View Full Version : Off topic??? Burnt out.
01-26-2010, 09:37 AM
I was just wondering if you ever feel so burnt out on explaining and reexplaining your child's condition. Thank God Gabriel is doing so well. He has his palate repair and stoma revision scheduled for Feb. 16 and I hope his dysphagia will get better and he will no longer need thickened liquids and such. Anyone have any experience with that? Gabe has Pierre Robin Sequence, had a jaw distraction and trach removed some months ago. Anyhow, I just find myself explaining things so often and sometimes I just don't want to talk about it. I'm not ashamed or embarrassed, I feel quite the opposite. Blah. :(
01-26-2010, 09:50 AM
I think I understand, you just get tired of re explaining the whole story. That is what Caringbridge is for, but it did not really help us either. The very worst for us is that every doctor will ask Evan when he will get his trach out. Then he has to explain how his esophogas does not work and he does not know. It is like read your charts!
01-26-2010, 10:37 AM
I feel your pain. we got something detailed typed up to give to doctors and healthcare professionals so we don't have to repeat ourselves at every admission. It is hard explaining to family, friends and the inquistive people at supermarket checkouts though - I just say Sam has a rare disorder and leave it at that. We used to thicken Sam's liquids before he got his trach as his swallowing was so bad - it was so thick we had to spoon juice into him! No fun! Hope the surgery improves things - good luck!!
01-26-2010, 11:37 AM
Yes! Especially because it's complicated. I do get annoyed having to explain it to residents prior to the actual dr. I don't mind as much for new friends. But the casual encounter at the park or grocery store. :indifferent: I try to say "It's complicated." and leave it at that, because it is. Very few people know what a chromosome transolation is, or the cerebellum, a trach or understand the anatomony of the airway etc.. Since her condition isn't a simple syndrome, it's too much to explain. Often they think I'm an idiot and don't know what it is that my kid has and still press even after I give my standard "It's complicated." response. But it is helpful to be prepared with a simple standard response. I do have a card with her blog address on it that I give out when I think the person really wants to know and I'm just not in the mood to talk about it (depending on if I like the person.)
Yep. It's one of the number one reasons I HATE dealing with new "medical" people... or strangers in general. It's impossible to sum everything up in a few short sentences, which I think is what they expect. We recently had a student PT come with our regular and he asked about Mackenzie's history. How do you quickly explain everything to someone with no respiratory/indepth medical knowledge? You just can't. And of course if you blow off the question you look like a major jerk.... or worse, like someone who doesn't know her child's med history. No win situation all around.
:hug:s, :hug:s, and MORE :hug:s
01-26-2010, 01:32 PM
Our response in a couple of cases where the people we're talking to have been overly rude has been, "the discharge summary from the hospital is a short novel - if you have a medical degree, have a couple hours to read it, and are willing to sign a HIPPA waiver, we can make a copy for you" - then again, depending on my mood, I'm tending to be cranky about these things lately. :)
"It's complicated" and "he was a preemie" are common 'polite' answers here. Kids who asked when we were out playing a couple weeks ago were told, "oh, it's extra oxygen to help him breathe"
Less polite responses have also included, "nothing's wrong with him, what's your problem?" and "it's a fashion statement"
I have to say, I kind of like Susan's idea of a card with a blog link. I'd just have to figure out which blog to give them (probably the sanitized one rather than the in-depth family one)
I'm with you there-you know what gets me...forms. I just filled out Mitchell's Kindergarten form and it had a space for about 5 words and it was "Medical history" REALLY? I should just copy his 5 pound medical file and send that. HERE-HERE'S his history. :)
My point-I so know what you are talking about.
We are often asked by kids.. since we are at the elementary school so much.. my answer to them is usually, it is to help him breathe..... and for their why???.. cause his bones in his chest arent formed right... I have found that most are happy that they get an answer, and will leave it at that (funny when a new kid asks and every other kid in the area can -and does answer them before I get a chance. )
most adults get ... he has Jeunes syndrome ; or just "he has a form of dwarfism".. (and yes even docs need the dwarfism answer-not many understand or know what Jeunes is)
I am with Kate.. I hate forms, and have made up a word doc that has all of his past surgeries; past admits; med diagnosises; meds he is on; trach size, and vent settings..ect... . the usually asked questions when we go to any doc appt, or see any new specalist (and our clinic requires it filled out with each appt??).. I take a copy and fill in " see attached" on the paperwork:)
I mean, really it is kinda hard to fill in all the paperwork and try to entertain a toddler at the same time.... And has been a huge helper with ED visits, since everyone coming into the room asks the same questions; and I am usually busy trying to calm Joseph and dont focus on alot of the questions.
01-26-2010, 04:35 PM
We were outside in the front yard yesterday and I actually grabbed Ike and ran inside in order to avoid talking to a woman who was out walking with her infant. I saw the look in her eye - the "hey a baby we can play with!" look and I was just too tired to stand out there, explain everything, keep our distance to avoid germs, etc. It was incredibly rude of me to run like that, but some days, ugh.
And I am so with everyone on hating to explain things over and over to the residents at the hospital. Those shiny haired 12-year-old doctors come in the room one at a time and I have to keep.repeating.the.story. It makes me want to scream. And sometimes I do.
I love the idea of having his medical history typed up and ready to hand out. I am SO going to do that.
01-26-2010, 11:40 PM
Yes, so tiring. We did not have to deal with residents while we were in patient for 16 and 1/2 months it was on our chart we were staff. But now that we are out we have to deal with them. You don't want to explain everything but you have to it seems. Or you are considered a jerk. I really love it when you say medical terms like laryngeal tracheal cleft of the third degree and you get a blank stare I just feel like why bother.
I usually am very patient with questions from the public especially kids. But some adults can be down right rude. Last summer we were out lots and when some lady asked what is that thing around your kid's neck. I just wanted to reply "Oh I'm trying out a new shock collar. If she doesn't listen I just press a button and she receives a little jolt." But I refrained. What's that thing? get real old 20 times a day.
Sorry this turned into a rant for me :)
01-27-2010, 02:57 PM
Great Ormond Street Hospital in London have this Family File (http://www.ich.ucl.ac.uk/gosh_families/coming_to_gosh/family_file/FF_Basic.pdf) which you can download and fill in. It means you have all this information at your fingertips to hand to medics when you need to. It's very detailed, so you could always remove the blank forms you don't need but it helps to get all your stuff in order. Hope you find it helpful.
My standard answers to various questions are:
"it's to help him breathe"
"he's got a tiny ribcage and heart problem"
"he's 5 1/2. He's got a type of dwarfism"
Beyond that, it's not anyone's business. I don't get offended by the "What's wrong with him?" because it's usually asked by people who are concerned rather than offensive. People who stare, I just look at them and smile and wave. They get the point. I really have to do something about my evil grin........
01-27-2010, 10:46 PM
Sorry, but I just have to laugh because we had to take Ayden to a small town ER on Xmas eve for an ear infection and I just gave them 3 minutes worth of information... I really didn't want to take 30 minutes when it would take 3 minutes to tell me if he had an ear infection.
It can get old, other than that experience, we have seen the same docs for 3 yrs, so there hasn't been too much explaining. :) (just as I say that, I know I have to make a GI appt with a new Dr... yippy..)
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