diagnosis

[Gretchen(Celia's mom)]

I was just wondering if everyone has been given a diagnosis? Celia's Dr.s have always said well it could be this or that but never given a direct answer as to why she would code like she did. They acted like they didn't know why but knew the trach would fix it. Just curious. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif ( Celia has Dandy-Walker syndrome,cleft palate,trach,heart defects,kidney defects,g-tube,spina bifida) Gretchen

[Emma's Parents]

That must be so frustrating. Emma's diagnosis is clear cut, her hemangioma has distended her trachea. Surely there must BE a reason. Personally I'd keep asking until I got an answer.

Best wishes, Emma's Parents

[Gretchen(Celia's mom)]

Yes I agree about the 2nd opinion. I have asked many times very point blank "what is wrong with her airway that it collapses like it does". I am a very forward person so there's no reason for not having an answer. I just never get a straight answer. Her pulmonologist says one thing and her ENT says another and never talk to one another and then the next time they each say something else. That's why I thought I'd get a few opinions from others here. I have been thinking of taking Celia to Kansas City instead of Wichita, because I feel like I've been getting the run around lately. It's a hard call to make since she's gone to Wichita for 4 years now and Kansas City is so much further for us. But I'm just about fed up and feel like she is no longer getting the best care that is avaliable out there. Thanks for your advice and help. Gretchen

[Gretchen(Celia's mom)]

Cheryl,
Â* Â* Â* Riva and Regehr are the same Dr.s I take Celia to. They are the ones I am so very frustrated with. I swear one time Riva will be ok with Celia not wearing her passy-muir valve and the next she chews me to pieces. The last time we saw her I took the valve and told her that if she didn't believe me that Celia couldn't tolerate it and she was going to chew me out for it then she could put it on Celia and see for herself. Needless to say she put it on Celia and immediatly took it off and didn't say anything more about it. She called me the day after we had been there and told me she wanted us to see Dr. Rosenberg,a new Dr. to the clinic who is a craniofacial surgon because she was convinced that there had to be something to cure by surgery. Back to Wichita we went to see this Dr., spent an hour with him and he flatly said there was nothing he could do for her surgicaly. We have not seen Riva since. I really like Regehr but he always has said that her airway looks"good". Even when she had just coded. Then they would not do anything because everything looked"good",and then she would code again. 4 times before they trached her. Still no answers though. Also I have a heck of a time getting appt.s all in the same day because she sees 7 Dr.s there in Wichita. I try to schedule 3 a day and go down there several times a year. We live in Gorham about 3 hours from there. I made an appt. with a Dr. Bruegger in Kansas City who has been recommened to me by some professionals and nurses and families whom I won't name. I also am of the understanding that there is a Dr. Witt who is also good. Do you see either one of them? I will try this avenue and see how it goes. Would you really go that far to see this Dr. Cotton? I thought about it but have no idea how I would swing that finacially. So very sorry this is so long!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Â*Maybe I will just give you a call sometime. Talk to you soon, And thank you all for your responses!!!!!! Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â* Â*Gretchen

[p's mom]

I also wanted to respond to the financial issues to go and visit Dr. Cotton. Don't forget that there are flights out there that you can get discounted and even free for our kids when needing to travel to see doc's outside our area.

there is also the Ronald Mcdonald house in Cincinnati that you might be able to get in and it is free to stay there. (well a very small fee they ask for but if you can't pay they won't turn you away). Some of the hotels also give food passes with their rooms if you choose to pay for a hotel room.

The hospital will give free passes to the zoo which is right around the corner from the hospital and it is very beautiful zoo. If you have some time and want to get away from the hospital scene.

We went to see Dr. Cotton last May and these are some of the things we found while we were there and found they would be helpful to us if we had to travel to see Dr. C again.
Hope this could be helpful to you.

take Care.
Cory
P's MOM http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

[Gretchen(Celia's mom)]

Well i have made appt.'s for Celia with the highly recomended doc's in Kansas City. We go on May 23rd & 24th. I am looking forward to some new opinions from these docs. If this fails then I do believe we will go to the infamous Dr. Cotton. Thank you all for your responses!!!!! Gretchen

[Gretchen(Celia's mom)]

Thank you Cheryl. I will definatly check that out!!!!!! Gretchen