May 5, 2009

Last Thursday Michael and I headed down to Miami to meet with the anaesthesiologist for his eye surgery next Thursday. Luckily I had already gotten the pre-clearance from the Pediatrician, even though I was told I didn't need it until the day of the surgery. They needed it at this appointment. We had to wait a long time, which is hard with a very active toddler :) but I brought his 'bear leash' and let him walk around the hallways. Everybody loved it!!! Robert calls him Frankenstein because he puts his arms forward when he is trying to run. So cute!!

Finally we met with an RN to go over his medical history. I brought the NICU discharge papers and asked her if she needed to make a copy. "No, not necessary" she said. We went back in time chronologically and of course she needed the NICU papers by the time we got to her NICU history :) The nurse was very complimentary about the information I had about my son. She was surprised how many parents don't know anything, or don't seem to be interested. Weird!
Then we had to wait for the anaesthesiologist who basically asked me the same questions over again!!!

I had a few more questions for the surgeon and he called me back within a minute after he was paged. So what we know now is that he is going to go under general anesthesia. They will have to intubate him (ugh!!) and then they will measure both eyes very carefully. After that they will decide if they have to operate on both eyes on Thursday. They are definitely going to operate on his right eye, because the damage is more sever in that eye. The surgery could take up to 3 hours. If they decide to operate on both eyes, he will have to wear patches for 24 hours. We are not looking forward to that. I imagine that he'll be scared, angry and he is very strong, so he will try to rip them off his head. Then the next morning we would have to go back to Miami to see how the surgery went. It is going to be a very interesting few days!! I am so nervous!!
I cancelled all his appointments for this week. I don't want him to catch anything. I was happy that the surgery was in May, because it's after Flu season and of course, the Swine Flu has to pop up now...

I read that about 1 in 25000 children have juvenile Glaucoma, and yet in all the support groups, I haven't found anyone who has been through this or knows someone who has been through this. So I guess the scary part is that we don't really know what to expect. Dr. Cardone, his ophthalmologist said that every child is different, so it is difficult to give you and idea of what to expect. Like I said before, there is a 90% success rate that the surgery will be successful. That is pretty amazing considering Michael beat the odds of surviving a 5% survival rate!!!

Like Aunt Lesley said, we should have named his middle name: Lucky :)