Sometimes I get on these kicks where I get frustrated with Dr's because I feel like they are just not doing enough for my daughter. Sometimes I am content with everything that is going on. Well recently (the last couple weeks) I went into frustration mode. So I started firing Dr's. First was her ENT. He was a very nice, very gentle, older gentleman, however, he has not done anything for her except confirm that she has hearing loss. Well, any idiot could have recognized that. Sadie has swallowing issues, airway issues, raspy, hoarse voice, questionable fluid in her ears. But has he looked in her throat? No. Has he looked in her ears? No. Why? because she was upset and he didn't want to make her more mad and her ear canals are very tiny so it was hard to see in them. Really? Dumb excuse. So we went in search for a new one. We went to see someone that one of my friends recommended. I told him my concerns and he actually listened to me and did something about my concerns right then and there. It was amazing! Low and behold we got some answers. A couple more pieces to her puzzle.
1. He looked in her ears with an itty, bitty microscope. He could see into her ears, after I was told by numerous Dr's her ear canals were to tiny to look in. He confirmed that yes she does have fluid in her ears. Poor girl has had fluid in her ears for at least 8 months. Her last ENT also said that even if there is fluid, her ear canals are to tiny to do anything to fix them. Well, her new ENT disagrees. Sadie is going to have tubes put in her ears in November. She is also going to have 2 different hearing tests done while she is under sedation to see if there is any change. Do I expect a miracle that she will be able to hear just fine? No (it would be nice though). But I am hoping that maybe she will be able to hear a little bit more sound, or maybe less muffled. I don't know but at least I will know that the problem was addressed.
2. He took an itty, bitty scope and went up her nose and down her throat. Yes, she got mad and hated every minute of it. However, this ENT was not afraid to upset her. He wanted answers too (or at least he was trying to make me happy.) Either way, we got answers. One thing that we questioned was if her vocal chords were partially paralyzed because of the raspy, hoarse, quiet voice. He visualized them and no they are not paralyzed like I was told. They work just fine. So either God wanted her to be more quiet in life or there is more going on inside the voice box that we can't see unless we cut her throat open. And that is not happening! But for now I am happy that they are not paralyzed. The Dr also visualized her airway. Guess what? it's not "floppy" like I was told. He said that her airway opens and closes just the way it is supposed to. He thinks the reasons that Sadie "snorts and sounds snotty" sometimes is that she is not swallowing her saliva appropriately and since she is mainly laying down it is just sitting there in her throat and nasal passageways causing the sounds. I tend to believe that answer since we know she doesn't like to swallow.
I was so happy when we left that appointment. No, I'm not happy that she is going to be sedated again for surgery, but hopefully this will give her a little bit more hearing one way or another. I'm also thankful that he gave me answers to other questions.
Our next appt was with Sadie's new cardiologist. No, I didn't fire her other one, I really liked him. However, he moved to U of M, to design a new patch for the holes in the heart so help avoid open heart surgery in babies. Anyways, I really like the new cardiologist. He was very knowledgeable and kind and gentle with her. I also told him that her neurologist is pretty sure she a mitochondrial disease even though it hasn't been proven yet and that I wanted to know what signs to look for in her heart to know if it is starting to be affected. You would have thought I started a fire under his butt. He said we absolutely have to find out if Sadie has the disease because that will effect IF she can even have her surgery on her heart. He now wants to watch Sadie's heart even closer and he gave me a whole list of things to watch for and to get her in immediately if we see any of these signs. He actually kind of scared me, BUT at the same time I know he cares, he listened to what I said, and he is now going to help me fight to get her diagnosed sooner rather then later with the mitochondrial issue. Umm, I think I love him. At least I don't feel like I am fighting that battle by myself anymore.
So the next Dr that I am firing is her neurologist. But I can't fire him until I find another one that is knowledgeable about her brain abnormalities and I'm hoping that he is also a mitochondrial Dr. But that is a story for another post.
1. He looked in her ears with an itty, bitty microscope. He could see into her ears, after I was told by numerous Dr's her ear canals were to tiny to look in. He confirmed that yes she does have fluid in her ears. Poor girl has had fluid in her ears for at least 8 months. Her last ENT also said that even if there is fluid, her ear canals are to tiny to do anything to fix them. Well, her new ENT disagrees. Sadie is going to have tubes put in her ears in November. She is also going to have 2 different hearing tests done while she is under sedation to see if there is any change. Do I expect a miracle that she will be able to hear just fine? No (it would be nice though). But I am hoping that maybe she will be able to hear a little bit more sound, or maybe less muffled. I don't know but at least I will know that the problem was addressed.
2. He took an itty, bitty scope and went up her nose and down her throat. Yes, she got mad and hated every minute of it. However, this ENT was not afraid to upset her. He wanted answers too (or at least he was trying to make me happy.) Either way, we got answers. One thing that we questioned was if her vocal chords were partially paralyzed because of the raspy, hoarse, quiet voice. He visualized them and no they are not paralyzed like I was told. They work just fine. So either God wanted her to be more quiet in life or there is more going on inside the voice box that we can't see unless we cut her throat open. And that is not happening! But for now I am happy that they are not paralyzed. The Dr also visualized her airway. Guess what? it's not "floppy" like I was told. He said that her airway opens and closes just the way it is supposed to. He thinks the reasons that Sadie "snorts and sounds snotty" sometimes is that she is not swallowing her saliva appropriately and since she is mainly laying down it is just sitting there in her throat and nasal passageways causing the sounds. I tend to believe that answer since we know she doesn't like to swallow.
I was so happy when we left that appointment. No, I'm not happy that she is going to be sedated again for surgery, but hopefully this will give her a little bit more hearing one way or another. I'm also thankful that he gave me answers to other questions.
Our next appt was with Sadie's new cardiologist. No, I didn't fire her other one, I really liked him. However, he moved to U of M, to design a new patch for the holes in the heart so help avoid open heart surgery in babies. Anyways, I really like the new cardiologist. He was very knowledgeable and kind and gentle with her. I also told him that her neurologist is pretty sure she a mitochondrial disease even though it hasn't been proven yet and that I wanted to know what signs to look for in her heart to know if it is starting to be affected. You would have thought I started a fire under his butt. He said we absolutely have to find out if Sadie has the disease because that will effect IF she can even have her surgery on her heart. He now wants to watch Sadie's heart even closer and he gave me a whole list of things to watch for and to get her in immediately if we see any of these signs. He actually kind of scared me, BUT at the same time I know he cares, he listened to what I said, and he is now going to help me fight to get her diagnosed sooner rather then later with the mitochondrial issue. Umm, I think I love him. At least I don't feel like I am fighting that battle by myself anymore.
So the next Dr that I am firing is her neurologist. But I can't fire him until I find another one that is knowledgeable about her brain abnormalities and I'm hoping that he is also a mitochondrial Dr. But that is a story for another post.
No comments:
Post a Comment