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!!!

NYU Moved Up

NYU called me and moved our appointment with their cochlear implant surgeon from 7/29 to 7/1. I am thrilled!! The doctor is J. Thomas Roland. I can't read much about hearing impairment without his name coming up. The have the premier cochlear implant center on the east coast.

The FDA requires infants to be 12 months old before getting a cochlear implant, unless their deafness is caused by meningitis and then it is 6 months. Meningitis causes the cochlear to harden so time is of the essence to those babies. NYU frequently gets FDA waivers in order to implant babies earlier. I am hoping they will be able to do that for Jack since earlier is best for language acquisition.

I really don't even know if Jack will be a candidate for this surgery. He will have to have an MRI and possibly more testing before we even know if he can get them. I am also hoping they can implant him bilaterally in one surgery, which is relatively new. There is also a possibility my insurance won't even cover them. I called my insurance since there was no one listed on the plan as a cochlear implant surgeon. They told me to go to the appointment and have the surgeon's office call them and they would work something out.  I had a similar situation with my breast reconstruction and they ended up paying for it. A lot of parents have had big fights with their insurance companies because they were considering cochlear implants to be cosmetic. In the end most of them won and their kids had the surgery.

I am reading more and more about this surgery and deafness in general. They usually like to get hearing aids on the babies as soon as possible. They were not able to do the molds for Jack because of the fluid in his ears and they wouldn't do the surgery for the tubes before he was six months old. The hearing aids are not covered by medical insurance, but Early Intervention will pay for them. After Jack's surgery the audiologist told me it would be about six weeks because all the paperwork had to go through. I think that is a really long time and I know Jack finished all the Early Intervention evaluations and I did fill out tons of paper work. I have a meeting with Early Intervention and all the evaluators on Tuesday. Julianna has her kindergarten  screening on Tuesday morning so I made the Early Intervention on the same day in order to cut down on taking days off.

Jack is not likely to hear anything with the hearing aids. They still give them to profoundly deaf babies because it will keep his sensory pathways open. That will help to keep his auditory nerve stimulated and that should help him when he gets his cochlear implants. They are saying that in the best case scenario he might be able to hear a siren with the help of the hearing aids.

Here is an interesting video presentation about cochlear implants. It is done by Dr. J. Thomas Roland who is the doctor I am taking Jack to.
http://www.veomed.com/va021470552012

It is a little long, but very informative.