Another adventure under our belts! We arrived at the Cleveland Clinic around 7am and unfortunately the surgery before Joey's ran quite a bit longer than was anticipated and he didn't end up going back to the operating room until about 10:30. As usual, he was Super Joe and Tom and I tried to keep him distracted from the rumblings in his tummy.
With both sets of grandparents waiting out in the main area we had constant coverage for bathroom breaks and a quick cup of coffee.
At some point while we were talking to the surgeon, one of the nurses did this:
A magic marker dot above each eye to be operated on. It was hilarious because neither of us noticed her doing it and when we finally did notice we were like, "Did you put those dots on his eyes?"
The waiting is usually the hardest part, but Joey has such an incredible personality and it was just a chance for use to hold him and play with him for a couple of hours.
When it was finally Joey's turn we had a final meeting with his surgeon and it was decided that we would have the bottom two muscles on each eye cut and reattached during this surgery and then in about three months we will come back to do the top two muscles on each eye. Apparently, the top muscle procedure is more invasive in that they have to not only cut the eye muscle and reattach it, but they also have to cut it, remove part of it to shorten it and then reattach it. Joey's doctor wanted to go the more conservative route and just do two yesterday.
For the first time in any of his surgeries/procedures, we were told that one of us would be going back to the OR with him to help keep him calm while they started the anesthesia. I decided to go (only one parent is allowed back) and donned the blue jumpsuit, mask and hair net.
Joey had a wonderful time pulling off my hair net the entire walk back to the OR. The OR was super chilly and it seemed like such a large room with so many people for just eye surgery. I think I counted six people in scrubs. They had me lay Joey down on the operating table and then they asked me to sing to him and comfort him while they put the mask on his face. He struggled. I struggled. It was hard to watch, but they told us it wasn't for the parent's sake, but for the kid's sake that they have one of us go back. I hope that he felt some comfort seeing mama as the last person before he went under.
The actual surgery ended up taking almost just an hour and we first went back to meet with the surgeon who said that everything went really well. We went back out to the waiting area and just about 10 minutes later the Child Life Specialist came out and said we could go see Joey, but to be very quiet because he was still sleeping.
The only way you could tell he had just had surgery was a tiny tear of red blood in the corner of his eye. Other than that, he looked like he was just taking a lovely mid-summer's nap. We settled in thinking he wouldn't be awake for awhile and the nurse told us that if he wasn't awake in an hour that we would try to wake him up.
We both settled into a chair and stared at him.
One of my friends said that I looked so calm in the pictures, and I was calm until about two minutes after this picture was taken which is when the pictures stopped and the you know what hit the fan.
I hate to say it was like out of a horror movie, but literally he went from being sound asleep like this to flipping over, screaming bloody murder and coughing like he was gagging. We both freaked out. He was thrashing around, rubbing his eyes (ugh-- the one thing we really have to try to keep him from doing), bawling, screaming, coughing--it was a nightmare. I told Tom to grab the nurse and she was right in. Apparently this is why we wanted him to try to quietly wake up. He woke up like a man on a mission to find out who messed with his eyes. He tried to chew his IV line off his arm. I mean seriously-- the next time someone tells me the old misnomer about how people who have Down syndrome are so happy all the time, I might have to recount this story for them. Joey. Was. NOT. Happy. At all. He was ticked off.
He finally took a bottle of thickened water, the nurse gave him some more pain medication through his IV and he settled down for a little bit. That lasted for about 20 minutes or so and then he started crying and would not stop for over an hour. The nurse told us that the older kids say that this procedure makes you feel like you have sand in your eyes for a week or so. His little eyes had blood-stained tears and they were swollen and red.
Eventually he finally settled down right after the doctor sent in a prescription for Codeine that we never ended up using. Once he was a little calmer we finally got him in the car and home.
Today he doing much, much better. Not really excited about having to do this to him again, but we will do what we have to. I just wish I could do it for him. In the meantime, we are putting in his medicated eye drops twice a day and trying to keep his eyes clean. The right eye seems to be oozing some green icky stuff, so we are going to keep a close watch on that for signs of an infection.
In the meantime, thanks to every single person who sent prayers and love to Super Joe!!! For the snacks, the cookies, the turkey chili, the wine, the chicken and stuffed potatoes, the yummy BBQ meal, the sweet treats, the moral support and the love for this little man-- we feel so incredibly blessed and fortunate as we celebrate Joey's successful surgery along with our nation's Independence Day.
Happy Fourth to you and your family! How are you going to celebrate?