Ever heard of it? Me neither. That was until Miss Sadie came along. Let's talk about her eyes. This kinda goes along with my last post about her not feeling pain. Sadie cannot feel her eyes. We discovered this when she was about 4-5 months. I thought she was just a brave, non complaining little girl. I would wash her hair and water would get in them and she would never whimper or blink away the water. She would pull on her eyes and stick her fingers in them, but I thought it was because her NG tube was taped to her face close to her eyes. I thought it was kinda strange, but it never dawned on me that something serious was wrong. I was looking into her eyes one night just thinking about life and staring at that sweet face of hers when I realized she had not blinked in awhile. I decided to have a "staring contest" with her to see if maybe I just had not noticed that she blinked (cause really, who pays attention to a persons blink reflexes? not me). She won. The next day, she won again. Hmmm, this isn't right. I blew on her eyes, no blink. Ummmmm, this really is not good. The next day I made an appt with her opthamologist. I told him my concerns, he did his tests, turned to me and said "yep, she can't feel her eyes." Thanks, Doc I could have told you that. But my main question was "why, what can we do about this and what exactly does this mean for the future of her eyes".
Why? Our eye's are controlled by cranial nerves. Most of our cranial nerves are attached and start in our pons (part of our brain stem). Since Sadie's pons are underdeveloped, that obviously means that her cranial nerves are also underdeveloped. What part of her eyes are affected by this? Amazingly not her vision. Sadie actually has very good vision. She tracts motion and lights appropriately, makes good eye contact, and her emotions reflect what she sees (if shes sees happy, she smiles, etc). It does affect her blinking (she does blink, it's just not appropriately like you and me), her tear/lubrication formation, her sensations to her eyes (like touching them with a finger or water), and how much she can rotate her eyes (from left to right, and up and down, mostly her right eye has this issue).
What can we do about this? Unfortunately not much. Science hasn't figured out how to do cranial nerve transplants. So all we can do is care for her eyes. The treatment plan at first was every two hours rotate between eye gel/drops and eye antibiotics and washing out her eyes every time. That was a lot of work. Luckily, after all the abrasions and scratches were cleared up off her corneas, we changed her treatment to washing her eyes at least 3 times a day and putting eye ointment or eye gel in them. It is working great. We have not had anymore eye abrasions. Thank goodness!! The eye Dr also wanted to put her in arm restraints so that she couldn't touch her eyes. I said absolutely not. The poor girl can't eat by mouth, can't hear, unsure if she can taste and smell, and he wanted me to take away her hand, more importantly her thumb, the only enjoyment that this girl had. I don't think so. I will take my chances. I agreed that if her eyes got worse or became scratched again, then I would take it to the next level. Luckily, she learned quickly to leave her eyes alone (plus it helped that we removed her NG tube permanently and she had no reason to grab at her face). Every once in awhile we will see her hand up there, but the girls are quick to move her hands (they are so protective of her). The eye Dr also said that if all else failed we would sew her eyes semi shut. OMG!!! This was not option in my mind. This just pushed me and my family to be even more conscience about where her fingers were at all times and training her to keep them away from her eyes. So far it's working.
What exactly does this mean for the future of her eyes? The opthamologist will always be a big part of Sadie's life. Luckily since the abrasions have been under control we haven't had to see him recently. Only God knows what the future will hold, but for now we are doing our part to help keep those eyes as healthy as can be and at this point that is all we can do.
Why? Our eye's are controlled by cranial nerves. Most of our cranial nerves are attached and start in our pons (part of our brain stem). Since Sadie's pons are underdeveloped, that obviously means that her cranial nerves are also underdeveloped. What part of her eyes are affected by this? Amazingly not her vision. Sadie actually has very good vision. She tracts motion and lights appropriately, makes good eye contact, and her emotions reflect what she sees (if shes sees happy, she smiles, etc). It does affect her blinking (she does blink, it's just not appropriately like you and me), her tear/lubrication formation, her sensations to her eyes (like touching them with a finger or water), and how much she can rotate her eyes (from left to right, and up and down, mostly her right eye has this issue).
What can we do about this? Unfortunately not much. Science hasn't figured out how to do cranial nerve transplants. So all we can do is care for her eyes. The treatment plan at first was every two hours rotate between eye gel/drops and eye antibiotics and washing out her eyes every time. That was a lot of work. Luckily, after all the abrasions and scratches were cleared up off her corneas, we changed her treatment to washing her eyes at least 3 times a day and putting eye ointment or eye gel in them. It is working great. We have not had anymore eye abrasions. Thank goodness!! The eye Dr also wanted to put her in arm restraints so that she couldn't touch her eyes. I said absolutely not. The poor girl can't eat by mouth, can't hear, unsure if she can taste and smell, and he wanted me to take away her hand, more importantly her thumb, the only enjoyment that this girl had. I don't think so. I will take my chances. I agreed that if her eyes got worse or became scratched again, then I would take it to the next level. Luckily, she learned quickly to leave her eyes alone (plus it helped that we removed her NG tube permanently and she had no reason to grab at her face). Every once in awhile we will see her hand up there, but the girls are quick to move her hands (they are so protective of her). The eye Dr also said that if all else failed we would sew her eyes semi shut. OMG!!! This was not option in my mind. This just pushed me and my family to be even more conscience about where her fingers were at all times and training her to keep them away from her eyes. So far it's working.
What exactly does this mean for the future of her eyes? The opthamologist will always be a big part of Sadie's life. Luckily since the abrasions have been under control we haven't had to see him recently. Only God knows what the future will hold, but for now we are doing our part to help keep those eyes as healthy as can be and at this point that is all we can do.
No comments:
Post a Comment