lfig
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Post by lfig on May 14, 2019 8:56:47 GMT -6
tgrimes ugh. So sorry for all the frustrations. I think I understand what they are saying with the colonization, I’m just baffled why this is suddenly the magic answer when it’s been going on so long. Like, why didn’t they come up with this probable cause long ago? Like 43 fucking EI’s ago! I know that in the case of Sierra’s shunt, if the tubing (which runs from the proximal catheter in her brain all the way down to the distal catheter in her belly) gets contaminated with infection it has to come out. There is no treating it to get rid of it. So I would assume it’s the same kinda thing with the ear tubes.
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tgrimes
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Post by tgrimes on May 14, 2019 9:00:32 GMT -6
tgrimes ugh. So sorry for all the frustrations. I think I understand what they are saying with the colonization, I’m just baffled why this is suddenly the magic answer when it’s been going on so long. Like, why didn’t they come up with this probable cause long ago? Like 43 fucking EI’s ago! I know that in the case of Sierra’s shunt, if the tubing (which runs from the proximal catheter in her brain all the way down to the distal catheter in her belly) gets contaminated with infection it has to come out. There is no treating it to get rid of it. So I would assume it’s the same kinda thing with the ear tubes. Thank you for telling me this. |
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tallb
Amethyst
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Post by tallb on May 14, 2019 9:06:05 GMT -6
Eeash tgrimes I'm sorry. Those are high deductibles, our insurance system is a total disaster. 43 EI is insanity. |
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tallb
Amethyst
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Post by tallb on May 14, 2019 9:11:52 GMT -6
Hi hi - fun excitement last night while mh was at Costco buying frozen stuff, I discovered our basement freezer isn't keeping stuff cold. Having trouble determining if door was open or if not working, but I shoved as much as I could in the upstairs fridge and anything full defrosted meat is being tossed. Now I need to schedule maintenance I guess, boo.
We put in J's last day for prek. Taking 2 days off before the start of k so we can each do a one on one day with him. His best friend is doing the same and we didn't want him to be the very last one to leave.
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jewels
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Post by jewels on May 14, 2019 9:13:01 GMT -6
tgrimes , I hope they get back to you quickly. And I REALLY hope the Dr is correct and this fixes H's problems. As to the cost, if you have a 2500 deductible, then 20% after that, what's your Max Out of Pocket? Should you hit or be close to that? Why do you need to pay the $4000 after that? I'd think you would probably hit your MOOP by then, no? The kids are on my insurance plan. So the family deductible is $5000. My out of pocket maximum is $11,000. Individual deductible is $2500 with a $5500 out of pocket max. Ugh that sucks. For my insurance there's no individual deductible/MOOP, so once one member hits it, the whole family levels up, essentially. I'm sorry that on top of everything else, you also have to worry about finances |
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tgrimes
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Post by tgrimes on May 14, 2019 9:24:42 GMT -6
The ENT's nurse called me back. She.....was not helpful. All she said was that there have been previous cases where they've replaced the tubes and it was effective. She couldn't answer any of my questions and didn't even know that the immunologist had spoken to the Dr. She'll call back after she talks to the dr.
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cagoldi
Opal
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Post by cagoldi on May 14, 2019 9:42:46 GMT -6
tgrimes it does make sense, and wouldn’t be surprising if they were colonized, but what about the previous set? I doubt they want to posit that both sets were contaminated? And he does have prophylactic ABX following surgery anyway so if those didn’t work before, why would we assume they would work any better now? I’m going to check the PM you sent me awhile back about his labs but remind me why they said Specific Antibody Deficiency is rules out completely? Because you can definitely be immunodeficient and have *near* normal antibodies. So, yeah, I think you’re still right to be a bulldog on this because even IF it’s set of tubes is contaminated, what about the literal dozens of infections he had before them? They are still missing something.
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cagoldi
Opal
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Post by cagoldi on May 14, 2019 9:46:38 GMT -6
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cagoldi
Opal
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Post by cagoldi on May 14, 2019 9:50:53 GMT -6
Happy Tuesday!
Infusion last night had me feeling like I had been hit by a bus, but I felt great this morning so got back at it with yoga and BBM.
X has feeding therapy today, and he’s been doing well with that.
After we get the kids in bed I’m taking my friend out for margaritas whilst wearing our stretchy pants so she can either laugh or cry. Maybe both. I just hope getting out will do her some good.
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tgrimes
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Post by tgrimes on May 14, 2019 9:54:55 GMT -6
tgrimes it does make sense, and wouldn’t be surprising if they were colonized, but what about the previous set? I doubt they want to posit that both sets were contaminated? And he does have prophylactic ABX following surgery anyway so if those didn’t work before, why would we assume they would work any better now? I’m going to check the PM you sent me awhile back about his labs but remind me why they said Specific Antibody Deficiency is rules out completely? Because you can definitely be immunodeficient and have *near* normal antibodies. So, yeah, I think you’re still right to be a bulldog on this because even IF it’s set of tubes is contaminated, what about the literal dozens of infections he had before them? They are still missing something. He had a good response to the prevnar so that would rule it out, right? |
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nam2013
Emerald
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Post by nam2013 on May 14, 2019 10:34:47 GMT -6
tgrimes all superlatives feel stupid and inadequate for your situation. I’m speechless. And so sorry.
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klong11
Ruby
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Post by klong11 on May 14, 2019 10:42:17 GMT -6
Just bought movie tickets for this Sunday for some Daniel Tiger thing. Then the following Sunday for the Aladdin family party. Just me and Cadence, as per usual.
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Post by peachsmama on May 14, 2019 10:44:50 GMT -6
Guess A felt bad for the mothers day fiasco with his parents. There was an Ulta gift card on my steering wheel this morning.
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cagoldi
Opal
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Post by cagoldi on May 14, 2019 10:52:37 GMT -6
tgrimes it does make sense, and wouldn’t be surprising if they were colonized, but what about the previous set? I doubt they want to posit that both sets were contaminated? And he does have prophylactic ABX following surgery anyway so if those didn’t work before, why would we assume they would work any better now? I’m going to check the PM you sent me awhile back about his labs but remind me why they said Specific Antibody Deficiency is rules out completely? Because you can definitely be immunodeficient and have *near* normal antibodies. So, yeah, I think you’re still right to be a bulldog on this because even IF it’s set of tubes is contaminated, what about the literal dozens of infections he had before them? They are still missing something. He had a good response to the prevnar so that would rule it out, right? Right, thank you. Yes, if his IGg was completely fine then he’s probably okay. |
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mwhip
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Post by mwhip on May 14, 2019 10:59:57 GMT -6
Omg tgrimes I would be so frustrated if I were you...I dont know how you dont yell at people when you talk to them. Like, look his history up and do something to make this right! |
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Post by snoopmommymom on May 14, 2019 11:08:29 GMT -6
tgrimes I was going to ask the same thing cagoldi did. Does the immunologist know this is already his second set of tubes? If so and both were “colonized,” wouldn’t he/she think there could be an underlying issue that is causing the tubes to not successfully prevent infection? Also, what ended up happening with the inside of his mouth? Didn’t one of his Dr’s find a hole or something? I assume the ENT have already confirmed that his inner ear shape is anatomically correct?! Sorry for all the questions. I feel for you and want answers for you and H.
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Post by lahdeedah on May 14, 2019 11:08:39 GMT -6
tgrimes , I hope they get back to you quickly. And I REALLY hope the Dr is correct and this fixes H's problems. As to the cost, if you have a 2500 deductible, then 20% after that, what's your Max Out of Pocket? Should you hit or be close to that? Why do you need to pay the $4000 after that? I'd think you would probably hit your MOOP by then, no? The kids are on my insurance plan. So the family deductible is $5000. My out of pocket maximum is $11,000. Individual deductible is $2500 with a $5500 out of pocket max. Any chance YH will have decent insurance with the new job. |
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Post by lahdeedah on May 14, 2019 11:12:07 GMT -6
The ENT's nurse called me back. She.....was not helpful. All she said was that there have been previous cases where they've replaced the tubes and it was effective. She couldn't answer any of my questions and didn't even know that the immunologist had spoken to the Dr. She'll call back after she talks to the dr. Is it an option to remove the tubes and not replace them? Maybe wait it out and see how he fares without them? Idk. Just trying to think of any scenario to help this poor kid not deal with any more EIs. |
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tgrimes
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Post by tgrimes on May 14, 2019 11:13:49 GMT -6
The ENT's nurse called me back. She.....was not helpful. All she said was that there have been previous cases where they've replaced the tubes and it was effective. She couldn't answer any of my questions and didn't even know that the immunologist had spoken to the Dr. She'll call back after she talks to the dr. Is it an option to remove the tubes and not replace them? Maybe wait it out and see how he fares without them? Idk. Just trying to think of any scenario to help this poor kid not deal with any more EIs. With as many EIs as he's had, I believe the tubes are necessary. |
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tgrimes
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Post by tgrimes on May 14, 2019 11:14:48 GMT -6
The kids are on my insurance plan. So the family deductible is $5000. My out of pocket maximum is $11,000. Individual deductible is $2500 with a $5500 out of pocket max. Any chance YH will have decent insurance with the new job. No idea. He starts Monday and I will be looking into it. (i will also be checking if a vasectomy is covered) but usually you have to wait 90 days for insurance to kick in. |
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Post by lahdeedah on May 14, 2019 11:18:24 GMT -6
Hi! I’m back at work. I started feeling better after I took ibuprofen last night. But MH and M has it now, so it must be viral. I think M2 was patient zero and it hit us all days after.
Checked my email this morning and the place I interviewed with a few weeks ago emailed me to offer me the job. I’m excited, but I think it’s so weird to make an offer in an email. He said once he found out salary specifics he would call me, so I sent an email back saying I would be pleased to accept once we work out salary. I’m just happy to have some cash flow once I move. It’s as needed work, so I’ll have a number of off days. I think that’s the part I’m more excited about.
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Post by lahdeedah on May 14, 2019 11:19:17 GMT -6
Any chance YH will have decent insurance with the new job. No idea. He starts Monday and I will be looking into it. (i will also be checking if a vasectomy is covered) but usually you have to wait 90 days for insurance to kick in. Oh wow. I think ours has been 30 days. |
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tgrimes
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Post by tgrimes on May 14, 2019 11:20:51 GMT -6
tgrimes I was going to ask the same thing cagoldi did. Does the immunologist know this is already his second set of tubes? If so and both were “colonized,” wouldn’t he/she think there could be an underlying issue that is causing the tubes to not successfully prevent infection? Also, what ended up happening with the inside of his mouth? Didn’t one of his Dr’s find a hole or something? I assume the ENT have already confirmed that his inner ear shape is anatomically correct?! Sorry for all the questions. I feel for you and want answers for you and H. The immunologist should know this is his 2nd set of tubes since it's in his file. His last set of tubes came out on their own during 2 separate ear infections. The inside of his mouth ordeal sort of remains a mystery. The 1st ENT we saw had never seen anything like it and that's when she scoped him and took pics. She said we shouldn't be able to see the light in his mouth from his nose. The follow up with her associate that specializes in palates said the pics she took were blurry, the huge black spot was gone and his hard palate felt fine. |
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lfig
Sapphire
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Post by lfig on May 14, 2019 11:29:51 GMT -6
tgrimes I was going to ask the same thing cagoldi did. Does the immunologist know this is already his second set of tubes? If so and both were “colonized,” wouldn’t he/she think there could be an underlying issue that is causing the tubes to not successfully prevent infection? Also, what ended up happening with the inside of his mouth? Didn’t one of his Dr’s find a hole or something? I assume the ENT have already confirmed that his inner ear shape is anatomically correct?! Sorry for all the questions. I feel for you and want answers for you and H. The immunologist should know this is his 2nd set of tubes since it's in his file. His last set of tubes came out on their own during 2 separate ear infections. ; I have had, more than once, to remind a dr of things I felt like they should know had they properly reviewed her records. Like when we went to the sleep specialist and she recommended removal of tonsils and adenoids... ummmm...we already did that and it didn’t work, next idea please. |
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Post by lahdeedah on May 14, 2019 11:31:15 GMT -6
Is it an option to remove the tubes and not replace them? Maybe wait it out and see how he fares without them? Idk. Just trying to think of any scenario to help this poor kid not deal with any more EIs. With as many EIs as he's had, I believe the tubes are necessary. Yeah, I’m grasping at straws. Just thought maybe since he was still getting so many with the tubes in that maybe it was worth a shot. I’m sorry for all this trouble and financial burden. |
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tgrimes
Diamond
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Post by tgrimes on May 14, 2019 11:37:47 GMT -6
The immunologist should know this is his 2nd set of tubes since it's in his file. His last set of tubes came out on their own during 2 separate ear infections. ; I have had, more than once, to remind a dr of things I felt like they should know had they properly reviewed her records. Like when we went to the sleep specialist and she recommended removal of tonsils and adenoids... ummmm...we already did that and it didn’t work, next idea please. Yeah, me too. Lol. Like, did you read the freakin file? That's why I really want to talk to the ENT. |
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tgrimes
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Post by tgrimes on May 14, 2019 11:38:26 GMT -6
With as many EIs as he's had, I believe the tubes are necessary. Yeah, I’m grasping at straws. Just thought maybe since he was still getting so many with the tubes in that maybe it was worth a shot. I’m sorry for all this trouble and financial burden. I'd just hate to spend money on taking them out, just to have to spend money again to put them back in. KWIM? |
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vino
Opal
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Post by vino on May 14, 2019 11:45:37 GMT -6
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trtlcrzy
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Post by trtlcrzy on May 14, 2019 12:03:26 GMT -6
Ugh, tgrimes. I hope you get some answers one way or another and whatever the solution is helps the problem. lahdeedah congrats on the job offer! |
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Post by lahdeedah on May 14, 2019 12:04:15 GMT -6
Yeah, I’m grasping at straws. Just thought maybe since he was still getting so many with the tubes in that maybe it was worth a shot. I’m sorry for all this trouble and financial burden. I'd just hate to spend money on taking them out, just to have to spend money again to put them back in. KWIM? Yeah, you’re right. Better to do it all at once. |
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