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Sealy
20th July 2005, 12:31 PM
Hi Gang,

The day before yesterday we spent the big bucks getting Deirdre one of the nicest
bathing suits - the plan was to take her to an amusement park with
lots and lots of water because this is the one thing she misses out
on. Everything was a go the next morning - we got up, had breakfast and
headed out for our 9:20 appointment. On the way to the subway, I ran
into a neighbour and we were happily chatting on the train - ten
minutes into the trip Deirdre starts sneezing and has all this stuff
coming out of her nose (bubbles and all ! ) I'm thinking OMG she's
coming down with an upper respiratory tract infection !!! :woe: Anesthesia
and URI don't mix. We get to the hospital and the sneezing
continues - we waited two and a half hours to see Dr. Hedden and it
was decided that it wasn't a good idea at this point in time to
change the cast, given her past history with laryngospasms. He'll
try to fit her in sometime towards the end of August when he's back
from vacation. All in all, the day was kind of a let down. She
was really disappointed she couldn't go swimming. What really upsets
me is that the sneezing has stopped completely and now I'm the one with the stuffy nose. :(




Sealy

titch
20th July 2005, 12:37 PM
Oh no! :hug: for both of you. It's definitely better safe than sorry, but such a shame that you've both had to be disappointed this way.

gerbo
20th July 2005, 12:40 PM
what a whimp, a bit off a cold and he gets cold feet. Can feel your disappointment. Did she need that anaesthetic to take the cast of?? Can it not be just cut of with a pair if scissors.

Just have o look forward to august then.

Swimmingpool time is very important, in our case it is the time we feel Laura can have her brace of without having to feel guilty, and the cuddles you can give/get are so nice.....

warm wishes

gerbo

titch
20th July 2005, 02:27 PM
Better a wimpish doctor and a healthy child ;-) I believe the laryngospasms, although manageable, have the potential to be really quite dangerous. I think the anaesthetic was in order to take a cast for the brace?

gerbo
20th July 2005, 04:29 PM
Originally posted by titch@Jul 20 2005, 12:27 PM
Better a wimpish doctor and a healthy child
I wholeheartedly agree :spin:

gerbo

Sealy
21st July 2005, 03:54 AM
Gerbo,

They were going to saw off the cast and she would be cast free for one glorious day ! The following day we were scheduled bright and early for a stand-up x-ray followed by a final cast application in the O/R with anesthesia. We weren't sure whether the sneezing was just the start of a major cold. I've requested that next time a cast change is scheduled that it be done all in one day so that if the cast comes off, we won't have to worry about contracting colds and such. She's had trouble with anesthesia in the past. Oh, and they were scheduled to take the mold for the brace on the Tuesday without the anesthesia.

I'm feeling quite unsettled at the moment, not knowing which doctor we're going to get, where we're going to go ? It's a horrible feeling - I feel very unsure of myself. Anyone else feel/felt the same way ?



Sealy

andrea
21st July 2005, 10:06 AM
How disappointing Sealy :(

Still, better to be safe than sorry - you can't take risks with something like that and I'm pleased to see your doctor didn't. The end of August is only a month away, although it probably seems much longer at the moment doesn't it?

I'm interested to hear how they mold for braces over there. Erin wasn't allowed to be awake when hers was done as they heat it up to a temperature that I was told she would find intolerable. Still, she is a bit younger than Deirdre, or maybe they do it differently.

I do know what you mean about feeling unsettled and unsure. I've felt that way with changing consultants, although I guess I don't have the same level of uncertainty that you do as I know that all consultants here will cast as their first option, so i've always felt safe that she'll remain in a cast. Erin's cast changes are all done in one day too, so I think that's a good option. I much prefer it to be done and out of the way all in one go. We pretty much get it all done in about 5 hours now, more or less as an outpatient. It's much better that way.

Here's a hug :squeeze: sounds like you need a few.
Take care
Andrea

Amazed Jean
21st July 2005, 10:30 AM
Sealy, Some days are really a pain in the neck. Sorry you had one of them. Hang in there. You such a great Mom. You're doing a great job.

gerbo
21st July 2005, 12:10 PM
Originally posted by Sealy@Jul 21 2005, 01:54 AM


I'm feeling quite unsettled at the moment, not knowing which doctor we're going to get, where we're going to go ? It's a horrible feeling - I feel very unsure of myself. Anyone else feel/felt the same way ?




Feeling unsettled is a recurring theme in our lives, insecurity does create anxiety, no way around it.

However, try to take an "objective" look at what you are up to, how and what are you doing now and what are the management plans for the immediate or longterm future. Realise that currently you are doing everything reasonably possible to ensure the best possible outcome for your daughter. See what you have achieved up till now, in the face of maybe even more insecurity and adversity. This is not goinbg to fall apart or reverse at a stroke, you will keep things going regardless of what consultant you get. Even if you are not sure about the next steps, you know you got the drive to "get the best" for deidre.

And if you struggle to feel positive; there are many "out here" happy to support.

take care

gerbo

:squeeze: (another hug, you're doing well today)

Sealy
21st July 2005, 08:03 PM
Thanks so much for the support ! :squeeze: I don't know where I would be without it. It's a really difficult time for me right now.


Sealy

newgirl
21st July 2005, 11:18 PM
Sealy,
Poor you and poor Deirdre, was she gutted at not going for her swim?
I know it is disappointing but they really can't take chances with the anasthesia. When Niamh was getting her cast there was a little girl who was getting a cast on for dislocated hips on the ward. Her family has driven over 200 miles the night before and stayed in a B&B overnight to be in time for her 8 am appointment. When the docs were checking her in they felt she was a bit wheezy and couldn't risk the anaesthetic, so they were sent home again to come back in 2 weeks :( I felt so sorry for them but at the same time, I wouldn't like a child to be out under if there was the slightest bit of doubt.

I am sorry that you feel unsettled at the moment, it can't be easy when you know that your trusted doc is leaving but just remember as far as Deirdre's care is concerned you are by far her best and most consistant advocate.
:squeeze: Nicola

Abbi
21st July 2005, 11:46 PM
awww :squeeze: Sealy, I am so sorry to hear that! I know how cancelled appointments and things can be!

I hope they can get it done in Soon!

shortgirl
22nd July 2005, 04:38 AM
aww.that had to be pretty dissapointing... but I guess better safe than sorry.

sins
22nd July 2005, 12:11 PM
As someone who's experienced the effects of a general anaesthetic on an active infection, I'm glad your doctor opted to wait.Basically respiratory hell breaks loose with huge amounts of irritation/mucus production and coughing.
In the overall scheme of things Deirdre's is a remarkable successs tory.As a parent you're almost afraid to acknowledge it and allow yourself to believe it.
At 10 degrees it's no longer officially "scoliosis".If you can hold this it's amazing.Just be patient and hopefully Deirdre will reach the point where all this treatment is ancient history, and all she'll need is periodic monitoring.
Hang on in there.
Sins

Sealy
22nd July 2005, 05:32 PM
Yeah, I just have to get a grip. Not having a doctor at this point is kind of unsettling, I guess I'm just afraid of letting everything we've worked so hard for slip away. Thanks Sinead, I need a wake up call sometimes.



Sealy

sins
22nd July 2005, 08:41 PM
I'm just so thrilled with her outcome Sealy.When I see a child doing so well, it contrasts so much with my own situation when I was a child and to see a child being spared the deformity that goes with progressive infantile scoliosis gives me so much satisfaction.When she's all grown up, you'll be able to sit back and say...........wow, I did well as a parent!!
Sins

Amazed Jean
22nd July 2005, 09:35 PM
Sealy, Sins is 100% on the spot. (As usual) What matters is that your darling will be sooo much better than most of us relics can even imagine. I think one of the reasons I love this site is that we oldies can live vicariously through the youngsters. We missed, through no fault of our own, great corrections but I am thrilled to hear all these young people having successful surgeries and going on about their lives. The wee little ones tear my heart totally out. I, for one cannot read about Deidre without tears in my eyes. I'm so happy for her. As a mother I am so proud of you and your obviously dedicated research and tenacious seeking of knowledge to help your child. You go agirl!

jfkimberly
22nd July 2005, 10:27 PM
Originally posted by sins@Jul 22 2005, 01:41 PM
I'm just so thrilled with her outcome Sealy.When I see a child doing so well, it contrasts so much with my own situation when I was a child and to see a child being spared the deformity that goes with progressive infantile scoliosis gives me so much satisfaction.When she's all grown up, you'll be able to sit back and say...........wow, I did well as a parent!!
Sins
I want to echo Sinead. Having grown up in the dark ages with congenital scoliosis, I'm remarkably mostly okay, but Deirdre is so much better off. You're doing an incredible job of being her advocate. I hope you keep in touch with us as she gets older so that one day she will have an opportunity to appreciate all that you've done for her.

As for the cancelled swimming excursion, I am so sorry for your letdown. I agree that it is better to be safe than sorry, especially when dealing with URIs, but it's frustrating that it turned out to be such a minor cold. If you weren't feeling stuffy headed now, I'd wonder if it wasn't just an allergic reaction to someone's perfume on the subway.

Sealy
24th July 2005, 01:30 AM
You're all making me cry...

gerbo
8th August 2005, 11:20 AM
so, how are things at the moment??

gerbo

Sealy
8th August 2005, 11:07 PM
Gerbo,

Since you asked :-D NOT GOOD ! Dr. Hedden is currently on vacation and won't be back until the 29 of August and he leaves for good on the evening of August 31. The secretary said she would get back to me with a decision whether Dr H could fit us in that week, she too has been on vacation and just got back today, so I thought it would be impolite to call her on her first day back at work :woe: I'll try tomorrow :glee:

There is some good news to report, we have an appointment with Dr. Rivard at the end of the month.





Sealy

Sealy
9th August 2005, 05:29 PM
Oh,

I forgot to mention, the appointment with Dr. Rivard is scheduled Aug 30, right smack in the middle of the 29 and the 31 of August. :shock: The 29 and 31 are O/R days for Dr. Hedden. Montreal is a 5 hour trip each way.... Sooooo...can you FEEL the stress ???? :bounce: :-D But otherwise, I'm hanging in....



Sealy

gerbo
9th August 2005, 05:55 PM
is dr hedden's appointment important??

gerbo

Sealy
9th August 2005, 06:27 PM
I think it's important.... he was supposed to change her cast for the last time and get a mold for the brace. He told me at our last appointment that many doctors at the hospital cast but not as often as he does. I guess it's just a comfort thing for me - Dr. Hedden knows Deirdre's back better than anyone else.


Sealy

gerbo
9th August 2005, 06:36 PM
Originally posted by Sealy@Aug 9 2005, 04:27 PM
Is no one going to comment on his handsome good looks ? :-
hint of tom cruise there, not really my type, did fancy his ex though (nicole...)

gerbo

Sealy
9th August 2005, 06:42 PM
:-)

gerbo
9th August 2005, 06:55 PM
Originally posted by Sealy@Aug 9 2005, 04:27 PM
I think it's important.... he was supposed to change her cast for the last time and get the mold for the brace

Dr. Hedden knows Deirdre's back better than anyone else.


Am i right that from nowish onwards, deidre will be treated with bracing rather then casts??

Does the doctor actually mold for the brace or will it be an orthotist who is doing this.

Have you asked dr hedden for his views on the Spinecor?

Have you asked him whether he was happy to give advice by email if the need arises in the future?

Big issue must be for you; how "straight" is Deidre's spine currently, when will you find out?

best wishes

gerbo

Sealy
9th August 2005, 07:28 PM
Originally posted by gerbo@Aug 9 2005, 10:55 AM

Am i right that from nowish onwards, deidre will be treated with bracing rather then casts??

Does the doctor actually mold for the brace or will it be an orthotist who is doing this.

Have you asked dr hedden for his views on the Spinecor?

Have you asked him whether he was happy to give advice by email if the need arises in the future?

Big issue must be for you; how "straight" is Deidre's spine currently, when will you find out?

best wishes

gerbo
Gerbo,

Yes, she'll be going into her final cast and from here on it's braces. We're starting off with a rigid brace and then we'll see... As far as I know, she isn't completely straight. The last x-ray did show an in-cast improvement over the previous x-ray (same cast). The orthotist is the one who applies the mold for the brace and depending on how it's scheduled, he's either going to be in the O/R and the mold will be applied while she's in traction or it will be done the day before.

Dr. Hedden gave me his views on the SpineCor and he basically said that there are no independent control studies on the SpineCor. I think what it boils down to is this: if her curve is stable and roughly 15 degrees, doctors will recommend watching and waiting to see what happens to the curve. I personally feel uncomfortable with this scenario and would rather treat her with "something" like the SpineCor in the hopes that the curve will completely resolve. I don't want to go through this nightmare again.... If her curve is NOT stable, then we will continue with the rigid brace.




Sealy

gerbo
9th August 2005, 07:38 PM
what does this type of scoliosis "tend" to do once cast tratment is finished. Do they tend to worsen? How do they "behave " during growth spurts? is ongoing brace treatment usually necessary?

(questions are not pure curiosity, try to understand the issues so at some stage i could try to be helpful)

gerbo

Sealy
9th August 2005, 07:47 PM
Gerbo,

I wish I knew what will happen to Deirdre - a crystal ball would come in handy just about now :-D There are so many variables and the body is such a dynamic thing.... Published studies look promising and offer much hope.


Edit: If her cuve is NOT stable but we can keep her RVAD below 10 or 5 degrees with bracing, then the prognosis is very good and we can avoid surgery :D



Sealy