told us that some people seriously do have one ear from each company.

I thought about it for a moment (and really just a moment), thinking about the possibilities of having the benefits of both devices. Advanced Bionics implants are advertised as giving increased musical benefit to recipients, which I see as a big drawing point. We originally chose Cochlear, mostly because of the versatility of the babyworn processor to go easily between being clipped to the body and being worn completely behind the ear. We've been pleased with our decision, but I'm sure we would have been happy the other way around too.

On Monday, we decided to stick with status quo, as I've been dreaming of the Nucleus 5 device ever since it was released. I also am a big fan of symmetry. Having 2 different external processors brings more attention to his ears, in my opinion.

Well, I believe we made a good decision. The day after Lucas's surgery, AB voluntarily recalled their HiRes 90K implant, and retrieved all unimplanted devices in distribution. We would have missed the recall by a day.  Apparently there have been 2 reports of recipients experiencing severe pain, overly loud sounds and/or shocking sensations at 8-10 days after initial activation. You can read the press release here. This may have caused Lucas to be explanted. I'm not sure what they would have recommended, but I'm very thankful that I don't have to deal with another element of stress in this whole process.

I've heard many, many good things about this company, and I sincerely hope that the problem gets solved soon, for both the company and the recipients.

Thursday, November 25, 2010

a Thanksgiving message

This message is brought to you by our little turkey himself!

We spent a relaxing Thanksgiving day today at my parents' house. Little Lucas is back to his joyful, silly self. We are managing his pain with acetaminophen now. He got to take a bath today too! Lucas had a busy day! He...

... watched Daddy carve the turkey ...

... broke the wishbone with Daddy ...

... ate lunch with a turkey on his head ...

... showed Opa Mommy's new toy ...

... played intently at Oma's train table ...

... spent time with his (and my) Nanny ...

... and was a good sport while posing for lots of pictures ...

We are so thankful this Thanksgiving for everything in our lives... our health, our jobs, our new home, our loving and supportive family, and our beautiful son.

It's hard to imagine what life would be like without Lucas. At his first Thanksgiving, we were anxiously anticipating his 1st cochlear implantation. At his 2nd Thanksgiving, we were celebrating the miracle of his access to sound. This Thanksgiving we are celebrating successful 2nd implantation and are awaiting the arrival of surround sound to augment his already awesome ability to listen and speak. I don't think we can top this next year. I will be content with a quiet holiday, and I look forward to looking back at Lucas's 1st bilateral year. 

We continue to be unbelievably grateful for all of the healthcare professionals who have shaped and continue to shape Lucas's outcome. From his weekly therapists, to the audiological and education team at CHOP, to his talented CI surgeon, we feel very lucky to have such amazing professionals working with him. Cochlear implants change lives. We are thankful today, and e.v.e.r.y d.a.y for this medical miracle. 2nd activation is in 2 weeks, and counting!

Tuesday, November 23, 2010

second time around

Yesterday morning started very early, just like we like Lucas' surgeries to start. We left our home at 4:30 for a 6 AM arrival time. By 8:10, Lucas was being taken back to the operating room. It was 4 hours... 4 long hours before we would see him again. Nate and I decided to go to the cafeteria and grab some breakfast, because we knew it would be a long morning.

We returned to the waiting room before 9 AM, just in time for our first nurse update. During the second update we got, she reminded us that she wouldn't be entering the OR from that point on because of the ear being exposed, and the risk of germs. She got a thumbs up from the surgeon though, so we took that as good news. At around 10:30 AM, we spoke with the audiologist who tested the implant. He reported that it was working great and the surgeon was just closing up. We got some relief from that news. Around 11 AM we saw the surgeon. He said that surgery went as expected - he was able to get a full electrode insertion, but he also hit a CSF gusher, just like last time. He was not surprised by it. Luckily, he was able to manage and control it quickly, so it shouldn't be a problem.

After we spoke with the surgeon, he told us that they were taking an x-ray (to make sure the implant was placed properly), and then they were going to do the heart echo. Yes, another heart echo. Because of Lucas's heart condition, he has a heart echo every 6 months. He had one in June, during his trigger thumbs surgery, so I decided to call his cardiologist and inquire as to whether he wanted to do another echo under sedation. He decided it was a good idea, so we scheduled another "two-fer". Hopefully we'll get a good report.

We got to see Lucas around noon, and he was discharged at 1:00. We were surprised that Lucas's head was not wrapped, like it was last time. They wanted him to be able to wear his processor, so they didn't wrap it. I was concerned that his incision was exposed and that he would pick at it, but so far, so good. It is well sealed with Dermabond.

Lucas never really woke up before we left, and he slept the whole way home. The nurse said he only needed to be "wakeable", which he was. She kind of rushed us out of there. We were worried that he would throw up on the way home, but he saved that until he got home, but certainly made up for it. The anesthesiologist gave him "double" anti-nausea medication, but it definitely wore off by the afternoon. Lucas slept on and off the entire afternoon/evening, only being awake for about 10 minutes at a time... long enough to beg for juice and crackers, throw it back up, and go back to sleep.

The discharge instructions said to call the ENT resident if Lucas threw up 3 or more times at home, so I did. She was very nice, and called in an anti-nausea medication to our local pharmacy. We couldn't give Lucas his pain medication or antibiotic if he was just going to throw it back up! CVS told us it would be an hour before the prescription would be ready, so I gave them my "sob" story, and they had it ready in 20 minutes. I'm glad I spoke up. We gave him the med, but didn't wait long enough to give him food/drink/medicine, so he threw it up anyway. But, that was the last time (7:30 PM) he has thrown up, and he ate pretty well today.

He actually slept through the night, but with me sleeping next to him, and both of us on the floor of his bedroom. I set up a little bed area for me, and he wouldn't leave my side, so that's how we slept. He woke up at 6:45 AM, and went strong all day, playing, walking and running. I have not noticed any increased balance issues or dizziness, so we're really grateful for that. I'm very happy to report that Lucas is pretty well back to normal.

Yesterday we really felt the effects of major surgery, but today you would barely know it. Other than the fact that Lucas would not take a nap today, even after 2 consecutive car rides during which he fell asleep, he had a great day. He expressed to me that his ear hurt when he woke up this morning. I was surprised that he was able to express that to me so well, but also very thankful.

Yesterday was no walk in the park. My stress and anxiety were really high. I couldn't concentrate on anything for more than 3 minutes at a time. I spent a lot of time pacing, and updating my Facebook status on Nate's iPhone, which is time consuming because it's not my phone. Several day surgery staff told us that we looked familiar. You know you're there too often when... This surgery was just different than the other surgeries though. We knew what we were in for, we knew what we were up against, and we knew what we had to lose. So far, the outcome has been as good as we could have asked for, minus the gusher. We are unbelievably thankful for that, and attribute it greatly to all of our wonderful local family/friends and our worldwide CI friends, who were praying for and thinking of our little Lucas. With 5 surgeries, 2 sedated MRIs and 3 hospitalizations in less than 3 short years, we're hoping this is our last major procedure for a long time.

Lucas's incision site looks great right now, and I believe it will heal quickly. The N5 implant is remarkably less noticeable on his head than the Freedom. I can barely feel it! The Freedom protrudes. The N5 looks much for comfortable. But what do I know.

Now the countdown begins! Activation is scheduled for December 9! At that time, he will get 2 N5 processors (one intended for back-up), but he'll wear them on each ear! He'll then have the Freedoms as back-ups. He'll be hearing with 2 ears before his 3rd birthday and before Christmas! YAY!

Monday, November 22, 2010

long day

Here's the short version... tomorrow I will write a longer post. Hopefully Lucas will be feeling better then, and I will have gotten some rest.

It's been a very long, rather stressful, but successful day. We are home. We were discharged at 1 PM. The surgeon was able to fully insert the N5 electrode array, and it is working appropriately. It's been a long afternoon/evening though, because Lucas has not been able to keep anything down. He wants to eat anything and everything, but much to his dismay, he can't. I'm happy to report that he can walk though, although he's a little bit wobbly from the anesthesia. I hope he has a good night, and I'll write more tomorrow. Thanks for all of the prayers and well wishes.

Sunday, November 21, 2010

meet Graeme

Meet Graeme:

Graeme was born at Build-a-Bear last weekend. He, of course, was named after another famous Graeme. Graeme got two "cochlear implants" last weekend too.

Meet Lucas:

Lucas only has one cochlear implant, but will be getting one tomorrow, just like his bear friend, Graeme.

I can't believe this day has finally come. It's been an emotionally rough week for me leading up to this point. For every good reason I can give you for getting the second implant, I can give you a good reason for not.

What it comes down to is this. We want the very, very best for our son. We want him to hear the very best that he can, to make the rest of his life easier for him. We don't want to ask ourselves for the rest of our lives, "what if...?" If we're going to do, it has to be now. So, here we go. I can't wait until it's over. Please pray for an uneventful day, strong, steady surgeon hands, and a quick recovery.

Lucas will be a bilateral bionic boy tomorrow. Wow.

Saturday, November 13, 2010

giving back

Lucas is not thriving right now just because he got a cochlear implant. His access to any sound at all is made possible solely through the miracle of the cochlear implant, but his ability to discriminate that sound and mimic what he hears through speech is all thanks to the hours upon hours of therapy he has participated in.

Last year I was asked to be my school district's United Way representative, because Lucas receives services from United Way funded agencies. I was thrilled to share his story, and share the miracle of the cochlear implant. I wanted to show people that deaf children really can listen and speak, and what early identification and aggressive intervention does for young children. Lucas accompanied me to many district faculty meetings, but couldn't come to all, so I made this video to chronicle his journey.

Our local United Way agency caught wind of this video and asked if Lucas could be the star of this year's campaign video. We were really happy to continue to share his story with an even broader audience this year - the whole county. It's been really fun meeting strangers who recognize Lucas, and hearing from friends who have seen Lucas's video. One friend in another school district told me that they exceeded their donation goal for this year, thanks in part to Lucas's story.

Lucas is my miracle baby. He is an inspiration. He has changed my life. I hope his story touches yours.