Today I took Emily back into Manhattan to see Dr. Kane for the first time since her cornea transplant. He was very happy with the way her cornea looked, he said it was very clear and he could see her retina and optic nerve well. Her eye pressure was 26 in both eyes, which is just ok... not great...but not completely terrible either. He's not changing any of her medication, but we talked about following through with the plan to insert another valve in the left eye.
The one valve in the left eye is not enough to control the fluid build up, so she will need to have a second one implanted to help maintain a lower pressure. This was supposed to happen months ago but that plan had to be postponed because of the perforation she had in her cornea. Dr. Kane said that he could see her optic nerve and it would benefit from having lower eye pressures. He didn't say that there was damage, but the fact that he said he could see it and it would benefit from the lower pressure leads me to believe he saw something he didn't like. That really scares me. Once damage is done, it is not reversible. If she loses vision in that eye because of it, she can't get it back.
He was encouraged by where the lens implant was placed, it allows her good vision at a close distance. It also opens up alot of possibilities for treatment for her because now there is plenty of room to place the new valve behind the lens, keeping it away from the cornea graft. The further away the better the chance it will not compromise it. Dr. Kane also mentioned that he is considering taking out the old valve and replacing it with one that will work more effectively. He suggested doing the surgery fairly soon, but how soon was not decided. We are going away next Friday for a week at the shore, so it will wait at least until we get back. But that feels way too familiar. This exact scenario happened last July when we were scheduling her first Glaucoma surgery. We went down the shore for a week and came home to a surprise surgery 2 days later. I really don't want to stress about that the entire time we are away. Can't I do anything for just a few days that doesn't require me to think about any of this??? I deserve a vacation from this too you know.
Dr. Kane sent an email to Dr. Zaidman while I was in his office. He wants to get his opinion on how soon he would feel comfortable allowing her to have another surgery. It's bad enough that she will be going back into the operating room in August to have the stitches removed from the cornea transplant, but now she'll have to have the Glaucoma surgery too. And it's a two step process so about a month later she'll have to go in AGAIN so Dr. Kane can open the drainage tube on the new valve. Lets count them....That's 1...2...3 surgeries that will need to take place within the next 2 months. That means that by the time she is 2 years old she will have had at LEAST 15 surgeries. And that's not including any further exams under anesthesia she might need. That total will be coming close to 2o by October.
With 3 more impending surgeries, I just can't help but feel discouraged today. I know that her cornea looks good and so far is doing very well. And I know the valve needs to be replaced to better control her Glaucoma. And I already knew that these surgeries would be coming up. But when you look at the big picture and realize what she has been through already and what she still has to go through, it is just overwhelming. She doesn't deserve this.
A good friend asked me today if there was ever going to be an end to her surgeries. Sadly we will never be able to answer that question.
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