Good Questions, Bad Questions.

Karin has been getting more and more angry with me that I haven’t posted.  Well, I guess angry isn’t the right word but she knows how writing here is a great outlet for me so when a few days go by without a post she starts giving me a little shove here and there.  Sometimes I need that, which is why we work so well.

So, a few things and of course a picture just to get me back into the posting routine.

Last week both LITTLE MAMMA and TRICKY CUSTOMER both posted about some of the awkward and sometimes inappropriate questions they get asked about their kids when out and about.  They both made me think about my own experiences with that. For Liam with the trache and ventilator, and the wheelchair, and the fact that Liam will not speak or walk, I know that the stares and the odd questions just aren’t ever going away. And I’m ok with that. In fact, I’d rather someone ask a question even if it may be awkwardly asked or inappropriate because it at least gives us an opportunity to talk about Liam and to educate one more person about special needs and how to be more accepting of children no matter their ability.  It’s only the look of fear and avoidance as if Miller Dieker Syndrome or any other chromosomal translocation is contagious (they’re not) that do get to me.

Last year we were asked to be on a local morning TV show to help promote a fundraiser for Hasbro Children’s Hospital. While in the green room waiting for our chance to shine we mingled with the TAPS guys. You know, the Ghost Hunters, over coffee.  They were nice enough but the conversation stayed small.  The weather, their book, nothing at all about Liam which is fine. The world doesn’t revolve around us and not every chat with him in the room needs to be about him. After a few minutes the last guest of the morning, a gubernatorial candidate arrived with his assistant.  He took his coat off, laid it on the chair looked around the room and walked right over to us.

“So, What’s he got?” he asked matter-of-factly  while rubbing his hands together and leaning in to get a closer look at Liam’s adorable face. Just like that. You could tell by the looks on their faces that the people around us were worried that we would be offended by the directness of the question. But to be honest it was the exact opposite. I respected the fact that he wanted to know what was going on with Liam. Rather than worrying so much about being polite that he didn’t ask anything at all but instead just fired away.

But that’s when out and about. Because while I’ve been thinking about the questions from strangers for the last week or so I’ve also been thinking about the crazy questions from doctors that frustrate me to no end! Even when they aren’t directed at me.

On Monday Liam’s best buddy was admitted to the hospital. Our families met through our children’s similar special needs and have grown close over the last few years. While visiting them the other day I happened to be in the room while a med student came in to introduce herself to Dad. Nice enough lady but as this kid (and by extension his father) was getting more and more uncomfortable Doctor wanted to ask the most ridiculous questions.

When you see a kid with a trache you can safely assume that Mom and Dad know what a blood gas is. When you see said father performing suction on that kid’s trache (while the nurse stands by WATCHING?!) you can guess that dad knows what a ventilator is. When the kid is crying, grinding his teeth, and arching no matter what mom and dad do, and the parent asks repeatedly for the PRN pain meds that are ordered, the follow-up question “do you think he’s uncomfortable dad?” may come off as more than a little silly.

But Eric, You may ask,  You said yourself that she was only coming in to introduce herself, How was she supposed to know that Dad was aware of these things? To which I would respond that there is a big old binder called the patient’s Chart. It’s just chock full of information about the patient and maybe a quick glance at that before hitting the room may be in order. Hell, even if you can’t read the whole thing, how about the patient History & Physical. It’s generally only a few pages long and is prominently placed right at the front of the chart (I know these things as I spent 2 summers working in the medical records department of another hospital when I was in college) if you see that said kiddo spent the first 7 months of his life in a hospital the parents are probably pretty knowledgeable of these things.

Now I’ll admit that there probably are some parents out there that don’t know these things, that aren’t well versed in medical speak and maybe are so scared or in denial that maybe they do need things re-explained over and over again but to that I say utilize that nurse who is in the room a whole lot more than the doctors.  Would it be that difficult to get a read on the family by asking the nurse? Because while you as a med student may be asking these things simply for your own information, you are a part of a team. After one doctor asks there are three or four more that will eventually make their way in to the room to ask THE SAME DAMN QUESTIONS!!! Just being there is stressful enough as it is. Answering the same questions over and over again can turn stressful into infuriating.

But I’m digressing and don’t think that I get many Med Student readers to the blog anyway (although I do know of at least one Doctor). I guess I can just sum this whole rambly mess of a blog up with the fact that outside of the hospital I will answer any and all questions. Makes no difference if it’s from friends, family or complete strangers. Fire away! But get us back in the hospital and I have zero patience for stupid or repeated questions.

I didn’t really mean for this post to turn into such a rant but hey that’s what it turned into.  Here, I’ll make it up to you with another photo of the boy in his swing last weekend.

Talk to you later.

 

16 comments

  1. Well, first to the most important stuff … the pictures are adorable. Just so freaking adorable.

    The rest, you are preaching to the choir my friend.Although you are perhaps a little kinder in the acceptance of the stupid questions out in the world. I am fairly tolerant of most and really are in my element talking and educating, especially to the children but some questions, like “How retarded is she and what is her life expectancy.” Those I still have problems with.

    The hospital deal, zip, zero, nada in the patience department. The night Zoey was admitted for leukemia, do you know how many people I had to give her history to?Up until that day she had practically lived at the hospital. Her chart is extensive. Hit the high points people and leave the distraught mom and dad alone. And can we talk about the ” mom and dad ” thing?Why is it I hate that? Cuz I do. I really do.

    Once last thing , that night, journey through leukemia commencement night, We had a cocky and arrogant resident say to me, after I went through Zoey’s diagnoses, all of them, he looked at me, laughed a bit and said, ” Are you a doctor or something?” And laughed a little bit more. If I had been a little more emotionally stable at that point, oh boy, would not have been pretty.

    Okay, enough. I did it again. Monopolized. Sorry.

    1. Oh, Heather you can stick your sorry’s. You haven’t monoplized anything.

      “How retarded is she?” Hrmmm. I can say that we’ve been lucky enough not to hear any questions like that one. If and when we do I may need to ammend this post or write a whole new one provided the judge gives me bail or the prison gaurds allow me a laptop in the cell. I do worry about the real ignorance out there. Like I said we’ve been lucky.

      The whole “are you a doctor or something?” there’s a time and a place for that one especially if it’s a looong hospital stay. The night of admission? and with laughter?????? ooooh boy.

  2. Great post, know exactly what you mean. Our hospital visit was a great example of this. But also when I had a recent appointment with a surgeon (who seem desperate to operate on Samuel to drop his other testes) & asked me about 3 times in short space of time what the prognosis is for his life expectancy. I had to say that actually in some respects he’s beaten that and perhaps he should read the file that outlines his situation and also speak to Sam’s neurologist who ironically they share an office with!

    I think in some respects, despite Sam being almost 16 months now, I still feel that I’m finding my feet with all of this. But like as Zoey’s Mum said about it’s the questions about life expectancy & intellectual disability that I find hard to swallow. Despite saying that he’s a baby, baby or to be honest it being bleeding obvious, people still can’t take on board that development-wise Samuel is nil. It’s like they have to ask a couple more questions to clarify, to make sure.

    Oh and before I go, love the pics, what a handsome chap! xxx

    1. Thanks Zoe,

      Don’t you just love it when the Dr.’s share an office and you STILL end up repeating the same info over and over and over again! Do they never exchange information?

      By the way, Liam had a very similar issue (with his testes and eventually it all worked out without surgery), The more info we exchange about our boys the more similarities they seem to have. If only there weren’t an ocean in the way, we’d be having play-dates for sure.

      1. i know, I know, I know. I actually had a dream that we came over to visit you, was really nice. If you ever fancy relocating, Dorset in South West of England is particularly lovely! ; )

        xx

  3. well written my friend and thanks for the grub last night! The little guy is looking much better and after you left he really settled in and took a long nap. I can’t thank you enough for what you have been doing for us and for me in particular. Without someone like you to speak with and relate to I would probably be in a world of hurt. Thanks for all your support and guidance my friend!

    ps. soup and doritos were delicious

    1. Ah, you don’t have to thank me. It’s what we do.

      Believe me hanging out with you and your guy, even in the hospital is just as beneficial for me, and for the same reasons. Always nice to hang with someone who understands our challenges. I’m really glad that the little monkey got some good rest last night. Here’s hoping it continues so you guys can get home where you belong.

  4. Love the photos. Always a good way to start.

    Cheers for the link. 😀 Nice to be inspiring – ha ha!

    Doctors – Grrrr! If I have to go through the “he was born by induction at 38 weeks as I had gestational diabetes, it was a normal delivery, but he ended up in the neonatal unit blah de blah de blah ” one more time I will scream! As if, at nearly two that is even relevant. He has a chest infection/uncontrolled seizures/difficulty breathing – just deal with that first!

    And the flipping Pain Relief Police? OH MY GOD!!! I give my son ridiculous quantities of sedatives and anti-epileptics on a daily basis and you want to question my use of Calpol? I think not Mr-I-haven’t-actually-bothered-to-read-any-of-your-sons-notes-junior-doctor!!!

    And THEN… after watching (and doing ABSOLUTELY NOTHING about) three seizures asked ‘why did he go blue?’ It’s a seizure. It’s your job to know that. It’s why he’s here. He has a description of this attached to the FRONT of his file with an explanation of what to do. OPEN THE FILE!!! ‘people don’t normal go that blue during a seizure’ I FLIPPING KNOW!!! THAT’S THE BL**DY PROBLEM!!!!!

    AAArgh ….

    You see what you’ve started????

    *shamefaced* *hyperventilating* Sorry. Rant over!!

    1. Sorry to get you going like that but doesn’t it feel better to get it out? *deep breaths* *deep breaths*

      And that’s just the thing with all the questions, once you hit the hospital it’s as if all the caregiving work you do at home is forgotten. How could you possibly know as much ABOUT YOUR OWN CHILD as the pimple faced student how hasn’t even bothered to read the kid’s chart? As if you have to defend yourself and you view of what is going on.

      Aaargh. . . . is right.

      Oh and I’m happy to link by the way, after all it was your post that got my mind thinking about this one.

  5. Great post Eric,
    Communication is the best outlet and unfortunately our society does so little of it. Complaints and negativity are always communicated rapidly but positive encouragement or better explanations are not. If only more people took the time to listen, try to understand and communicate, the world would be so much better. Very few people will ever walk in your shoes, thus the great mystery factor exists. However, decent communication, explanation, patience and tolerance surely will help all to better understand the frailties of man.
    I keep up with your blogs and thank you for them.

    1. Roman,

      Thank you so much for reading. I agree with your assessment 100%. It really is all about communication and whether it is out of fear of being impolite or just being afraid of what looks “different” it’s a shame when people don’t want to learn about others. I consider it our job and duty to be open to telling Liam’s story. It’s one of the many reasons he was put on this earth.

    1. Aw c’mon Ken.

      First of all, aside from search engines more traffic is referred to this site from yours than any other place. Second of all yours is an opinion that I value and respect so blogjack away! You’ve got my permission.

      (Or at least throw it into an email so I know what you think 🙂

  6. I’m visiting from Ken’s blog — your son is absolutely adorable. What a face! I had to chuckle at this post, particularly the “rant,” part. I do love a good medical rant. It made me remember a fellow parent of a kid with a terrible seizure disorder who had been through the ringer for YEARS, but who was being questioned by one of the God-Neurologists at Johns Hopkins. The guy was ringed by his posse of residents and students and fellows, and he was sitting on a chair, all self-important, asking questions, etc. and expounding, etc., when my friend, a very sassy and very fired-up mother interrupted him and said, “Tell me something I don’t already fucking know.”

    It’s one of my favorite stories.

    I’m looking forward to learning more about your family and your sweet boy!

    1. And now its one of my favorite stories. That is fantastic!

      Thanks for visiting and for reading. In fact I already sort of “know” you as I’ve been lurking at your place for a little while now. I’ll properly introduce myself over there.

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