Kaylies update granuloma mess

[Kaylie]

Hi,
Any of you following kaylies granuloma crisis..here is a update. We spoke and have been speaking with so many Dr. and nurses its just crazy, and each of them told us if we want something done sooner or to get someone to listen we need to take her to the ER....of course we as trach care families here no how much we love the er especially when our child is not SICK........So on Sunday thanksgiving weekend we spent 8 hours on the highway to take her to the er.. everyone telling us she would either get admitted or she would get a sooner appointment with the ent than she has.....now all along the Dr. who found the granulomas is being a real face..... he doesnt want to take responsibility when he is the one who is responsible........He has off ...... for so long putting our childs life at risk......We were seen in the er and nothing was accomplished other than a sooner appointment which was great ...but wait the story even gets better on monday the office calls and tells us they will see us wednesday at 8 am , then yesterday they call and say that the er Dr and the resident did not have the athourization to give us a appointment and that we cant come... what the h ll is that sh t They say the DR who did the last bronch is responsible for his own mess in other words and he needs to clean it up,well not in those words but basically thats what they said......so once again nothing is being done .I am beyond words to describe what the hell all of these Drs are thinking . i think i am ready to give some Trach to some of these idiots , we have been advocating and calling and reaching out to everyone we know within the medical profession and cant get any help.........i am about to loose my mind .So we did what everyone told us to do and nothing was resolved and it just makes me sick to my stomach.....Here is a interesting thing the Er Dr said when we asked about any ideas or suggestions as to what can we do other than what we already know if the trach comes out, and his words were DONT LET IT.......well Kaylie is a 2 and half year old cmon now lets get real........just when you think you got what you need then within minutes the table turns and then you have crap nothing............what the hell is going on with the medical community these days........

[twintotwin]

Kathy- I understand the docs not wanting to become involved with another docs "mess". Usually they want the same doc to treat whatever it is. When too many docs are involved it becomes a liability.
Now, I guess the case would be different if you were to SWITCH docs. I asked you before, are there any other pedi ENTs in your area?
I would call them and just say you are looking for a 2nd opinion. Act ignorant. Say the last trach change you had much difficulty inserting the trach, and your current ENT doesn't know why.

I don't know.
Maybe someone else can think of something.

[Ann]

I'm sorry you are having such a difficult time. Â*I know that our sense of urgency when it comes to issues involving our children is much different than the "professionals". They prefer the reactive approach, while we prefer the proactive approach. Â*It's a very tough situation you are in right now, just take a deep breath, give yourself a hug for working so hard to do what is right for Kaylie and know that you are doing all you can right now and things must and will work out.

Hang in there.

[JWorthington]

Oh Kathy, I understand your frustration. We have been desperately chasing round to get Sam's scope rescheduled. Its been 2 years and no one has examined his airway, I know the trach is to stay put for a while yet, but that doesn't mean that they shouldn't check that the trach is not causing more damage than it was put there to solve! The ENT suspects Sam may have granulation, or supra-stomal stenosis (haven't quite worked out exactly what that is, but it doesn't sound nice), because he has had the same size trach for 2 years and is still unable to make any sounds whatsover, and as he has grown considerably, air should be leaking round the trach.

Sorry, I'll stop rambling on your post. Hope you get someone to look at Kaylie soon, you are a great advocate for your granddaughter. Keep us posted how things go. We are in this together, sister

Julie
xxx

[Alethia]

{{{Kathy}}} It all sounds so horribly frustrating. YOu must feel like you're banging your head on a pebble-dashed brick wall! What an absolute blinking nightmare! I wish I had some sensible suggestions, but it sounds like you've been through all of them. Maybe changing docs is your only option now. Hope you get some satisifaction soon.

Lots of love,

Kate
XXXX

[Kaylie]

thanks guys for all your support thru this.. As for switching Dr thats what we have been trying to do.....but again no one wants the responsibility..We did what all the medical pro said and thats obvious we havent gotten far...so that makes it more difficult...Well yesterday we went to the ENT assuming he would change the trach,thats what the appointment was for but that didnt happen....there was alot said at this appointment and he put me in a terrible spot forsure i had like seconds to respond to having the trach changed. He definetly didnt want to do it and forsure didnt want to be held liable if something happened, one of the things he said was if it was my child i would not change the trach at this time.....i am not sure if it was because of the problem we had here at home, if it was because of the granulomas......if it was just because......We always have changed the trach weekly and now that didnt happen.of course we are concerned and forsure dont want to leave the same trach in indefinetly........THe ent never contacted the other ENT to even try to get a sooner appointment for kaylie...its just a big mess and i cant believe this is happening, but again i know that it is..........