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We had a really good meeting with Dr. Clawson yesterday. After getting stuck in traffic for two hours (overturned tractor-trailer, but no fatalities. Just dellllaaaaaaaaaaaaay). At least it was all on the news so they knew we weren't lollygaggers.
Okay, we *are* lollygaggers, but not yesterday.
Long story short? Charlie is getting a G-Tube. BUT it was still a bad idea when she was at JHU.
Remember the list of reasons I had for her not getting a G-tube? The fact that she was gaining weight, wetting her diapers, not dehydrated (I'm not sure if I listed that one, but it's important), that sort of thing? Well, since she's been back at Winchester, she's been gaining a little then losing a little, then gaining a little, then losing again. Nothing terrifying, but she hardly ever loses weight. And she's been throwing up lately, for no reason they or we can discern. So she's getting even less nutrition, and they can only give her so much at night (she gets food on demand during the day, then over the pump at night, to make up what she didn't take). And she hasn't been wetting her diapers as much, meaning that she's heading toward dehydration.
Why not just keep her on the OG(oral-gastric)tube? Well, for one, she absolutely hates it and has hated it from the moment she noticed it. She fights when it's put down, she tries to pull it out, she always pushes it as far out with her tongue as she can. It isn't torture, but it's pretty damn close, given that this has been down her throat (as her nasal passages are too narrow) pretty much since birth. It's irritating her throat, possibly causing her reflux and could be one of the reasons she's throwing up. Because when she throws up, the tube comes out with everything else (and it may not be. It might be a total mystery forever if there's no firm medial reason, 'cause she's two and a half months old, so it's not like she'll remember once she's old enough to talk).
We were going to have her on the tube at home, but there's a very real chance of the tube moving up (or Charlie pulling it partially out) and her aspirating the food into her lungs, which will cause pneumonia. Talk about the *last* thing she needs.
But she simply won't eat enough by mouth. Dr. Clawson hypothesizes that having the tube down her throat the majority of the time (though now they take it out during the day, so half of the majority of the time) is making her not wanting to have *anything* in her mouth at all, period. She'll still take some from her bottle, but usually not much. And the later it gets, the less she takes. Apparently, she won't eat at night anymore. As in *refuses*. And none of us know why. Sure, sometimes it's 'cause she's sleepy, but not all the time.
If she could start solids, this would be so much easier. But she's at least a month and a half from that, and that's just using the time Sammy started experimenting with solids.
I hate this idea. Jeff hates this idea. The doctors hate this idea. But, it's the best of a small handfuls of ways to get nutrition into this child.
The meeting was amazing in its difference from JHU. There was the doctor and two nurses who knew Charlie well. We each got a chance to talk, and nobody tried to talk us into *anything*. This was presented as the best option, but Dr. Clawson said that if we wanted to continue with the tube feeding, she would certainly do that.
She said that when she was trying to decide something like this, she treated the case as if the baby were her own child. I was thunderstruck. Because one of the things my mom had said was that, when my Boomps was meeting with a doctor to figure out what to do wrt his lung cancer, the doctor offered an option and my grandfather said "If I was your father, would you still think {option} was a good idea?" The doctor said yes, and so Boomps did it. The fact that she said this before I'd even started to ask this question helped me so very much.
I still don't want my "doesn't even weigh as much as the sack of potatoes we buy at Costco" sized baby to have surgery. And if I think about it for too long, the idea of them cutting into her makes me cry, just like the idea of her having the surgery to correct her stenosis made me cry.
But, this doesn't feel WRONG the way it did at JHU. I am humiliated by the fact that Jeff and I were talked into this at JHU, even if it was for less than an hour. I don't know that I'll ever forgive myself for that, even if we didn't get to the point where we signed a consent form. But this time? It's big and it's scary but it's also okay.
Right now, this is what she needs. Partially to get enough nutrition into her so that she doesn't get uber-dehydrated, lose weight and be generally miserable. And partially because if we keep ramming that tube down her throat, the oral aversion she has now is going to grow to the point where she'll pretty much refuse to take *anything* by mouth. That would suck so badly for her (and wouldn't end in babyhood). It wouldn't be a picnic for us either, but this is so very much about Charlie. She's gone through so much in her short life, and if this will help her eat, help her *want* to eat and bring her home, then this is what we're going to do.
The plan is, once she's got the tube, that she'll eat by mouth whenever she wants and we top her up at night. Once she doesn't have to deal with the tube down her throat, we're hoping she increases what she takes by mouth, and eventually, she won't need the G-tube any longer.
So. Sometime this week or possibly next week, we're off to UVA. Dr. Clawson & the hospital have a really good relationship with them, she trusts them and she's going to tell them, flat out, that we've pretty much tried everything to get her to eat and if they want to try for a day or two, fine, but *Only* for a day or two at the most. That she's there for surgery, and if they don't plan to do it, don't accept the transfer.
Have I mention how much I like Dr. Clawson? Dr. Lee rocks as well, but I've had more contact with her. Oh, and she knows the pediatrician we picked out and says she's really good. Yay. :)
Also, both the doctors have expressed their frustration with JHU. But, at least they didn't return *their* calls either. So it wasn't just that they hated us...apparently they hate everyone. ;)
Okay, we *are* lollygaggers, but not yesterday.
Long story short? Charlie is getting a G-Tube. BUT it was still a bad idea when she was at JHU.
Remember the list of reasons I had for her not getting a G-tube? The fact that she was gaining weight, wetting her diapers, not dehydrated (I'm not sure if I listed that one, but it's important), that sort of thing? Well, since she's been back at Winchester, she's been gaining a little then losing a little, then gaining a little, then losing again. Nothing terrifying, but she hardly ever loses weight. And she's been throwing up lately, for no reason they or we can discern. So she's getting even less nutrition, and they can only give her so much at night (she gets food on demand during the day, then over the pump at night, to make up what she didn't take). And she hasn't been wetting her diapers as much, meaning that she's heading toward dehydration.
Why not just keep her on the OG(oral-gastric)tube? Well, for one, she absolutely hates it and has hated it from the moment she noticed it. She fights when it's put down, she tries to pull it out, she always pushes it as far out with her tongue as she can. It isn't torture, but it's pretty damn close, given that this has been down her throat (as her nasal passages are too narrow) pretty much since birth. It's irritating her throat, possibly causing her reflux and could be one of the reasons she's throwing up. Because when she throws up, the tube comes out with everything else (and it may not be. It might be a total mystery forever if there's no firm medial reason, 'cause she's two and a half months old, so it's not like she'll remember once she's old enough to talk).
We were going to have her on the tube at home, but there's a very real chance of the tube moving up (or Charlie pulling it partially out) and her aspirating the food into her lungs, which will cause pneumonia. Talk about the *last* thing she needs.
But she simply won't eat enough by mouth. Dr. Clawson hypothesizes that having the tube down her throat the majority of the time (though now they take it out during the day, so half of the majority of the time) is making her not wanting to have *anything* in her mouth at all, period. She'll still take some from her bottle, but usually not much. And the later it gets, the less she takes. Apparently, she won't eat at night anymore. As in *refuses*. And none of us know why. Sure, sometimes it's 'cause she's sleepy, but not all the time.
If she could start solids, this would be so much easier. But she's at least a month and a half from that, and that's just using the time Sammy started experimenting with solids.
I hate this idea. Jeff hates this idea. The doctors hate this idea. But, it's the best of a small handfuls of ways to get nutrition into this child.
The meeting was amazing in its difference from JHU. There was the doctor and two nurses who knew Charlie well. We each got a chance to talk, and nobody tried to talk us into *anything*. This was presented as the best option, but Dr. Clawson said that if we wanted to continue with the tube feeding, she would certainly do that.
She said that when she was trying to decide something like this, she treated the case as if the baby were her own child. I was thunderstruck. Because one of the things my mom had said was that, when my Boomps was meeting with a doctor to figure out what to do wrt his lung cancer, the doctor offered an option and my grandfather said "If I was your father, would you still think {option} was a good idea?" The doctor said yes, and so Boomps did it. The fact that she said this before I'd even started to ask this question helped me so very much.
I still don't want my "doesn't even weigh as much as the sack of potatoes we buy at Costco" sized baby to have surgery. And if I think about it for too long, the idea of them cutting into her makes me cry, just like the idea of her having the surgery to correct her stenosis made me cry.
But, this doesn't feel WRONG the way it did at JHU. I am humiliated by the fact that Jeff and I were talked into this at JHU, even if it was for less than an hour. I don't know that I'll ever forgive myself for that, even if we didn't get to the point where we signed a consent form. But this time? It's big and it's scary but it's also okay.
Right now, this is what she needs. Partially to get enough nutrition into her so that she doesn't get uber-dehydrated, lose weight and be generally miserable. And partially because if we keep ramming that tube down her throat, the oral aversion she has now is going to grow to the point where she'll pretty much refuse to take *anything* by mouth. That would suck so badly for her (and wouldn't end in babyhood). It wouldn't be a picnic for us either, but this is so very much about Charlie. She's gone through so much in her short life, and if this will help her eat, help her *want* to eat and bring her home, then this is what we're going to do.
The plan is, once she's got the tube, that she'll eat by mouth whenever she wants and we top her up at night. Once she doesn't have to deal with the tube down her throat, we're hoping she increases what she takes by mouth, and eventually, she won't need the G-tube any longer.
So. Sometime this week or possibly next week, we're off to UVA. Dr. Clawson & the hospital have a really good relationship with them, she trusts them and she's going to tell them, flat out, that we've pretty much tried everything to get her to eat and if they want to try for a day or two, fine, but *Only* for a day or two at the most. That she's there for surgery, and if they don't plan to do it, don't accept the transfer.
Have I mention how much I like Dr. Clawson? Dr. Lee rocks as well, but I've had more contact with her. Oh, and she knows the pediatrician we picked out and says she's really good. Yay. :)
Also, both the doctors have expressed their frustration with JHU. But, at least they didn't return *their* calls either. So it wasn't just that they hated us...apparently they hate everyone. ;)