Last Monday morning Sadie woke up with a little bit of a red eye and a little bit of goopiness. This is not anything new for her. Because she has corneal anesthesia (also known as neurotrophic keratopathy) her eyes do not produce enough tears to keep them moist and she tends to poke them and not realize it because she can't feel them. That morning I started her normal eye drop routine and didn't think much of it. A little later I noticed that it was getting a little more swollen so I thought maybe I should do extra drops. I did this, but this time she rolled her eyes back in her head so I couldn't see her iris and pupil and they were extremely blood shot. This was odd because she never rolls them back when I give her eye drops and they are never this red a couple hours after her first treatment. I watched that eye over the next couple of hours and soon she completely closed it and wouldn't look out of it. OK, something was really wrong with it, I thought. I opened her eye with my fingers and she rolled it back again. I kept it open this time and finally she rolled it back and looked at me. Sure enough, you could actually see an injury to her eyeball itself. A cloudy spot right to the left of her pupil. She poked it bad this time. I called her eye Dr and asked if I should do the usual eye regimen and the aid stated that he wanted to see her that afternoon.
I made arrangements for someone to get Chloe off the bus and then Aubrie, Sadie and I left to go to the eye Dr. I stopped and got Aubrie a snack because I knew it was going to be a very long visit. Why? Because 1. her eye Dr always takes a long time and 2. Sadie was being worked into the schedule. I was right. 3 hours we were there! But I can't complain. He truly cares about her and her eyes. First we saw his partner that works in the same office. He did his whole exam and told me what he thought. Then he left the room for a few minutes and came back with Sadie's real Dr that she always sees. The first Dr stated that he didn't like what he saw and wanted her own Dr to see it since he is very familiar with Sadie.
The Dr looked at it and said he didn't like what he saw either. They stated it was not a poke to her eye. It was a neurotrophic ulcer. What?! How could she get this big of an ulcer this fast? When she went to bed last night her eyes were perfect. 12 hours later and we have an ulcer on her eyeball. Grrrr! I work hard to keep these eyeballs safe. We do eye drops/gel and ointment 3 times a day or more depending on how they look. Everybody, including her sisters, are always on the look out for her sticking her fingers in her eyes. We do not want anything happening to her vision. I asked if ulcers could just happen that fast and with no warning and he stated "yes". I was so bummed.
The Dr stated that he is treating it aggressively to begin with to make sure it doesn't get worse. So this is the plan: 1. we are alternating between an antibiotic eye drop and an antibiotic eye ointment every 2 hours. 2. we are patching her eye at night and anytime during the day that she is not in our eye sight. 3. we are seeing the good Dr every 2 days until we have a good handle on this ulcer. Talk about exhausting. You wouldn't think so and the task itself is not hard, but constantly watching the clock is terrible. Every 2 hours for her eyes, every 3 hours for her food. I live by the clock now. Anybody that really knows me, knows I hate the clock! I am late for everything. I plan nothing. I go with the flow and am the most unstructured person ever. Now, I have had to change a little bit because of my girls, but for the most part I still don't "believe" in clocks. This is killing me to have to watch a clock all day, but ANYTHING for my baby. Maybe this is one of those lessens that Sadie is trying to teach me in a round about way. Lol My mom would love if I changed this "bad habit" (as she calls it. I call it relaxed).
A week and a half later we are still doing the same regimen. But it is getting better. Her eye is a little less swollen, she is actually using it now, and it is now more white and pink then it is red, and the spot is becoming less visible to the naked eye. We go back to the Dr again on Friday and lets hope and pray that he agrees that it is improving so that maybe we can adjust the drops/ointment a little further apart and stop seeing him every two days (which honestly wouldn't be that bad except its 30 mins away, one way. I know, it's still not that bad, but this often... it's a pain in the butt).
I made arrangements for someone to get Chloe off the bus and then Aubrie, Sadie and I left to go to the eye Dr. I stopped and got Aubrie a snack because I knew it was going to be a very long visit. Why? Because 1. her eye Dr always takes a long time and 2. Sadie was being worked into the schedule. I was right. 3 hours we were there! But I can't complain. He truly cares about her and her eyes. First we saw his partner that works in the same office. He did his whole exam and told me what he thought. Then he left the room for a few minutes and came back with Sadie's real Dr that she always sees. The first Dr stated that he didn't like what he saw and wanted her own Dr to see it since he is very familiar with Sadie.
The Dr looked at it and said he didn't like what he saw either. They stated it was not a poke to her eye. It was a neurotrophic ulcer. What?! How could she get this big of an ulcer this fast? When she went to bed last night her eyes were perfect. 12 hours later and we have an ulcer on her eyeball. Grrrr! I work hard to keep these eyeballs safe. We do eye drops/gel and ointment 3 times a day or more depending on how they look. Everybody, including her sisters, are always on the look out for her sticking her fingers in her eyes. We do not want anything happening to her vision. I asked if ulcers could just happen that fast and with no warning and he stated "yes". I was so bummed.
The Dr stated that he is treating it aggressively to begin with to make sure it doesn't get worse. So this is the plan: 1. we are alternating between an antibiotic eye drop and an antibiotic eye ointment every 2 hours. 2. we are patching her eye at night and anytime during the day that she is not in our eye sight. 3. we are seeing the good Dr every 2 days until we have a good handle on this ulcer. Talk about exhausting. You wouldn't think so and the task itself is not hard, but constantly watching the clock is terrible. Every 2 hours for her eyes, every 3 hours for her food. I live by the clock now. Anybody that really knows me, knows I hate the clock! I am late for everything. I plan nothing. I go with the flow and am the most unstructured person ever. Now, I have had to change a little bit because of my girls, but for the most part I still don't "believe" in clocks. This is killing me to have to watch a clock all day, but ANYTHING for my baby. Maybe this is one of those lessens that Sadie is trying to teach me in a round about way. Lol My mom would love if I changed this "bad habit" (as she calls it. I call it relaxed).
A week and a half later we are still doing the same regimen. But it is getting better. Her eye is a little less swollen, she is actually using it now, and it is now more white and pink then it is red, and the spot is becoming less visible to the naked eye. We go back to the Dr again on Friday and lets hope and pray that he agrees that it is improving so that maybe we can adjust the drops/ointment a little further apart and stop seeing him every two days (which honestly wouldn't be that bad except its 30 mins away, one way. I know, it's still not that bad, but this often... it's a pain in the butt).
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