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Raising Special Needs Kids Raising Special Needs Kids

My major vent for the day *may contain strong language*

Posted by on Oct. 11, 2013 at 1:50 AM
  • 42 Replies

So today was just one of those days where it was the last straw that broke the camel's back. I am just so utterly irritated at so much. I had to pull the computer out for this one cuz it was too much to type off my phone. 

 

So most all of you saw the pic I posted (yesterday?!) of Ty's belly and how awesome it looks. I have worked my ass off to get it to look like that! Hell, I have worked my ass off to get Ty to look like this:
 
Totally normal and healthy! This is NOT easy!!!! We had another meeting with a new nursing agency (who this post is aimed at, so the you in this post is aimed at this damn nurse and other idiots like her we encounter) and it was just a supervisor going over all of his history and needs and blah blah blah. But the damn nurse, I just ugh, everything that came out of her mouth made me and dh want to slap her! SHe just kept going on and on about how he looks so healthy and great and seems totally fine. But she's just being a bitch about it, like we are just stupid paranoid parents and full of it or some crap and honestly the whole time she seemed baffled as to how we qualified for nursing. Cheez its I work my ass off so Ty looks so god damn normal and healthy! ANd the last time I checked, no human being had the capability to see how trashed his body is on a cellular level with the naked eye! So yeah, on the outside, he looks freaking fantastic, but NO ONE knows how trashed he is on the inside! His looks are his worst enemy! Its part of the mito disease! They LOOK fine! But they are DYING on the inside! Which brings me to another issue. The drs all treat him as a mito patient, he fits it to a god damn T, yet they have not yet put the official DX down. We know soon they will end up giving him the clinical dx, its just a bunch of red tape crap they need to do first and ugh, I dunno how to explain it. But here we are trying to explain why Ty has hypoglycemia & hyperglycemia with NO explanation outside of what his drs love to tell us, "it's part of mito!" well thanks doc, but until that is an official dx, outside people on his case like ER's and nursing agency bullshit look at us like we are thr crazy ones when we hav eno explanation to tell them! Its the unwritten dx, the excuse for EVERYTHING he deals with. They all agree he walks like a duck, quacks like a duck, is a freaking duck, but they are calling him a damn cow! Same with his dysphagia, Ty's muscles fatigue, so by the end of the day he will choke and is at risk of aspiration. Its is not a common way for dysphagia to present or act but they even have it on a modified barium swallow study that is what happens with his muscles, they weaken as he eats and drinks and then he aspirates. How do the drs explain it you ask? "Its the mito!" Oh, but he isn't "officially" dx with mito yet? Yeah, welcome to my world of unexplained bullcrap! You have an issue with our drs, take it up with them, not me! Then we move on to his autonomic dysfunction and she starts giving us crap about him never being outside, no Ty is RARELY ever outside. We live in SOUTHERN AZ! Its hotter than hell here! Walking literally 10ft from our front door to our car does Ty in! So everything he does, he does inside. Oh, how does he handle school then you ask? Well he goes in the mornings and we allow him the 5 minutes they get for recess since school is only 3 hours and you know what? By 9:30 am every damn day Ty is DONE! Flushed, sweaty, nauseous, fatigued, does nothing but lay on his desk! Yeah, but we have no choice and we are working on it! Why does he have this you ask? Oh you know, ask the drs: "It's the mito!!" Yup! Then you ask why it took his drs 5yrs to figure out his GI system was so severe?! I DON'T KNOW! Oh and you then ask how it got this way, yeah, ask the drs! "IT'S THE MITO!!!!!!!!!!" 


You think I LIKE this?! No, his life is HELL! Our life is HELL! SO yeah, the 5 minutes you walk into my home and make all these assumptions is 100% completely accurate! Ty is really a 100% normal and healthy child!!!! Because in 5 minutes, you are able to make that ACCURATE assumption! 


/end rant

And I am so sorry. I am just so done with this crap. We have people coming in that are supposed to make our life easier and instead, they are invasive and idiotic and rude and make my life more hellish which is damn near impossible most days!

by on Oct. 11, 2013 at 1:50 AM
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Replies (1-10):
Irislady17
by Bronze Member on Oct. 11, 2013 at 3:15 AM

No advice just hugs. And your son is absolutely adorable! I love the batman shirt.

darbyakeep45
by Darby on Oct. 11, 2013 at 5:05 AM

Hugs mama!  I would NOT have tolerated that from anyone coming into my house.  I would have given her a piece of my mind, telling her that she won't speak to me that way about my child that she's known for all of 5 minutes.  Hope you won't use her as a nurse!  

mandee1503
by Amanda on Oct. 11, 2013 at 8:10 AM
*hugs* how frustrating!
Momof4AEMW
by Silver Member on Oct. 11, 2013 at 8:23 AM

I would be very leary about that lady watching my kid.  She's in the wrong business to act that way about her patients!!  

Hugs Mama!  And his pic is adorable!! 

Mipsy
by Chelle on Oct. 11, 2013 at 8:36 AM
Well luckily she won't be watching him, she's just the supervisor *eyeroll* but ugh. I just kept telling myself to ignore it, get through it, and I'll live. Then it went on for 2.5 hours! Took up half my day! Which is why at midnight I just needed to get it out
mlogsdon
by on Oct. 11, 2013 at 12:08 PM
1 mom liked this
Wow!! I'm so sorry. I'm glad she won't be the one watching him. It sucks that she's the supervisor though. If there are any issues with the actual caregiver it might be difficult :-/
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jjamom
by Michele on Oct. 11, 2013 at 12:58 PM

For 2.5 hours?  Ugh, I'm so sorry you went through that.  I hope the actual nurse is a lot more understanding.  Geez...

DDDaysh
by Bronze Member on Oct. 11, 2013 at 1:01 PM

*Hugs*  I'm sorry they are giving you such a rough time.  I can't even imagine how frustrating it is when someone acts like Ty is "just fine" after all the crap you've been through.  

Heck, I know how frustrating it is when certain doctors would look at me like I was crazy when I'd bring DS in.  I swear some of them thought I had Munchausen (or however you spell that!).  More than once I had to take him to the ER for strep (a serious recurring problem with him).  He'd show no signs of it except fever that would spike really high but go away if you gave him tylenol.  So, he'd have 105 fever, I'd give him tylenol, and by the time we'd get to the ER it would be right around 100 and they'd act like I was insane when I'd say he needed a strep test.  But...  he always had it.  Heck, it got to the point where I bought a rapid strep test kit for the house because I was scared that if I took him in and it wasn't strep they would call CPS or something.  

Just remember that no one is every going to know Ty like you do.  He's a fighter.  You're a fighter.  You'll get through this.  Think of every doubt those nurses are giving you as a victory!  

Linagma03
by Gold Member on Oct. 11, 2013 at 7:58 PM

 I'm so sorry you had to go through all that crap. Big Hugs.

SamMom912
by Silver Member on Oct. 11, 2013 at 8:11 PM

I read it all... Im sorry.. But damn is your boy a cutie! 

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