The day after my last post, we went to our regular cornea doctor in the big city 2.5 hours away, for an appointment in which we'd planned to meet the tarsorrhaphy surgeon and schedule the procedure. DH and I had prayed and prayed, but we just did not feel comfortable. The appointment was a mess. First off, Ev had just woken up from his nap when we pulled him out of his car seat and took him into the office. We had a different nurse that day and when he fully woke up, he flipped out. Like, seriously flipped out. If he'd been an adult you'd have thought he was having a psychotic episode. He thrashed, cried, jumped, and was either trying to get into my arms or trying to get out of them. Honestly it was pretty alarming, because he's never done anything like this ever before. Retrospectively, I like to think Ev was making it impossible for us to sit down at talk with Dr. B about the procedure, thereby making it impossible for her to talk us into it, because that's exactly what happened. We didn't get a moment with her in which Ev wasn't totally losing his shit, and by the time he calmed down she had clearly moved on to other patients and the surgeon came in to talk to us. The whole thing was very haphazard, largely because of Ev but also because Dr. B always seemed hurried and eager to get away from us. The surgeon made the egregious error, in a conversation about how long the tarsorrhaphy had to remain in place, of proclaiming that if he never thought it ought to be taken 'down' (number of stitches reduced to open the eye further), then he just never would agree to do it! He would leave Ev's eye shut forever if that's what he thought was best. He didn't care what we thought. Um, yeah, we could tell he didn't work with children and their parents very often, because guess what? I'm boss!
Dr. B wandered in around this time and just cooled her heels while her co-worker acted horribly unprofessional, including bashing some other doctors we'd consulted - and not just bashing, either. He did the most unprofessional bash job we've ever heard, and we've heard doctors bash each other a lot, because we see so many specialists.
Eventually a resident wandered in, presumably looking to get a view of how NOT to treat a family with a small child, and we all agreed that DH and I did not feel comfortable and should see yet another doc for a third opinion. We had little hope for the new doc, as she was an acquaintance of Dr. B.
I went to the car and sobbed, not only unhappy with the tarsorrhaphy and putting Ev under again, but also unhappy that we didn't have a positive, guiding force to carry us through this hard decision.
I decided that night that if I was going to give Ev the tarsorrhaphy against my better judgment, I would do it only after doing everything else. I stayed up until 2 a.m. e-mailing every specialist I hadn't consulted, and was able to consult Miami, Baltimore, Boston, and Atlanta within the next 12 hours - a true miracle. Somewhere during this time, Dr. Colby in Boston helped us get in touch with Dr. Joseph at the Boston Foundation for Sight, and we started talking about a PROSE lens in place of the tarsorrhaphy option.
When we saw Dr. F in the big city Wednesday (the third opinion Dr. B had set up for us), the stars aligned and we LOVED her. I then talked to Dr. J in Boston and it was decided that Dr. F and Dr. J would work together on our little Ev.
Dr. F prescribed some new drops and oointment that, since last week, seem to have almost healed Ev's ulcer. As soon as it's healed, we can go to Boston and get a PROSE lens to help 'maintain' Ev's eye. We are about to leave the house now for a check up with Dr. F, and we hope and pray she sees as much progress in his eye as we do. No tarsorrhaphy! That's what I'm hoping for. But now if they suggest it, we'll do it, because we trust Dr. J and Dr. F - which is a major blessing.
In other news, I had a chemical pregnancy this week, so that's another thing to blog about... :(
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