I need sleep

[breezeesmommie]

This is for Debs2girls

Scream, yell, cry but get to the bottom of this. I have requested my daughter medically file as I am sending to another hospital per my own Doctors advise.

I also went to the patient advocate to set up a meeting with all the Doctors involved with Bree's care. My therory is if the Doctor's do not have answers what are we doing to find the answers, I have done my own research on all Bree's symptoms I throw things at them are we testing for this, is it possible its this etc etc where are they on all the test results, has this come back, I make the Doctors explain EVERYTHING to me, I want to know what they are doing where their thought process is. I am my daughter's adovcate I am her VOICE. I have her best intrests at all times where all she is to the Doctors is a patient to me she is my LIFE. I cannot live without her.

Good luck
Sue

 

[debs2girls]

Alyssa, I am not sure about any kind of "rule' and it is very frustrating...I wish he would just dx her...he said he will never be able to say for sure she doesnt have it...looks like that would be enough for the insurance...I am going to start calling them this next week and see..

Melissa, I also want to just scream and I am about to that point with the doctor...we are seeing this one because a lady I go to church with recommended him....I told her the other day that so far I am not impressed with him...she said of course he didnt tell her anything private about Cheyenne, but he did mention that Cheyenne's case is unlike any he has ever seen....well what exactly does that mean?
She is a very unique little girl and she deserves the best possible life we can give her....he doesnt want me to contact the adoption agency yet...I thought maybe if we contact them she can let the birthparents know and juat maybe they might get genetic testing done.....I know I am grabbing at straws here, but nothing is getting done to help Cheyenne unless I push it....

Sue, I am not sure what avenues there are to take.....some of you all have mentioned social workers, patient advocates and what not.....does every cf clinic offer that type of service? Should I look into taking her to yet another clinic? She is still set up with an appointment at the first cf clinic (that one said she is just a carrier) do I go ahead and take her on the 17th, and see what I can get her to do? Or do I wait til we go back to this dr on the first and just have a fit til he gives me the dx I want? Or should I say the dx I need to help my little girl?

I am at my wits end with this but I know for Cheyenne I cant give up until we have a plan of treatment....if anyone has any advice, I would love to get it....I changed my profile to show my email address, so feel free to cotact me any time....even if you just want to chat about anything....


Thank you so much ladies for your info,
Debbie

 

[breezeesmommie]

Hi Deb

Well currently Bree is at the children's hospital so I do not know if a cf clinic has a patient advocate or not. I am also in Canada. What my own Doctor has advised is that I call the society for physicans and surgeons as well we have that where I am located. It sounds as though I am in the same boat as you, Bree has 5 Doctor's scratching their heads not knowing whats wrong.

An update on Bree, Brian(husband) just called Bree's lipase is at 9080, she is on NPO again and morphine, when they gave her the morphine she ran a temp of 38.8 and developed a rash. So she is now back to the beginning, no closer to any answers.

What I would suggest is the next time you go to the clinic or call there ask the receptionist if they have a patient advocate or a social worker, you could even look in the phone book to see if they have such a department listed, I can handle anything, I am a strong person, I already had a son who died at birth from Spina Bifida. I survived that I just can't handle the not knowing anything and all the what ifs that are going through my brain.

Deb, I wish you all the luck in the world as well as all the strength. We all need it at this point.

I can be reached at susan_olson@shaw.ca

Still playing the waiting game,

Sue