On Wednesday, Harry had an appointment with his new doctor, who would be performing, what hopefully, would be a more permanent solution to his eye problems. My mom met me at the hospital to watch Jack and Addie. Afterwards, we were planning on going to visit my aunt. However, the doctor said he wanted to do Harry's surgery the next day, which though unexpected, was actually a good thing because he was in a lot of discomfort, and the lashes were starting to affect his vision in his left eye. Jack was pretty excited to be able to go to the Children's Hospital the next day. ("We'll go see the ball thing, look at the fish tanks, check out the gift shop, maybe get a little Dairy Queen..." I thought it was kind of funny, but also a little sad that he has a hospital's greatest hits routine.)
Cory met my mom, the kids, and me at the hospital. We didn't know what kind of surgery Harry would be getting. There were three possibilities, and the doctor couldn't tell what he would need until Harry was under anesthesia in the operating room. So, we signed consent for all three and for the anesthesia (which, even though the chance of complications is slim, it still rips your heart out every time you sign it.) After awhile, the phone in our room rang, and the nurse ( I think; Cory answered.) let us know they'd be doing electrolysis on the right eye, (which Harry has had done several times, maybe seven?) and a more complicated procedure on his left eye. The SJS and the several electrolysis treatments for eyelashes, have led to tissue loss in his lower eyelid and have cause the eyelid to flip inward, causing a row of eyelashes to always be scratching his cornea. Since the offending lashes were in a pretty straight row, and to try and return Harry's eyelid as close to back to normal as possible, the best choice was to make an incision to release the scarred area of the lower lid, pop the eyelashes back out where they should be, and fill the open area of the lid with a skin graft from the inside of his lower lip. They thought it would take about an hour, but it took more like two and a half. His little face meant that making tiny stitches was more time consuming than they thought it would be.
Everything went well. His front tooth that was used to secure his ventilator fought the good fight, but after almost six months of being wiggley, it came out during anesthesia. I know it's not a big deal, and if that's the only thing that happens after all of this, that we are pretty lucky. But looking at it makes me sad. I had it in my mind that once he started to get better, it would pretty much be like nothing had happened. His little tooth missing for the next three or four years will be a reminder that we have a new normal. But he is still perfect and adorable, so I will just need to get over it! Aside from the tooth, he looks like he's been beat up, but that will get better in the next few days and weeks. (Cory keeps calling him Glass Joe.) He is only in a little pain ("My eye kind of hurts, and these lines in my mouth." aka: the stitches from his skin graft) He is on a soft food diet for the next week or so. The anesthesia has made him a little wheezey, so he's needs breathing treatments from his nebulizer until he starts to sound a little better. He is getting his eye ointment a few more times per day than normally, and he had a little bit of bleeding on his trach site, which his ENT doctor assured us was not anything to worry about. All in all, he's doing pretty great considering. And, Jack and Addie were happy to spend the day in the sibling playroom. The workers remembered Jack from before, and Addie was finally old enough to play there. St. Louis Children's Hospital really is a wonderful place. (Side note: Last night, Harry said he was in pain and wanted more Tylenol. It was too soon, so I filled the medicine spoon thingy with apple juice and gave it to him. He went for it, and then fell asleep.)
Up next for Harry is an appointment on Wednesday, just to check in after surgery. After that, hopefully nothing! He will have some follow up appointments over the next few months to make sure everything is going well. The best case scenario is that none of the lashes come back in the right eye, and the reshaping of the left eye is successful and permanant. Other, less desirable, scenarios, involve the lashes coming back and the reshaping not working, which would lead to cryogenic freezing of the lashes, and if the right eye got misshapen, a surgery like the one he had on his left eye. We are praying that that won't happen though, and hopeful that the end is in sight. I read this article the day before the surgery, about a boy still having lash trouble four years later. I can't even think about that being a possibility, so please keep our sweet boy in your prayers. Also up next, hopefully, will be attempt number three at going on our Atlanta trip!
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