Monday, July 6, 2009

*i just need to vent*

I took Delilah to see her pulmonologist today and I pretty much knew what she was going to say. We got there and she said her pulse oximitry test was fine and she stayed in the 90's both nights so she is not worried about her having oxygen at night. Then she listened to her and said she sounded fine, her weight gain was fine, pretty much everything was fine. I am so sick of hearing this! Yes she likes to eat and wouldn't refuse food if she was deathly ill, so what?! Her gaining weight well doesn't have anything to do with her refluxing, aspirating or having cyaniotic apnea episodes. Lilah has been VERY and i mean VERY fussy since last week. I'm pretty sure she is cutting teeth and all she does is cry like she is in pain, even in her sleep. She arches her back way more than usual and just seems like her stomach is really hurting her. Ive been giving her all her meds like i was told but i just don't feel they are helping. She set off her alarm twice last week. Her dr told me, and i quote "I would stop using the monitor and if she stops breathing then she stops breathing." And she was being serious. She also told me she has no idea how to help her. Aren't doctors supposed to know more than you and try or at least pretend to try to figure out whats wrong? We have changed pediatricians because that dr told me the same thing. It seems like no one but me and Scott want to get to the bottom of whats going on with our daughter. The only thing the pulm recommended was a pH probe which is a probe that is inserted like a feeding tube through your nose and into your throat. Then it measures the acid level and the amount of times reflux occurs in a 24 hr period. We would be admitted to primary children's for the test. The test would pretty much just tell us 1) how far up her throat she is refluxing and 2) how often it occurs in 24 hrs (being off all meds for 72 hrs). If it is severe she will need to see a GI dr to consult for surgery. But her dr told me it was up to me if i wanted to do it. I asked her if she would and she just kept saying that she doesn't know whats wrong so she doesn't know if she would or not. If she doesn't know then who does? If she isn't sure the test is needed why would she bring it up? I'm so beyond frustrated with the doctors we have been seeing. I even filed a formal complaint with Primary Children's for the horrible care Delilah received in the PACU and ER and how both reports contain things i never said. I just don't know what to do. I want to make her better but i don't want to keep putting her through tests that the dr isn't even sure about doing. Its all so nerve racking and is really stressing us out. I just want a doctor to actually care and help us get some answers already.....

3 comments:

Meg said...

Hi, I know that you have no idea who I am, I friends with Candace Conyers (her sister April is my best friend in the whole world). Anyway, I've been following your story through your blog (through Candace's). If I may suggest a new ped for you - Anthony Pruitt. Not sure where you live, he works at Wee Care in Roy. He is totally awesome, I go to church with him. I had an abnormal screening test and he took such good care of me and my new son. Let me know if you need more contact info. Good luck with your cute little girl!

Jennifer said...

Hi, My name is Jennifer. I too have to confess I have been following your story. (Shelby Warenski is my sis in law)Through her blog. I feel so bad for you and your little girl. When I lived in SL my son's Ped was Renee Rasmus. She is amazing! I loved her. I was sad when we moved away and had to find a new Dr. She is at the Southwest Children's Clinic. Just off 90th so and Redwood Rd. If your ok with it I would like to continue to read your blog. If not I understand. I also have a blog if you would like to check it out. twolittlecubs.blogspot.com

Marisa Jean said...

Dr. Doctor...can I punch you in the face?

Sincerely,

Marisa, Jessica's friend

So sorry to hear about this. That doctor needs a good kick in the face.