One of the so-called professionals, who helped measure Son for this spinal jacket today (it’s like a brace/splint thing that he has to wear for three months), also told him the following:
- that the muscles around his spinal fusion would stop working;
- that he wouldn’t be able to go to the concert he has been hanging out for;
- that he should stop riding his motorbike permanently;
- that his spine was still twisted;
- that we would have an appointment with the surgeon in a month’s time;
- that he should stop doing anything strenuous;
- that he should never play any contact sport, even for fun;
- that his spine was still twisted;
- that he would have trouble with his back as he got older;
- that he would need physiotherapy forever;
- that he should ask the surgeon any further questions at the appointment;
- that his spine was still twisted
I arrived at the hospital just after this incident and, as soon as Son saw me, he began to cry. “I’m a freak,” he said and, lying on his back, the tears dripped into his pillow until I found a tissue, after which the pillow got soaked.
So, holding his hand, I decided to contradict every single thing that so-called professional said, and I told Son this:
- that the muscles around his spinal fusion would keep working;
- that he would be able to go to the concert he has been hanging out for;
- that he should keep riding his motorbike permanently;
- that his spine was untwisted;
- that we would ring the surgeon before a month’s time;
- that he should lift weights;
- that he should have fun;
- that his spine was untwisted;
- that he would never have trouble with his back as he got older;
- that he would need physiotherapy for a short time only;
- that he should ask the surgeon all of his questions at the appointment;
- that his spine was untwisted
When I find out who that twisted, so-called professional was (not easy in the whirlwind world of a hospital), I will politely ask her to shut up before she wreaks havoc on any other kids’ dreams.
jmgoyder 
This makes me so angry!
I just spoke to him on phone (now I’m home again and so far away) and he’s okay. But, yes, I am very angry and it takes a lot to get me that way. I am going to find out who this woman is and make a complaint.
Good idea. It’s not about retribution, but patient recovery.
Wise – thx
As someone employed in a medical profession (animals), I am always frustrated with the poor communication techniques of other “professionals” when they are delivering medical news. Some sugar coat it so much you don’t know what the message really is….others deliver bombs and wait to hear back after the dust settles. I would seek that person or the supervisor and ask for clarification first then discuss that method of delivering information. The professional probably doesn’t even realize how they sounded.
I think you’re right – she doesn’t realise how ‘bomby’ she is; I will do as you suggest (but I still want to punch her!)
Oh Julie, How dare her! I wonder how much schooling this so called professional has? Intern, resident?
I know it was unlikey the actual surgeon. When my daughter had brain surgery we had to demand to speak to her neuro-surgeon.. As well as when I had my cervical fusion in 2000. The big bucks guys/gals come in do their craftsmenship and unless they are demanded to be present they will not.
Any lunk head would have had more sensitivity than that moron. I’m sorry. This kind of stiff is so unnecessary.
Good on you for re-arranging what was said. Who said he cannot go to a concert. I mean really, what does this person now about your son? Really. I get so angry when kids are messed with.
I’ve decided to calmly and carefully complain – wish me luck!
Okay, you’ve been through way worse stuff so I get it now – I need to demand some information – thankyou Baroness!
Absolutely Momma Lion, go calmly and stealth like! To find out why the insensitive person who did the harm is treating patients like this.
If a person has come far enough in need school to being doing post – op rounds and delivering news such as this person did to your beloved son than I don’t buy she did not know what she sounded like. I promise you this is not a quirk on her/his part.
You are right to make a complaint. The most important part of any kind of recovery is attitude and belief there is a purpose for going through al the hard work.
How dare her try to take that hope away. I again ask just who does she think she is? (not of you friend) I doubt a parent that is for sure.
I am like you Julie, it takes a lot to get under my skin, but tread in any way on my children, grandchildren or anyone’s child and I’m hitting the roof. My husband always tell our family, friends and strangers if a child is messed with Momma Toni is ready to pounce.
If I can be of any help please let me know. You know that having support is paramount for you is well. I don’t know what I would have done without my family and friends when our daughter was in ICU.
Go get em girl! Your son knows he has you for his champion, that is what a mother’s love is all about. And it never stops no matter how old they are.
(sorry for the letter. : )
I’ve calmed down now but thank you, Baroness!
Sorry. What a downer, but your son has you, and he sounds pretty neat himself. He’ll get there.
Yeah, you are right! Thank you.
$!#!!<#$! (expletive)
I would definitely find out who that so-called professional was and make a formal complaint in writing. There is no way any person associated with such serious surgery (or any surgical procedure for that matter) should make such statements. I think it's imperative that your Son sees his surgeon asap – one can only hope your Son's Surgeon can un-do this damage before it becomes imprinted on your Son's mind permanantly).
What a callous, insensitive, bbbbbbbbbbbbbbbaboon (sorry, that's insulting to the baboons).
I have never heard of such a serious lack of compassion and sensitivity to a young man's self esteem and hopes for the future.
Gosh, even your Son's Surgeon could not know the exact final result at this stage. Son needs all the encouragement, support, love and positive thinking to get him through the post surgery trauma to his Body, let alone his Mind and Spirit.
What an absolute ……………..(words fail me).
Thanks so much, Vicki
I know who it is now – good advice to ask for surgeon to visit Son.
Julie
I read it, couldn’t believe it, was angry, cried, wanted to say something to you, but your other lovely friends have said everything I would have…
Professionalism, and concern for the patients mental well being were apparently taught on the days she played hookie from school?
xo, Lynda
Thanks Lynda – love what you say about hookie!
Julie
I would make sure it is what she said and not what he heard. I think this is best. People misunderstand me all the time, especially when they are in a compromising condition. Goodness, it does sound quite irresponsible.
Thanks Michael.
I’ve found out that it was an OT and I’ve come across her before during appointments with the surgeon. She is always blunt and abrasive. I probably won’t make a complaint; instead I will try to ring her and have a little chat – hehe!
Julie
She’s likely to be defensive, condescending and create some additional level of disturbance in your emotional life. It may be best just to work with Son to help him understand more clearly what the OT was doing and why she may have said what she said. It may also be a good time to teach him to be more assertive and to ask questions. He is young, but that kind of skill will come in handy some day. Focus on what you can change. It may not be important enough for you to add another layer of stress to your already stressful life. Cheers!
Yes, I will not pursue the matter further. I rang the surgeon’s secretary and told her Son had been upset by one of the people who measured him for his splint (I had decided not to mention her job or name even though, by then, I knew both). Later on the surgeon rang and did, in fact, contradict some of the things she had told Son. One of the best things he said was that Son himself would be able to determine what he could and couldn’t do physically. So all is well. Reading between the lines of what he said, I believe this person will be told. Unless of course she is the surgeon’s girlfriend!
people are always misunderstanding what i say . . . i never get used to it . . . it is likely that she said what he told you but i just like people to ask me first before they believe everything they hear 🙂 . . . sometimes i think i should record everything i say . . . maybe Son can use the recorder on his cell when he talks to her again . . .
Interestingly, Son’s surgeon records all of his comments on some sort of device. What he had done during every appointment is have a chat to us, then record it on this dictaphone thing to be typed up.
it may be a good idea to instruct the OT to record her discussions with patients. then she will be more selective with what she says 🙂
Well I hope the surgeon instructs her – I can’t.
yes thats what i mean . . . have the physician instruct the OT to record all her patient contacts from now on . . . then she will be very selective in the things she says . . . 🙂
Okay – I will ask him at next appointment!
Dear Juli,
This medical advice is a typical example of the confusion about what is said in medical jargon and what is understood by the patient. This is a perpetual problem and is the basis of so much of the tension between the medical profession and the patients and relatives. What was said to Ming depends very much on what he understood in the pre operative period and the expectations of the operation and the acceptance of his condition and the prognosis in the future. His interpretation of what was said has understandably horrified you both. What you must do now as soon as possible is to have an indepth discussion with the surgeon in charge, that is your right, and all the confusion must be removed. There are unfortunately long term effects and these must be explained and come to terms with as soon as possible otherwise Ming will have a hard road ahead. I hope this medical profession view helps.
Dan.
Thanks so much, Dan
I will try to reach the surgeon to have a chat but, so far, haven’t had any luck. It was an OT who said the glum prediction stuff and another dr told Ming not to take any notice of her so it’s a bit confusing!
Juliexxx
Never mind having a chat with her … mind you you could have a chat to clariify what she said, however I would most definately make a formal complaint in WRITING. That is beyond abrasive. It’s downright irresponsible and damaging. Get all the facts and give it your all girl!
Ingrid
Rang surgeon’s office and now waiting for him to ring me back. He was always very reassuring so hopefully he can clarify a few things!
I’m seeing red, too. Recuperation is a hard enough thing without having a medical professional diminish your tools. Hope is the most important tool we have.
As someone with experience in another area that this may involve, let me echo someone here who suggested that it may be better to lodge a complaint with the appropriate person and then request that the inept professional be taken off your son’s case. Then try to forget it. My ex husband had Aspergers, and I’ve come to understand since then that their intelligence can take them far in many fields, but their inability to understand basic emotions can bring about this kind of painful situatiion. Not every person who communicates this way does so because they refuse to learn basic communication skills. Some of them are autistic and can’t learn these skills.
Your son is so lucky to have an advocate like you. I wish you both all the best.
Thank you so much for your comment. My most recent blog post is more positive because the surgeon finally rang me – all will be well. The communication problem you describe is interesting and much food for thought – thanks again!
Hi Julie!
It’s difficult to read your post, as I know all to well just how it feels. Life is really short, and the way I see it, is that as long I follow all the rules my Doctor placed on me, I am never going to do anything. While I am still young and able, I try my hardest to push myself to do all the things I love to do, and try everything I want to try. He is obviously not going to be able to do too much, at least not for the first year, but after the first year everything gets a lot better and much easier. My heart and thoughts are with you!
I have such huge admiration for you and am so glad I found your blog. I guess the future is always unpredictable anyway (with or without surgery like this) but you are a fantastic example of the hero my Son will be over the next months of rehabilitation. Thank you!