First Surgery

It's Finally Here...
Although it seems like many months, not just 2 weeks, since Ryan's diagnosis, surgery day finally arrived. To make sure he was well enough for surgery, we took Ryan to his pediatrician to make sure he was not developing another sinus infection.
Having been in and out of doctor's offices more in the last week than in his entire life, Ryan was happy once he realized he did not have to have the "drops" at that visit! She did inspect his eye (and let me look through the pin-hole) and sure enough, you can see how yellow his eye is (the other eye has the normal red -- hence the "red-eye" in photos). It's like looking into an eye full of pollen (it is peak pollen season in Atlanta...) She confirmed that our surgeon is top notch and felt confident in our remaining in Atlanta for the procedure and with doing the Avastin injection, which is only recently being used for Coat's patients.

It almost didn't happen..
We were told that we'd get a call before Friday with a surgery time. When I hadn't heard by noon on Friday (although I was chained to my desk for fear I'd miss the call!) I called the hospital and was told Ryan wasn't on the already booked surgical calendar. This is not what an anxious mother wants to hear. After some begging and pleading, they added him to the end of the day - at 2:00.

Really? No food?
Now I know why they typically schedule children's surgeries first thing. It's not easy convincing a 2 (almost 3-year-old) to put down the pop tart and have a nice glass of water for breakfast. And lunch! I finally found a place to take him without food -- the car wash! Special thanks to a good friend who brought her 3 year old to hit a few golf balls with Ryan outside to help pass the time! Ryan absolutely loves to hit golf balls and Tiger Woods is his hero! We took extreme measures to lock Ryan out of the pantry -- Brian tied it shut with an actual belt. Ryan was not happy about that. Luckily, an almost 3-year-old boy believes that the pantry doors are broken.

Finally Made It!
As luck would have it, Emory's graduation was ending as we were nearing the hospital on Emory's campus with a very crabby child begging for snacks. The traffic was touch and go for a while -- we almost abandoned the car and walked! Lucky for us, they offer valet parking. We arrived on time and our luck turned when we saw a familiar face. Brian's former law clerk is now a nurse anesthetist and got on Ryan's case when she saw his name. She was wonderful and made us feel so much better, just knowing she was with him. Everything about Children's was impressive. We are so fortunate to live in a city with a hospital like Children's -- we'd never given it a second thought before now since we've only driven by it. It goes without saying that we will be recurring contributors!

The Prep.
Ryan was not happy about putting on the hospital gown and surgical cap, especially after 3 set of eyedrops (2 each time) were administered in both eyes. Uggh -- the drops! Once he took the dose of liquid anesthesia, though, he went on to la-la land and did not care what he was changed into! He was so cute that it was hard for us not to laugh and cry at the same time. Brian (you can always count on him for a good sense of humor) asked where we could get more of that stuff for bedtime! Once Ryan was back in the OR, the doctor came to tell us that he'd done an initial exam under anesthesia and found the disease to be pretty widespread, but confirmed that Ryan has a classic case of Coat's. We were his 12th surgery today - all of the prior surgeries and exams for retinoblastoma patients as young as 7 months, so as sad for Ryan as we were, and feeling like all the other scared, helpless parents, we felt fortunate to be there for Coat's. He told us the gameplan would be the avastin injection and chryotherapy.

The Surgery.
The procedure lasted about an hour, after which the doctor came to tell us that it went well and they were able to do the Avastin injection and perform chryotherapy on about 25% of the leaking blood vessels. Trying to get them all at one time is too much trauma on the eye. He had told us beforehand that sometimes the first surgery "triggers" leaking in others and so the condition can get worse before it gets better. It's a wait and see approach on both that and the effects of the avastin injection. He confirmed again that Ryan has good peripheral vision in that eye, but didn't sound optimistic about saving much central vision. Again, the goal is to save the actual eye, but saving some vision is ideal, even if it is not correctable.

The Recovery.
Well, we were warned about the post-op recovery! When he was brought back to us after surgery, Ryan was unhappy, to say the least! He was inconsolable (or as his big sis would say: "freaking out") which we understand is not unusual, but broke our hearts more than anything we've been through thus far. After about 45 minutes of flailing and holding the eye, he fell asleep such that they were able to remove his IV and we took him home. He slept the entire way home and transferred right to the couch. We hope he sleeps through the night so that his recovery is underway overnight. He hasn't opened the eye yet, but we understand he'll be pretty sore for the next day or so. The torture for him (and us) will be the 4 times daily antibiotic drops in the eye for a week. We're not above bribery! Good thing his birthday party is this weekend -- we're using that for all it's worth!

What's Next?
We take Ryan back in 2 weeks for a post-op checkup, to ensure the eye is healing properly and to assess the benefits from the avastin injection and status of the blood vessels treated with chryotherapy. He will do his second round (not sure if it will be only Chryo or another avastin shot as well) in 8 weeks. We appreciate this aggressive approach because the sooner we stop the leaking, the more vision is potentially saved. Unfortunately, this condition is likened to a hose in that you can patch a leak but it can spring a new one.

Our Continued Thanks.
We simply cannot get over how unbelievable our family and friends are. The outpouring of prayers, well wishes and support are truly what is keeping the wheels on!

Thank heaven for medicine.
Ryan will not be happy about this when he's old enough to read this, but here are photos of Ryan just after he swallowed the anesthesia medication (wearing the special snail hair cover he got for having an "in" with our wonderful nurse anesthetist!)