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Discussion Starter #1
For those of you who have a team of doctors, working on various issues, how do you manage them? One of VeeGee's docs, the one whose portion of her care is most critical, isn't all too excited about sharing decision making, not with me, but with the other docs. I'm so frustrated, because he just keeps delaying making decisions that everyone else (even those whose specialties overlap his) knows have to be made. Even though even he has said what is likely going to have to happen, he's making us come in for ANOTHER consult (you know, ten minutes or so) before he'll schedule the surgery that he's already predicted. He's extremely conservative, and, mostly, I'm really glad about that. But sometimes, like now, when I'd really like to get all of her surgeries scheduled some time this summer, sooner rather than later, because I don't want her to miss the entire first part of her kindergarten year at a new school. Our school starts ridiculously early too (August 6th -- ugh).<br><br>
I suppose there's not a lot I can do, but just needed to rant. Thanks.
 

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Hmmm. I don't have any advice, but I share a similar experience. Odin's GI pedi gave him a FTT dx long ago and a couple months ago said we need to start supplementing. Of course, DS's other docs rightfully disagree as Odin's almost perfectly proportional. I know some of Odin's docs are very comfortable with parental involvement in decision making, some believe only they are qualified, while others are just in awe of Odin like kids in a candy store.<br><br>
I just inform the egotistical docs that we'll make the final decision after everyone's been updated and all relevant information acquired, including what we experience at home.
 

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Oh man, we go to some of the same specialists and I can really empathize with you there. They are suddenly so conservative (maybe he'll grow out of it, maybe it's a virus, maybe it's just constipation, etc) that it seems like it takes forever to get things done. Our GI decided on the appendicostomy a year and four months before it was finally scheduled. And all that was accomplished in that year and four months was that we really learned well that enemas suck. In fact, his bowel issues just got worse and what finally made the surgery happen was that we could no longer manage without it. We maybe could have prevented some of our numerous hospital stays this past year if we had just done it before it got unavoidable. It would have been a lot better emotionally. It's just so frustrating when one person is just not on board because they're not the ones that have to deal with the emotional fall out.<br><br>
We're about to start the whole process all over now that we have time to focus on something else. We want to get doctor approval to let Linden chew food and spit it back out. In order to do this we have to get neuro, metabolics, pulmonology, and GI on board. Neuro was most likely to even hear what I wanted to do, so I asked him last week. He said that he couldn't promise anything would come of it, but he'd order a swallow study and a consult with a SLP (Gwen!) to see if we could come up with a workable plan. Gwen's out of town till next week, so we're at a halt till then, but then we'll do the most unusual swallow study ever, how well he can chew and spit. lol. I'm very excited about that, which is a good thing because I've always dreaded swallow studies but this one seems conquorable. We just had to reset our goal.<br><br>
I think that GI (same hospital) will be on board but think it's a dumb idea. Kinda a "well do whatever you want to do, it might make him feel bad but it won't kill him from a GI standpoint." So I'm not too worried about that.<br><br>
Pulm (local children's hospital) has been fairly good at quality of life vs risk taking (we've declined a trach for 2 years now and he's always understood and is okay with that deciscion). I think he would see my point about this being a matter of quality of life and some risk is worth taking.<br><br>
Neuro will just be a sheeple and go with the majority. I don't think he'd nix it at all. He's always very hesitant to decide anything. For instance, Linden has had medically witnessed seizures but we don't medicate him for them. They're not sure why he has them and he's had 2 negative 30 minute EEGs (which I think isn't enough to judge one way or another, but that's another issue). They think it could be some just totally whacked out lab values that cause it and since they don't know what it could be, they don't do anything.<br><br>
Metabolics (Houston) will be the hardest to convince. She has said that even if Linden were to pass a swallow study, she would not be okay with him eating orally in the foreseeable future. She said that since his swallow was degenerating for so long, even if he could swallow now it would not last since his disease is degenerative. She thinks that even if he could swallow right now, feeding him would be a risk in two aspects. The first risk is that he could aspirate when he's tired or not feeling well etc (it's mito, it kinda just does what it wants) and we might not know it till damage had occurred and he had gotten pneumonia or something. If that happens, that can affect his co2 retention problem enough to necessitate the trach and vent and that isn't worth the risk since he hasn't ever eaten. The second risk is that he'd eat for a few months or years and then begin aspirating again and then you'd have to take food away again. The emotional cost would not be worth it and it would just be too cruel to him mentally to even think about.<br><br>
So basically that means that we will have the one man out if we were trying to go for actually swallowing food. There is a slight possibility for her going for something like a glottal swallow, but that may be a few years down the road. So we've had to readjust our goals. We don't say "maybe he'll pass it and be able to eat, or nothing will change," we say, "we don't even care if he can swallow, if he doesn't aspirate with the chewing and spitting then we'll settle for that alone."<br><br>
So now our goal isn't to see if he can swallow, but to see if we can find a way to let him experience some textures of foods (he can't handle anything bready or crumbly, it has to be something like raw fruits and veggies or beef jerky or steak). And if we can manage to prove that with the swallow study, we'll be able to present the case to our "lone man out." And if she doesn't approve it then I'm just going to have a total mental breakdown. But I have a lot of hope that she will, because it's workable long term whether he can swallow or not.<br><br>
And that is a really long and drawn out way of saying "oh yes, I totally feel where you are coming from." It makes my heart ache for you because I am right here with you. It's a very helpless place to be.
 

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Discussion Starter #4
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<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15419576"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">while others are just in awe of Odin like kids in a candy store.</div>
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We get A LOT of that. Some of it is just her appearance, and the "look how far she's come." I really don't think most of her docs expected her to live. She was so close to death when she came to us. Closer, really, than we realized at the time (which was probably merciful).<br><br>
A few weeks ago we were there for a surg consult and she had a really serious reaction to a spider bite. It looked just like Lyme's Disease, and we ended up in the ER for 8 hours (we thought we'd be in town for about ten minutes before coming back home). They brought practically every doc in the hospital to see her, in part because Lyme's doesn't happen down here and in part because of the recent genetics dx. They even sent a medical photography to come take pictures of her. It was pretty funny.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">I just inform the egotistical docs that we'll make the final decision after everyone's been updated and all relevant information acquired, including what we experience at home.</td>
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I don't really have much of that. At Vandy I feel very well listened to, had two docs in the last few weeks tell me how much they respect me. The one egomaniac we had was here in Memphis, and we fired him. I've never been so mad at anyone in my life.<br><br><br>
Motherwhimsey - Oh my word. That's just too much. So frustrating. Poor guy. How often do you have to go see the metabolic doc? Do they talk to each other or are you completely in the middle? Hugs back atcha!<br><br>
I just heard from the GI's nurse that he and the one otolaryngologist (the one who's ready to roll) have been communicating and do think that this cough is reflux, and that it's better now (not sure I agree, but I've been really not in tune with this cough for some reason, so I'll go with his impression). They've also decided to bring her in some time at the end of the month for the GI scopes (up AND down, bless her), and she has to go under general for that because of the apnea. Still waiting on actual confirmation of that date. But, at least, it's good to know that they're communicating actively. I LOVE that the nurse can look at the MyHealth site and tell what they've been talking about. Now to get the other guy moving. He's out of town for two weeks now, so I guess June 9th is gonna stick. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

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<div>Originally Posted by <strong>AndVeeGeeMakes3</strong> <a href="/community/forum/post/15419672"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
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Motherwhimsey - Oh my word. That's just too much. So frustrating. Poor guy. How often do you have to go see the metabolic doc? Do they talk to each other or are you completely in the middle? Hugs back atcha!<br></div>
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We're supposed to see her ever 3-6 months. We haven't gone as many times this year as we had planned because he was either inpatient or we were too broke. They do talk to each other if they need to. Sometimes I get fed up with it and tell them they need to talk to each other. But something like the swallow study thing, that I will have to present to each of them individually. It's totally worth the effort though.<br><br>
I'm just frustrated for you though. It's such a great hospital but sometimes it can be so flipping exasperating to deal with. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<div>Originally Posted by <strong>AndVeeGeeMakes3</strong> <a href="/community/forum/post/15419672"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">We get A LOT of that.</div>
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Odin appears healthy/normal so docs who don't know him (esp general pedis) do the double take. Then, they ask me all sorts of questions since I know more than they do. LOL<br><br><div style="margin:20px;margin-top:5px;">
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<div>Originally Posted by <strong>AndVeeGeeMakes3</strong> <a href="/community/forum/post/15419672"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">one egomaniac we had was here in Memphis, and we fired him. I've never been so mad</div>
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Yeah, the egomaniac was here in Memphis for us too. We fired him and just have a know-it-all in his place. He's very nice, great bedside manner, but he seems to ignore Odin's uniqueness. Odin's a zebra in a horse costume <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink">
 

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I think the thing that's pissing me off the most is just the fact that Dr. K (the surgeon) didn't seem to have looked at her stuff when we were there last. He didn't know anything about the fistula or the genetics or the sleep study. Nothing. And now he's making us come all the way there for ten minutes (well, ten minutes, maybe, with him; probably 30 in the waiting room) when I know that will just delay the inevitable scheduling of surgery, when then won't happen for weeks since his schedule is so whack-a-mole.<br><br>
Eh. I'm going to stop complaining. As you said, it's great there. And we will get to see Mr. Frog and the Butterflies, and the Fish. Yippee! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up">
 

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<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15420361"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">a zebra in a horse costume <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink"></div>
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Really good way to describe it!!! I'm going to steal that one! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"> That's so frustrating isn't it? I sometimes feel like people think I'm just a Wendy-Whiner, that she's not really "that bad." For instance, when I tell them that she's not gaining weight, people say, "Well, she looks tall to me." Um, yeah, for a two year old! Silly stuff like that. Same on the developmental front. Oh yeah, she's social and friendly and all that. But try to get her to touch something that she doesn't want to, or try to get her to put something in her mouth, and you'll see something really interesting <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/splat.gif" style="border:0px solid;" title="splat">.
 

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Wendy - Do you have a GI doc in Memphis that you like? Or one in Nashville you'd recommend? I saw Lazar when I was a teenager, but her office waits are brutal. Odin sees a different doc, but he doesn't look at the big picture.<br><br>
Grr! Maybe I should just bite the bullet and take Odin to Mayo where I get my GI care, which he'll need the same when he get older. For now, his needs are different so I don't want to do that big of a trip yet. Oops! Vent
 

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Steal away! Same frustration for me as we've had tremendous recovery with Odin's behavioral and emotional development in the past 2 months, but there are certain things that are so confusing/frustrating. Then, his physical stuff is only indicated by his small stature so few realize just how important his meds are or how closely I monitor his fluid intake and output.<br><br>
I feel really lucky that we've intervened with him so young, but it also makes his disguise much better. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/winky.gif" style="border:0px solid;" title="Wink">
 

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Discussion Starter #11
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<div>Originally Posted by <strong>OdinsMommy0409</strong> <a href="/community/forum/post/15420388"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Wendy - Do you have a GI doc in Memphis that you like? Or one in Nashville you'd recommend? I saw Lazar when I was a teenager, but her office waits are brutal. Odin sees a different doc, but he doesn't look at the big picture.<br><br>
Grr! Maybe I should just bite the bullet and take Odin to Mayo where I get my GI care, which he'll need the same when he get older. For now, his needs are different so I don't want to do that big of a trip yet. Oops! Vent</div>
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I didn't like Lazar at all. She took one look at VeeGee and, basically, said, "Huh?" I think that, like many of the Memphis docs, she didn't want to get involved with a child who already had a tube placed (VeeGee's adopted). It's why we ended up at Vandy in the first place, because no one would take her on. Originally we went for ENT and liked it so much that we go there for everything except her ped (Noel Frizzell).<br><br>
I LOVE LOVE LOVE Dedrick Moulton at Vandy. And I've heard really good things about Sari Acara in the same practice. He's on the <a href="http://www.vanderbiltchildrens.org/interior.php?mid=6550" target="_blank">CADET</a> (complex aerodigestive team) with Goudy and Fazili (a hoot!), VeeGee's ENT and Pulmo.
 

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<div>Originally Posted by <strong>AndVeeGeeMakes3</strong> <a href="/community/forum/post/15420423"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I didn't like Lazar at all. She took one look at VeeGee and, basically, said, "Huh?" I think that, like many of the Memphis docs, she didn't want to get involved with a child who already had a tube placed (VeeGee's adopted). It's why we ended up at Vandy in the first place, because no one would take her on. Originally we went for ENT and liked it so much that we go there for everything except her ped (Noel Frizzell).<br><br>
I LOVE LOVE LOVE Dedrick Moulton at Vandy. And I've heard really good things about Sari Acara in the same practice. He's on the <a href="http://www.vanderbiltchildrens.org/interior.php?mid=6550" target="_blank">CADET</a> (complex aerodigestive team) with Goudy and Fazili (a hoot!), VeeGee's ENT and Pulmo.</div>
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Yeah, I know Lazar as a patient rather parent, which are very different experiences. I've heard awesome things about Frizell. In fact, my brother almost joined his practice, but he understandably went a different route for more family time.<br><br>
Thanks for the recommendations. I will have to explore them soon depending on how Odin does or doesn't respond to his newest meds.
 

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<div>Originally Posted by <strong>AndVeeGeeMakes3</strong> <a href="/community/forum/post/15420423"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I LOVE LOVE LOVE Dedrick Moulton at Vandy. And I've heard really good things about Sari Acara in the same practice. He's on the <a href="http://www.vanderbiltchildrens.org/interior.php?mid=6550" target="_blank">CADET</a> (complex aerodigestive team) with Goudy and Fazili (a hoot!), VeeGee's ENT and Pulmo.</div>
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I think we've seen every dr in the GI practice so here's my lowdown on them. I LOVE dr Aurthur but she's a cold fish personality wise at first but she's a really down to earth no nonsense dr, and I love her. I also really like Dr. Martinez. If I had to start over with a new dr he's the one I'd pick for complex issues. He's pretty reserved but he can figure out solutions to some really random issues. So he's really good with the tough stuff and TPN and blood sugar stuff, or complex feeds. Moulton is really nice and very easy to talk to. He seems less "doctorish" in his approach and really listens well to what you're saying. I know a lot of people who really like Acara but he doesn't do a lot with my kid's kind of issues so I didn't like him as much as the others. We've seen a bunch more but no one else stood out much.
 

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Discussion Starter #14
You're right about Moulton. Sometimes I do wish he was a bit more proactive, particularly about her food intake issues. He's hard to get in to see also.
 

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Ironically, Martinez is the easiest to get in to see on short notice. For Arthur I have to wait at least 3 months to get a spot but with Martinez it can be weeks or a month. We only get him on loan for the issues that Dr Aurthur thinks he can handle best, so we don't see him as much anymore.<br><br>
Moulton just stuck in my mind as being really nice. We haven seen him in clinic, just inpatient. But he sat and chatted for a bit and wasn't staring at his watch the whole time.
 

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<div>Originally Posted by <strong>MotherWhimsey</strong> <a href="/community/forum/post/15420843"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Moulton just stuck in my mind as being really nice. We haven seen him in clinic, just inpatient. But he sat and chatted for a bit and wasn't staring at his watch the whole time.</div>
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Yeah, and I find that to be really valuable. Goudy's the same way. Also, it makes VeeGee not so scared of him. She'll still kick his teeth in, just a little more gently. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngtongue.gif" style="border:0px solid;" title="Stick Out Tongue">
 

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so, cute off topic story that kinda fits here. We were going to see neuro at the MDA clinic last week. They are usally in the basement of the research building righ across the street from the VA hospital and ambulance bay. I'm not sure what it's called. But it got totally flooded (I think that's where a lot of the water came from that flooded south garage, the ER, and Radiology).<br><br>
So they're temporarily at the 100 oaks sattelite and we'd never been there before. I told Linden what dr we were going to see and that it would be in a different building just to make sure that he was not upset when it didn't follow our usual routine. No train, no tacos for mom, and no friends from child life!<br><br>
We always ask him if he has any questions for the dr (it IS his body and he needs to have some control in appts) and he said yeh but wouldn't tell me what it was. So we're in the appt and I said "oh, yeh, and Linden had a question. Linden?" And he scrunched up his face and said "uh, did the building get flooded?" lol. poor guy was really upset that his clinic got washed away.
 
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