I can't believe that after one appointment with the surgeon where they throw all sorts of bad news and statistics at you, you don't get another opportunity to ask any questions until the day of the surgery! I have a couple of questions that I really want answered in advance of the day (like whether they use CT scans for example, how many of these procedures the Dr has performed, whether her osteotomy if required will need pins and plates or will just be a shortening etc) and the receptionist keeps telling me that even if she leaves questions for the Dr, most likely they won't get answered. The only option she has given me is to book another whole appointment next week, just to ask a couple of questions that could be handled in 5 minutes on the phone.
Did anyone else have this problem? I am so uncomfortable handing my baby over for surgery without feeling like I am fully informed, but maybe it would be the same no matter which surgeon we see. Is this standard or have others had a different experience to this? Have you been able to speak to your surgeon by phone for any quick follow up questions?
I am just so frustrated and now feeling quite uncertain about our choice of surgeon. Perhaps though this would be the same no matter who we see. I just want to make the right decisions for my baby girl.
Sorry for the rant but I felt like I was going to explode if I didn't get it all out.
Oh, I forgot to ask whether any of your brave bubs have had to have CT scans? Statistically there is a 1 in 500 chance of a 1 year old developing cancer at a later stage from exposure during a CT scan, and that statistic is scaring the pants off me. I really want my daughter to avoid a CT scan if at all possible but I can't even get an answer from the doctor as to whether she will need one. I might be worrying for no reason. Aaaarrgghhh!!
Karma - we had a wonderful receptionist named Sharon at Mark O'Sullivan's and she would answer anything and even put you in touch with other parents who Mark had treated. Unfortunately, Sharon left but I'm sure he would've made sure that there is someone else there to throw questions at.
DD had an MRI one week after the op, it was apparently the best way to see if everything had worked, and then so many x-rays after that, that I've lost count. I know what you mean about the cancer fear, but I just had to grin and bear it and hope that through this she has earned brownie points in the health department. The MRI didn't take very long at all, if that is some consulation to you. At RCH, they gave DD a sedative which helps them go off to sleep because they need to keep still.
Maybe make that extra appointment just to get some answers and have that piece of mind that you know exactly what is going on. Write everything down before you go, if you do.
Thanks Corelly. You are such a wealth of information and I really appreciate it :-)
I actually rang after my last post and spoke to I think Lisa at Mark O'Sullivan's office. She was so, so lovely. Unfortunately though we can't get an appointment next week before our surgery date and then the surgeon is on holidays. Even if we could get an appointment, Lisa indicated that we wouldn't be able to get a surgery slot until late September which is too far away given that our little girl is turning one already.
If it is an MRI or X-Rays I will be okay with that as I know that there aren't too many options in a case like this. It's more the CT that I am concerned about. I would feel so much better if I could just get an answer to that question from our surgeon. It looks like we will have to book an actual appointment next week with our surgeon just to get a few answers. At least then I might feel a little bit more informed.
Thanks again for the great info and advice that you have provided. :-)
I'll keep my fingers crossed for you Karma that it is an MRI you get sent for. I'm surprised that the receptionist doesn't know what your surgeon prefers to do after surgery. Feel free to PM me at any time too, I can give you my details if you PM me.
Emma is doing really well, we got home yesterday afternoon. It is so good to be out of the hospital!
We went to Monash Children’s Hospital in Clayton and our Dr was Ton Tran (head of paediatric orthopaedic surgery). Our experience was a positive one, the Dr’s and nursing staff were fantastic.
Emma had an open reduction as expected. Her spica cast is plain plaster which we will write all over and keep once she’s out of it. She was first on the list, so we didn’t have to wait long until she was called for her op. She handled the 6 hrs fasting without any grizzling, such a good girl!
The anaesthetist used gas to put her to sleep (my husband held her in his arms whilst this was being done) and then used a block which made her numb from the waist down (helps with post op discomfort apparently).
The op went for 1 ½ hours. During this time my husband and I got a drink from the cafeteria, bought Emma a big balloon and then got our pram and car seat and took them to the ward so the OT’s could modified them if needed. The time went really quickly (thankfully) and before we knew it we were being called to see Emma.
She recovered really well from the anaesthetic, she was a little pale and swollen but otherwise good. She had a bottle as soon as she was awake.
The following day Emma had a MRI to confirm that the hip is in correct position, she screamed in the beginning as the loud banging noise frightened her, but actually fell asleep 5 mins before the end! I was in the room with her. We were discharged after this. Car seat was modified (like Corelly, we had to buy an extension strap $20), pram was ok as is.
Since being home Emma is much more settled, she slept solidly last night despite having nappy changed 3 hourly. Tonight we’ve decided 4hrly should be ok.
Karma1410, I hope our story helps you to prepare for August 11th. I’ll be more than happy to tell you anything else you want to know. The cast is heavier than I expected and was quite awkward to begin with, do you know if your daughter is getting fibreglass or plaster cast? Hope her 1st birthday is a blast. What is a cake smash by the way?! In regards to your post about wanting more questions answered by the surgeon, I would book another appt if it would put your mind at ease.
Corelly, I was told that the cast will only need to be on for 6 weeks not 12, yay! Emma will then most likely go into a Rhino Cruiser
So glad to hear everything went well furgurnie! Sounds like you have an amazing little girl. I hope the next 6 weeks go quickly and she (and you!) is coping ok. Was your hospital stay only overnight? We were told 3 nights - perhaps that could be because my DD is older?
We are going through Childrens Hospital at Randwick and our surgeon is Dr Angus Gray, we were referred to him by our Dr who has worked with my mum for around 20 years!
Im back at uni this week and im over it already!!! Hope you all have a great weekend
Wow you guys have been busy chatting! Feel like i cant keep up with you all!
Good Luck to Furgurnie, Sounds like you have already left for the operation, sorry i didn't get back to you with an answer to your question earlier.
"Madcat, how long after your daughter's first op did you find out that she needed another? Was she in a lot of pain post op? How long did she stay in hospital for?"
Kira was 9mths when first diagnosed, she had closed reduction and tendonectomy, surgeon said one year later that she may need further ops before she goes to school. It was always in the back of my head at every apptment, fast forward to now, she is 5 and has just had a salter osteotomy. Still not sure if she will need further procedures. When they are small it is hard to project how their hips will look, even one year on, so as parents of kids with DHD we all need to be mentally prepared for the possibility of our lovely ones having surgery. Its a long process, but it is worth every minute to see them being the best they can be. oops go carried away... Um yes she was in quite alot of post op pain, took awhile to work out how much Morphine to give her to keep pain at bay (I nearly took out a couple of nurses in the battle, and i am normally very calm!!) But they did redo the op four days later because bone graft moved out of position, i dont think this helped on the pain scale. we were in hospital a total of eight days.
The best part is: Someone asked Kira if she liked being in hospital, to my shock, she said it was great! She must have blocked out all the yucky bits and only remembers being able to eat as much ice cream and jelly as she wanted!
So as traumatic as it is for us, our little ones seem to have some AWESOME inbuilt coping strategies!!!!!!
Time for a rant
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