1.) I found out today by talking to the EB nurse in Cincinnati, Geri Kelly, WHOM I ADORE (she's maintained my sanity for a year- thank you, Geri:) that the only little girl that she knows of who's had this eye surgery done is from Canada. Comforting, yes I know... BUT this little girl (Zainab) had this AMT (Amniotic Membrane Transplant) done around March and is doing well from what I hear. SO that is great news to me. I plan to email her father shortly and find out anything else that I need to know :)
2.) Dr. Eustis, Tripp's opthalmologist, has never done this surgery before, nor has the corneal specialist at Ochsner, Dr. Shaw, NOR has the doctor that he called in Cincinnati. But they've all HEARD that it is supposed to do great things :) Don't get me wrong- he's an EYE doctor, so he's done similar things- just not this exact procedure. I have complete trust in Dr Eustis (after just talking to him on the phone for about 20 minutes). What else can I do but place my trust in him and in God that everything will be okay? So that is what I am doing. So maybe none of these doctors have done this- but how great will it be if it helps Tripp, and then in return can help any other EB child out there.
Ok so today I was having a nervous breakdown because Dr. Eustis and I hadn't really talked THOROUGHLY about exactly what is going to happen tomorrow. We had talked about this amniotic membrane each time I had brought Tripp to the doctor, but this last visit we had just decided that it's the last option and it needs to be done. So we scheduled it without really going into A LOT of detail what it was going to entail. That is why I called Geri, the EB nurse, today to see if she could tell me a little more about it. Well Geri had heard of it and that it's done great things, but the only case she was familiar with was the little girl in Canada. Anyway- so me, Nervous Nelly, put in 2 calls into Dr. Eustis, making SURE he would call back because I did not want the first time that we talked about this surgery thoroughly to be in the Pre-op room. He called back and explained things to me... I'll try to explain it to you the best I can:
He will be first exfoliating the tissue (blister) underneath is eyelid to the point that's it's bleeding. He will then take the amniotic membrane and stitch it in 4 different spots to secure it to the inner lid. The stitches will be dissolvable and he says they will not cause friction on his eyeball. This amniotic membrane should dissolve itself in about 4-5 days, hopefully causing Tripp's eye to regenerate it's own smooth surface again. He will also trim/snip (I hate that word) off that extra piece of skin that is fusing down is the corner of Tripp's right eye. So that will hopefully be gone. From what Dr. Eustis says, this amniotic membrane stuff is used for a TON of things and usually has very good results. I also explained to him how nervous I am about the actual "manipulation" of his eye/eyelid. He reassured me that he will take every precaution possible and will do the least bit of manipulation possible to his lid. He even said if he had to "lift" the lid and work underneath it, instead of "flipping" it and inverting it that he would do that.
Our favorite anesthesiologist will be working his case tomorrow. That makes me feel a whole lot better. His name is Dr. Corsino, and
1.) he has kids (you can tell)
2.) he has been with Tripp through 3 surgeries already
3.) he knows EXACTLY what he can and can't do when it comes to tape, touching, etc.
I wish some of these doctors could babysit :) Anyway, they will be doing both eyes and also drawing blood work for a new drug that they want to start in place of the steroid. I was going to ask if I could go back into the OR with him, but honestly I just don't think it's a good idea. I think it will cause more stress on me and more stress on the doctors. I feel that I have made myself clear (and will have the chance to make myself even more clear in pre-op) and I really feel VERY comfortable with Tripp in the hands of these doctors. I feel like they really do care about him. How fortunate are we that we have doctors here in New Orleans that are WILLING to do a procedure that they've never done before? That means that we don't have to travel across the country to get something like this done. Trust me, I am VERY grateful, and I place complete trust in these excellent doctors.
So, please, keep my little trooper in your prayers tomorrow. And also, say an extra prayer for the doctors, that they will know exactly the right things to do. As of now, we are planning to do both eyes. That could change depending on if Dr. Eustis looks at the other lid and thinks that it looks smooth enough to leave alone. He said we will talk about that tomorrow. So we will play it by ear. I will try to update you guys either by Facebook or Twitter tomorrow while in the waiting room. Thank you from the bottom of my heart for the love and support all of you have shown us. It's gotten us through "yesterday" and it will be what gets us through tomorrow. Love all of you :)