Setbacks

One of Jack's cochlear implants had to be removed. I have heard this phrase many times, "well, it is a very rare complication but......."
I noticed that Jack's left cochlear implant was looking a little more prominent. I was attributing it to his plagiocephaly (abnormally shaped head) but I was watching it. All of a sudden it was looking very swollen. I called NYU a number of times and they kept saying that they would get back to me. They never did. Then the incision line starting looking extremely infected. I took pictures of it all and emailed it to the nurse practitioner and the surgeon. The nurse practitioner emailed me back and said they should be able to see Jack in a few days.
I knew it was pretty bad and I was pretty worried that Jack was going to get septic or meningitis. He did not have a fever and he was acting fine but I was getting frustrated and made an appointment with my pediatrician so he could at least get antibiotics. Finally the surgeon called me back. He had seen the pictures and he said to get Jack into NYU and he would get him on IV antibiotics and operate in him to clean the infection out. He hadn't seen the email because he was getting ready for three surgeries that morning.
My friend Cathy said she would take care of Julianna and we went into NYU. They are pretty efficient there. They got him on the antibiotic pretty quickly. Dr. Roland came to see Jack in between his surgical cases. Jack went into the operating room at about 5:30 pm after Dr. Roland did three cochlear implant surgeries.
He came out to see me after the surgery and said he was unable to save the implant. He said it was very rare for it to get infected over two months after the surgery but it does happen sometimes. He said we can so another implant in about three months. The cultured the infection and it was a staph infection.
Jack had great difficulty during the surgery. His oxygen saturation went down to 72. They stopped everything, gave him breathing treatments and were able to get his breathing back to normal. His poor lungs have taken such a beating.
We stayed at NYU overnight and came home the next day. We saw Dr, Roland the next week and then the week after when he removed the stitches. We scheduled his next surgery for May.
It is pretty frustrating having setbacks. I sometimes feel like Jack can't catch a break. He is a happy guy though. He was clapping hands on his way into the operating room and was laughing and happy pretty quickly after his surgery.

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!!!