Jack's Cochlear Implants Are Activated!

It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly.
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us.
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it.
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.
Thanks for all the help and prayers!!! Here is Jack hearing! It is short but sweet!

Surgery Over - Jack Is A Tough Little Guy

The surgery is over and we are home. Jack did great!!
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear.
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him.
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!

Dr. Roland - NYU

After tons of waiting we finally got to see Dr. Roland at NYU. I decided to drive instead of taking the train since we had a 10am appointment. I thought it would be tough to take the train during rush hour. Also , finding a parking spot anywhere near a train station  is next to impossible. So we drove in. It is 30 miles from Julianna's daycare. I checked  it with the GPS. That is about an hour by train or a bit over two hours by car. Unless you are from this area you probably can't understand that, but it is reality.

I knew where a good street parking area is and it is only a block from NYU. There is no parking there from 8 am to 9 am due to sweeping. That means if you zoom up a bit after 9 you can score a spot. I lucked out and got one. Street parking is $7 for two hours and a garage is $20 for about the same amount of time. It is more than the money though, I am not comfortable giving my keys to the guys who run those garages. Anyone who has seen Ferris Bueller's Day Off  knows what they do to the cars.

We got to our appointment a bit early. I had already done all the paperwork because they sent it to me online. I had to pay ahead of time, $600. They don't take my insurance but I am hoping I will get something back if I send the receipt in.

We saw Dr. Roland and he examined Jack and looked at his ABR results. He said he appears to be a good candidate for cochlear implants but he will have to get some imaging first (CT, MRI). He said it does not appear that Jack has genetic deafness and it is likely from an ototoxic event. In Jack's case that is the simultaneous administration of gentamicin and lasix. We will still do genetic testing to rule out that unlikely possibility, but no one seems to think it is likely.

He did feel that we should get Jack hearing aids. Although he does not think they will help him hear, he thought it would help keep his nerves stimulated. I asked him what the timeline would be for Jack having surgery. He said there is almost no wait for him, but I would have a wait getting into the NYU Cochlear Implant Center where they will do the imaging. After the imaging we will have to decide what type of equipment will be best for Jack and, secure approval from my medical insurance company. So it might be a few months before he can have surgery.

I left Dr. Roland's office feeling pretty confident that he will be able to help Jack. I called the NYU Cochlear Implant Center for an appointment and had to leave a message. I am hoping they will get back to me soon because I would really like to get it all set up.

Tomorrow we are off to Oregon for a family reunion. We are pretty psyched about it! I am hoping it isn't too bad flying so far with both kids. We shall see.