Saturday, March 22, 2014

Pictures


Here are some pictures of our family.




Julianna and Jack Valentine's Day

Valentine's Day

Jack - March 2014


Julianna and Jack March 2014


 St. Patrick's Day 2014


Julianna and Jack - St. Patrick's Day 2014

Julianna turns 6

Happy 6th Birthday Julianna

This is how Jack's ear looked right before he lost the implant. It went from normal to this in less than 48 hours.
This is how swollen the whole implant was looking.
Jack's ear. Just before the implant came out.

Julianna lost her first tooth.

Wednesday, March 19, 2014

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.