Oh wow--what a change. I know you've been talking about her struggles and not doing well lately -but that is a big change. I'm sure it is quite hard on you to see it. I can't remember if you've said that any of her meds have changed. If so could that be it--and would it be possible to change them again-- Debra
How long has it been since Mog had those last surgeries? Could this be a time of relearning for her?
We are just starting to see Isaac emerge from 19 months of post-operative-fog. Just since Christmas he has started touching and reaching out for toys again.
And now, they say hip surgery is necessary. We say, not now, not soon, not if we can help it.
Mog had her hip op at the end of 2007. It's true that some of her problems have been with her since the op. But the top video was from last summer, some 8 months after her hip op.
She has had medication changes - we've had to take her off one medication which was acting as a stimulant, and add in two which act as sedatives. That's almost certainly a part of it. But she's also had a really rough time with her seizures including a couple of months where she was fitting all the time followed by a month where she was almost entirely unresponsive and oversedated by a different medication.
At the moment her seizures are reasonably well controlled, so I don't want to mess around with her drugs - she tends to end up in hospital when we do that.
We'll see. We have an ENT referral for next month and the thinking is that she may need to have her tonsils and adenoids out, give her a bit more extra space so she can breathe more easily. Not having to work to breathe is bound to give her more energy (I hope?), so that should help.
Then too, she's getting a new bed as soon as it has been built, one which will profile properly. At the moment she's sleeping in her special armchair. It's a lovely armchair and she is not at all sore, but I'm hoping being able to stretch out a little more in a bed might help some.
Can understand your feelings on hip surgery, Alesha; it took a LONG time for Mog to recover and she has some problems which are long term issues too. Now Little Fish is on the waiting list for the same op, and I'm not sorry that it has been delayed.
If it helps, it was in the end fairly easy to make the decision to put Mog through surgery - she suddenly started to get a lot of hip pain and extra spasm which she hadn't had before. It did help confirm that putting it back in the socket was the right thing to do.
With Little Fish her dislocation is pulling her spine out of alignment. I'm not keen on any surgery, but I'd rather she had to have hip surgery than spinal rods put in.
Tia, I'm responding to a comment you made on Mog's breathing. Does she have strider? Is it worse now than before? That is something that Carlos struggled with. Debra
Yes and yes. She has always had it on and off, and has switched it on to entertain herself in the past too. But now it seems to be here a lot of the time, and she's lost the ability to hold her head up too, so she is scrunched right over a lot of the time. She's also obstructing hugely as soon as she gets close to horizontal, which makes pad changes and showers interesting and sleeping in a bed impossible!
Have they ever done a sleep study with her? Carlos had one done and it showed that he had some sleep apenea--not enough for them to do anything about-except take out tonsils and adnoinds--which didn't help his strider and coughing. He was to have had another one at the end of June2007--but passed away before we had it. I would have had them put a trach in in a heart beat!Our daughter has had a trach ever since April 1997 and it is no biggie. Hope I'm not speaking out of turn--but because of Carlos I felt led to say something. Debra
Not speaking out of turn at all. She had two sleep studies done when she was younger, and they both showed apnoea but not serious enough to warrant treatment. So this is a problem she's always had, it has just suddenly got much worse.
I do trust our neuro; he has always given his honest opinion. Of course that doesn't mean he is always right! But now that we have a date to see the ENT people we will hang on until we get to them.
Mog does actually seem a little better these past two nights - she's still obstructing but I've been able to recline her chair a little which hasn't been possible at all lately. And we've had 9 days of school so far this year, and she's managed 7.5 of them. So that's a big improvement on last term already.
So glad you have an ENT appointment and I know I don't need to say anything about keeping on them about it-- Carlos had a bit of strider and the last year+ plus of his life it got worse. I wonder if I would have taken him to do Dr. sooner --kept on them more about it if things would have turned out different. They never did give us a reason for Carlos's death-but I wonder if he just wore out with all the rough breathing-or if he aspirated -or what. Glad that she's doing better--that has to be a bit of a relief. Debra
11 comments:
Oh wow--what a change. I know you've been talking about her struggles and not doing well lately -but that is a big change.
I'm sure it is quite hard on you to see it.
I can't remember if you've said that any of her meds have changed. If so could that be it--and would it be possible to change them again--
Debra
Oh my....Huge Huge difference but still sweet as ever! ;0)
Trina
relly dontknow wht to sayJust assurigyou of o love and prayers alway!
{{}}
xxxx
How long has it been since Mog had those last surgeries? Could this be a time of relearning for her?
We are just starting to see Isaac emerge from 19 months of post-operative-fog. Just since Christmas he has started touching and reaching out for toys again.
And now, they say hip surgery is necessary. We say, not now, not soon, not if we can help it.
I understand.
Alesha
Mog had her hip op at the end of 2007. It's true that some of her problems have been with her since the op. But the top video was from last summer, some 8 months after her hip op.
She has had medication changes - we've had to take her off one medication which was acting as a stimulant, and add in two which act as sedatives. That's almost certainly a part of it. But she's also had a really rough time with her seizures including a couple of months where she was fitting all the time followed by a month where she was almost entirely unresponsive and oversedated by a different medication.
At the moment her seizures are reasonably well controlled, so I don't want to mess around with her drugs - she tends to end up in hospital when we do that.
We'll see. We have an ENT referral for next month and the thinking is that she may need to have her tonsils and adenoids out, give her a bit more extra space so she can breathe more easily. Not having to work to breathe is bound to give her more energy (I hope?), so that should help.
Then too, she's getting a new bed as soon as it has been built, one which will profile properly. At the moment she's sleeping in her special armchair. It's a lovely armchair and she is not at all sore, but I'm hoping being able to stretch out a little more in a bed might help some.
Can understand your feelings on hip surgery, Alesha; it took a LONG time for Mog to recover and she has some problems which are long term issues too. Now Little Fish is on the waiting list for the same op, and I'm not sorry that it has been delayed.
If it helps, it was in the end fairly easy to make the decision to put Mog through surgery - she suddenly started to get a lot of hip pain and extra spasm which she hadn't had before. It did help confirm that putting it back in the socket was the right thing to do.
With Little Fish her dislocation is pulling her spine out of alignment. I'm not keen on any surgery, but I'd rather she had to have hip surgery than spinal rods put in.
Tiz
Tia,
I'm responding to a comment you made on Mog's breathing. Does she have strider? Is it worse now than before?
That is something that Carlos struggled with.
Debra
Yes and yes. She has always had it on and off, and has switched it on to entertain herself in the past too. But now it seems to be here a lot of the time, and she's lost the ability to hold her head up too, so she is scrunched right over a lot of the time. She's also obstructing hugely as soon as she gets close to horizontal, which makes pad changes and showers interesting and sleeping in a bed impossible!
Have they ever done a sleep study with her?
Carlos had one done and it showed that he had some sleep apenea--not enough for them to do anything about-except take out tonsils and adnoinds--which didn't help his strider and coughing. He was to have had another one at the end of June2007--but passed away before we had it. I would have had them put a trach in in a heart beat!Our daughter has had a trach ever since April 1997 and it is no biggie.
Hope I'm not speaking out of turn--but because of Carlos I felt led to say something.
Debra
Not speaking out of turn at all. She had two sleep studies done when she was younger, and they both showed apnoea but not serious enough to warrant treatment. So this is a problem she's always had, it has just suddenly got much worse.
I do trust our neuro; he has always given his honest opinion. Of course that doesn't mean he is always right! But now that we have a date to see the ENT people we will hang on until we get to them.
Mog does actually seem a little better these past two nights - she's still obstructing but I've been able to recline her chair a little which hasn't been possible at all lately. And we've had 9 days of school so far this year, and she's managed 7.5 of them. So that's a big improvement on last term already.
Tia
So glad you have an ENT appointment and I know I don't need to say anything about keeping on them about it--
Carlos had a bit of strider and the last year+ plus of his life it got worse. I wonder if I would have taken him to do Dr. sooner --kept on them more about it if things would have turned out different.
They never did give us a reason for Carlos's death-but I wonder if he just wore out with all the rough breathing-or if he aspirated -or what.
Glad that she's doing better--that has to be a bit of a relief.
Debra
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