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skye liela's mummy
02-26-2010, 05:58 AM
Hi all,sorry i havent been on for a while,skye been poorly so she has kept me very busy !:)
Got the results today through the post and the mri came back normal with no known cause for her bvcp.
so obviously im really pleased with that:) ,but for some reason im also feeling a little frustrated too,kinda like well why the blinkin hell has it happend !!:(
i know i shouldnt because all is ok in her brain so i feel bad for feeling like this too ! also they said not to review for another 3 months,! she hasnt had a bronch since she was diagnosed i was hoping for this to be done next week so ive got more idea what is going on inside ie theres no change,there working now or theres inprovment but not fully fuctional yet.would be nice to try and get more of a time scale on how long she has got to have the trach for,im hating not knowing.
sorry for going on a bit i just feel like screaming today x

jamie
02-26-2010, 06:21 AM
hello
yes i was wondering how skye was doing. when you get used to seeing familiar faces on here you also start to miss them when you dont see a post for awhile. skye is such a pretty baby i pray they discover the best treatment for her and that she will indeed have her trach removed someday soon.
glad the mri came back good it is wonderful that it is not due to her brain. all of my sons issues are due to brain truama so the doctors are 100% clueless as to when he will recover.

skye liela's mummy
02-26-2010, 06:55 AM
hi thank you for your support !.
you must find it very hard to have no idea as to when things will get better :hug:

mum2dylan
02-26-2010, 10:14 AM
Delighted skyes mri results are back & are normal...it is tough not having all the answers u need...hoping another scope gives u good results when done..it must be the weather & time of year as dylan was sick for a while also...

sarah78
02-26-2010, 12:27 PM
Hi Sarah,

I'd been wondering how you and Skye had been getting on. Sorry to hear she's been poorly since you last wrote. Hope she is now well and you managed to avoid hospital. I hate this time of year :mad: Nadia has also been ill off and on since end of December and me and my washing machine have been kept very busy indeed :)

Great news re mri results but can completely understand your frustration as this is the situation we found ourselves in last year. Think I told you before but we were told that if the cords were going to recover on their own then it usually happened in the first year, however if this didn't happen they would wait until the child was at least 2 until they thought about corrective surgery.
Well, this was the ENT surgeon at our old hospital who told us this info so not sure how much faith I have in it, especially given what happened with Nadia. Having been through what we have just make sure that you are happy with what they tell you and if you aren't go and ask for a second opinion. Vocal cord palsy is a really hard thing to diagnose (we've been told this by the experts at GOS) and in our case we were given an inaccurate diagnosis from the beginning.

Has Skye ever been intubated or had heart surgery?

x

lynn
02-26-2010, 01:06 PM
Great news that the MRI shows no brain abnormalities. It is hard to not know how long this life will be for. I just try to live day by day and not look into the future~but I have always just assumed we will have the trach for life; and just recently have heard some of our docs talking about the possibility of decan. Hang in there -hope the bronch shows some answers :hug:

JWorthington
02-26-2010, 01:09 PM
The results are good, but it's tough not having a reason why things are the way they are. Sorry you are having such a tough day. just take things slowly - try not to look to the future. we spent months expecting good news at every ent visit and scope, then realised it was best not to hope, that way any good news was a bonus. we got there eventually, one day at a time:hug:

Wooders80
02-26-2010, 02:26 PM
Really sorry you are having a tough time. But, I think a normal MRI is very postive news. I agree with Sarah though, BVCP is really hard to diagnose. One of Dominic's ENT surgeons decided two years post trach after an MLB that he had BVCP. He doesn't - and never has, but how it was explained to me is you have a few seconds during an MLB to assess vocal chords, as the child is coming round from anaesthetic.

I do think though one thing you have to accept, and it is really hard, is that any doctor is going to struggle to give you a timescale as to how long the trach will be in.

suzanne2545
02-26-2010, 02:51 PM
No cause was ever found for Parker's BVCP either. By the time he was 6 months old his cords were working well enough to attempt a decannulation. Unfortunately a new issue got in the way but there is hope for those vocal cords! Several kids who are Parker's age experienced function again at about that age! Keep the faith.

Baby1107
02-26-2010, 03:22 PM
((HUGS)) it is so frustrating to wait for answers, I hope you get your answers soon. We have been waiting 2 years (different issue).

skye liela's mummy
02-26-2010, 03:44 PM
thanks all, i feel so guilty for feeling frustrated still after getting great results from the mri.
why is it so hard to diagnose ? ive never heard this before.
hi sarah,no she has never been intubated or heart surgery,she very nearly was intubated once when she was resesing very badly ,but it never went ahead.
she was born term just a little small 5ib 8oz,but im only 4f 11 and none of my babies have been huge,at first they said they thought she had a narrow wind pipe that was collapsing cause she was small,and she woud grow out of it, then they put her under and had a look and thats when they said she had bvcp ?they also had a look down with camera when she was awake and the consultanys word were " no nothing at all complely paralysed "
she is makes 3 diff noises now,would this be down to the air leak she has got or could it be a sign that her cords are working ? she has a shiley 3.o neo in still. x

sarah78
02-26-2010, 04:16 PM
Hiya,

As Laura said bvcp is hard to diagnose because in order to assess movement you have to have the anaesthetic set at just the right level and they tend to have seconds/minutes to assess. In our case we were initially told that it was the vocal cords that were paralysed, however now we've been told that it is the joints at the back of the vocal cords.

As a couple of people on here have said, and I remember being told this on numerous occasions when we first joined this world, be prepared for new things cropping up along the way. Unfortunately the trachy itself can create issues so even if your ENT surgeon turned round tomorrow and predicted that Skye would have the trachy for another year, this may not end up being the case. This time last year I, like you, was desperate to know when we could get rid of the wretched tube and start living a normal life. However, more than a year on I've realised that it's best not to focus on the when...more on the how.

You will get there...as I hope we all will but it might just take some time. That said, I truly hope it doesn't and that you are back on here in 6 months time telling us it's coming out :)

On the noise front, it's probably down to the leak getting bigger as this is what we found with Nadia.

When is your next MLB?

bryantem
02-26-2010, 05:59 PM
I had a small degree of disapointment when Addisyn's MRI came back normal (but still revealed the tracheomalacia). It's not that I wanted something to be wrong with her, but I was hoping to get an answer as to why she has this problem and maybe that there was something that could be corrected.

alizesmom
02-27-2010, 08:57 AM
I'm glad the MRI was normal but get what you mean. It's frustrating when the cause remains unknown. :hug: Karen