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Gadget
12th December 2005, 10:31 PM
I've had to ring them again as we still have not recieved any letters from them. After being passed from pillar to post again. The appointments folk said they had her down for something but i'd have to check with the ward hang on i'll put you through. To the pediatric clinic who were very puzzeled and put me through to the ward who were in the middle of their Xmas party! Sorry said the ward we don't have that list we will put you through to Mr Marks Secretary. Who was very confused who did i make the appointment with she said? You i said, Oh she said. Tap tapo tap. Oh yes we have her haven't you had a letter? No thats why i'm ringing! So i'm taking her in for 7.30am tomorrow. Hardly feels real and i'm a bit nervous. Dreading getting up that early in the morning lol we have to leave at 6.00 am.
Gxx
P.S
Sorry i've not been around much I've not been able to face the pc just lately.
Just to let you know my news, I'm expecting a baby in June :-)

Thaleias spirit
12th December 2005, 10:35 PM
Good luck with the appointment tomorrtow gadget.
hopefully i will all go okay for you.

andrea
12th December 2005, 10:37 PM
Hi Gadget

Nice to know things are going well with you and the pregnancy. I'm sorry you've had to chase the hospital to confirm your appt - a situation that is all too common unfortunately.

I'm used to thesse early starts - whenever we go in we have to be there at 7am. I find it easier to leave them sleeping until the last possible moment, when I get her dressed while she's still semi-asleep. She understands now that on hospital days she can't eat or drink, but in the early days it was difficult when she was thirsty. Unfortunately it's just something you have to go with and resist the temptation to give her a drink.

I hope it all goes well, I'm sure it will. Fingers crossed for some good news. Hopefully you'll be able to find out the extent of her curves and how the casting will help.

Let us know how it goes.
Andrea
x

mark
12th December 2005, 10:58 PM
Congratulations on being pregnant. Its great news that you have an appointment tomorrow i hope all goes well

Abbi
13th December 2005, 01:02 AM
Great news Gadget! I am glad the appt is going ahead tomorrow! I hope it goes well for you, and you get good news! :D

Sealy
13th December 2005, 01:31 AM
Good luck tomorrow Gadget ! :niceone: All us girls know about your pregnancy from the "pink room" of course :monkey: :D

sins
13th December 2005, 10:17 AM
Good luck Gadget.It infuriates me that you have to chase your appointments like that.Less determined parents often find themselves just giving up and accepting " the system".
Try and ask as many questions as you can, degree of curvature etc..
Hope all goes well.
Sins

zerodegrees
13th December 2005, 11:39 AM
Good luck gadget. Hope it all goes well for you.

john

Gadget
13th December 2005, 08:09 PM
:nut: :nut: :nut: ARGH!!!!!!!!!!!!
We were half an hour late because my Father in law ignored all of our directions and went his way turning a 45 min (that includes traffic) journey into an hour and 45 min journey. Good job really though as the ward was still asleep and nothing was done till gone 8 anyway. Then we were told that she wasn't getting a general after all so it was lovely and stressful for me and Sammi, Ade who held her bum down took it all in his stride but it was too much for me and i was glad i'd opted not to hold her as i was in tears come the end.
U-turn 2, She isn't casted! They are going to brace her. This was news to us. So the casting was for a mould for her brace and we have to go back twice now for the rough fitting and final fitting. This won't be untill well after Xmas now. Only good thing is that she will have her MRI scan before it is fitted as the appointment for that has come through and is on the 28th Dec.
They didn't even tell our named nurse that she wasn't having a general, we had to do it.
I dispare with the place i really do. We have been told that they will send for us when the brace is ready, i'm only giving them untill the middle of January then i'm going to start ringing again as we still haven't got the letter for her appointment today and i doubt we will ever see it.
Argh!! Oh well thank gods it all over for now i'm completely shattered so is Sammi, she's been asleep almost 3 hours now, bless.
Sorry about what seems like yet another rant, on the upside the nurses and staff who cast her were wonderful and really tried hard with her.
G xx

gerbo
13th December 2005, 09:41 PM
I wish I could tell you not to worry, but I cannot. I often have felt despair at what i perceived as a disinterested attitude from consultants We never had the impression that they have been doing their best to achieve the best possible outcome for our daughter, and all what we are doing now is not because of any input or encouragement from our consultant team but because we have been looking and asking around, reading and considering etc, etc, This is the best I can advice, do the same, make sure you are not taken for a ride, make sure that you know what is the best possible route to follow. I don't think you can afford to loose a lot of time.

Gerbo

(I hope some of our members with experience in the subject can reassure you better then I can)

Thaleias spirit
13th December 2005, 10:18 PM
I've never had that frustration with appointments (well aside from not havong appintments to start with til I questioned everything. But I can just imagine your frustration and anger.

Have you any idea as to why they changed their mind about a) giving Sammi a local and stressing her so much? and whey theve changed their minds about casting and now bracing ? Or are they not sharing info with you at all?

Can I recommend you get a notebook now.
make a note of appointments dates and everytime youve rang for info.
That way if you continue to be shut out you have a note of it all.
every step of the way.

Have you anyone who could help you get copies of records? So that you know exactly what they are doing? I recommend you do. Don't give up pushing them for it all, I know its exhausting but we will give you all the advice we can.

:squeeze:

chele

Sealy
13th December 2005, 11:40 PM
Gadget,

It sounds as though there was a serious mixup ! Are you happy with the prospects of getting a brace ? What degree curve does Sammi have again ? I guess you wouldn't have the RVAD number would you ? It's really hard to give advice without those numbers. Maybe you could post a picture of her x-ray so that we could take a look at it ? I don't know what to say.....if her curve is progressive then you would definitely want serial casting. Is there a hospital nearby that does serial casting ? Sorry for all the "?" You probably have so much going on with the pregnancy and all :woe: Keep your chin up, things will work out :niceone:

Abbi
14th December 2005, 12:03 AM
Gadget, I am sorry that the appt didn't turn out as well as expected! I am glad that it went "OK"
I guess the good part of not having a general was that she wouldn't be all groggy and feel sick after!

I am surprised that they are taking the bracing approach to her....for treatment! she is only 2 right?

Sorry to ask (I do sound awfully ignorant here) but which hospital is sammi being treated at!

I hope the MRI scan goes well on the 28th

*hugs*

Abbi x

sins
14th December 2005, 12:43 AM
Ok, Phone the hospital! DEMAND to see the consultant immediately.Go in flaming if you must.This is UNACCEPTABLE!
So far they have given you no meaningful information, no diagnosis, no inclusive discussion of the treatment "plan" for Sammi.
I have no idea why they would choose a brace over serial casting.This is something you need to ask.Unfortunately without the actual measurements of the curve, there is little advice that we can give you.Do you even have a picture of Sammi's back or a description you can give us?
Sins

BeckyH
14th December 2005, 02:06 PM
i'd go even further than sins and say change hospital. this is unbelievable. do you know if your hospital frequently deal with very young children with serious scoliosis? have you ever seen other kids sammi's age in the waiting area, for instance? it's totally unacceptable and i'd be running a mile

gerbo
15th December 2005, 10:02 AM
Another thought (if you want another one, as if things aren't confusing enough yet) is whether the consultant meaned her to have a brace, or whether there has been a miscommunication between consultant and orthotic department. Can you remember whether the consultant actually talked about serial casting when you saw him? I am sure that I saw a leaflet there talking about it, so they must be doing it.

Some figures/facts about the curve would help to get better advice. Bynow your GP should have had a letter following the first appointment, all that info should be in there. Phone and ask for a copy. Also, if anything needs clarifying at the department, and you do not feel up to it, ask your GP to write.

I can just imagine that you feel a bit bewildered at the moment, the only way around that is to get absolute clarity about the situation of your child, options for treatment, prospects and proposed approach by the hospital.

All best wishes

gerbo

Gadget
15th December 2005, 11:07 AM
Thanks for your help and support guys. It is much appreciated. I'm afraid i have no information for you about either Sammi's curve or a copy of her xray. I asked for the information when Sammi had her first appointment in the 'cupboard' and was fobbed off by the consultant with it's half way between not too bad and terrible. What the heck is that supposed to mean. I'm determined to get straight answers from the staff at Birmingham Childrens hospital when we go for the MRI. I'm also thinking of asking if maybe we would be better off there as they are dedicatd to children. We are currently at The Royal Orthopeadic Hospital in Birmingham. The best i can do is get Ade to take a photo of her back and put it up for you.
I'm going to ring and get an appointment with my G.P (need to give him the letter from them anyway about what she had done) maybe he can tell me what i need to know. All the consultant said was that they would make an appointment for casting for her and i assumed that he meant serial casting as he didn't mention any braces. I did think that Sammi was a bit young as yes she is only 2 and a half.
I did query the casting for a mould with one of the nurses who said that she was definately down for it and not to be put in a cast. Hopefully there has been no huge mix up else heads are going to roll!
I can't say whether or not they regularly treat kids of Sammi's age there as we have never been in the waiting room long ebnough to see anyone else, we got shuffled rapidly into the cupboard. Gerbo can probably answer that one better as he has been there longer.
I was bought up to trust dr's and accept whatever they said as the knew better than us. I can see for definate that this is not always the case so especially from now on i'm going to make sure that either myself or Ade gets a decent answer from them. At least in the letter about Sammi's MRI appointment they explain exactly what they are going to do and why before hand, maybe the letter from the Royal Orthopeadic would have to some extent too if i had ever recieved it.
Thanks again for all your support.
G xx

BeckyH
15th December 2005, 11:52 AM
sounds like you have a bit more of a plan going. i think it's horrendous what the consultant said when you first met him (and i remember you telling us about it then)

get sammi to do the bend over test for a photo, if you can, and take a picture of her from behind just standing up too

gerbo
15th December 2005, 12:39 PM
I'm afraid i have no information for you about either Sammi's curve or a copy of her xray

as i said, get this info from your gp, or ask your gp to get this info. Copy xray; try phoning the xray department and ask whether you can have a copy, they were helpful to me when i asked them. (although consultant had to approve)

I'm determined to get straight answers from the staff at Birmingham Childrens hospital when we go for the MRI. I'm also thinking of asking if maybe we would be better off there as they are dedicatd to children.

unlikely to get them, they are only taking the mri, no doctors involved Also, they do not have a paed orthopadic department of their own, although mr marks (from ROH) is on their list of consultants. I think all birminghams orthopaedic work of any relevance goes to ROH. Still, you can ask.

I can't say whether or not they regularly treat kids of Sammi's age there Gerbo can probably answer that one better as he has been there longer.

have seen other small children (it is the midlands regional centre after all)


I was bought up to trust dr's and accept whatever they said as the knew better than us. I can see for definate that this is not always the case

sigh.....................................(very long one) if only they would communicate a bit better, so much easier to trust if you know why they are doing what they are doing................

gerbo

BeckyH
15th December 2005, 01:24 PM
gerbo i'm not sure if gadget's GP will have info on degrees of curvature, as it seems from the appointment that the consultant didn't even take measurements (unless he did it after gadget and sammi had gone)

gerbo
15th December 2005, 03:10 PM
would be very unlikely that no measurements would have been taken. In any case, GP might be in best position to find out either way

Abbi
15th December 2005, 06:11 PM
I can't believe the way you are being treated gadget! Its terrible! I thought I had it bad, cos I had to wait, and had cancelled appointments!
I find it worse that they actually did'nt explain a lot to you about sammi's condition! (I was given a brief explainnation and was shown x-rays!)

I am with becky - change hospitals - it is totally ridiclous what you have had to deal with! grr!

Gadget
23rd December 2005, 12:00 PM
I've lost my baby. Hard to cope with everything right now and i'm not doing very well. Was in hospital MOnday and i had no luck either. It's taken a week before i could get on and don't know when i'll feel up to it again but i'll let you know how it all went with Sammi.
Have a nice Christmas.
G xx

sins
23rd December 2005, 12:06 PM
I am so, so sorry to hear this.I can understand how you're feeling right now.I know though you'll find the strength for Sammi, please let us know how she's doing.Remember, we're here for you through it all and if you just feel like dropping by and getting this out of your system, we'll always be here to support, understand and listen.You're not alone!
Try to find some time just for yourself and be good to yourself.
Thanks for letting us know. Lots of hugs and warm wishes to you and your family.
Sins

tonibunny
23rd December 2005, 12:19 PM
Oh my goodness, I am so very sorry to hear this. You're in my thoughts. Take care,

Toni xx

Sealy
23rd December 2005, 03:34 PM
Gadget,

So sorry about the latest news :woe: Hopefully with friends and family surrounding you during this festive season, it'll be easier to cope. :squeeze:

andrea
25th December 2005, 06:21 PM
I'm so sorry Gadget. I've been away so haven't been able to get onto a computer. I think we all understand what it feels like to not be doing very well, so my thoughts are with you and your family. I hope that things go well with Sammi - please do let us know how things go and if we can be of any help.

Big hugs. Take care of yourself. :squeeze:

Abbi
26th December 2005, 12:00 AM
Gadget....I am so sorry to hear that you have lost your baby! I can't imagine what you are going through right now, or how you are feeling!
:squeeze:

Thinking of you at this time.....

Abbi xx

newgirl
28th December 2005, 09:54 PM
Gadget,
I am really sorry to hear about your baby, I have been away for a few days and only seen this post now. I hope that you are feeling a bit better physically, and that Christmas was not too hard for you and your family.
:squeeze:
Take care and keep us updated on how things go with Sammi,
Nicola

mark
29th December 2005, 02:00 PM
I'm so sorry to hear you lost your baby Gadget. As a parent i can not begin to imagine what yuor going through

:squeeze:

Take care

mark