How do you know if doctors are doing enough for your child if there is so much i!
Question:
How do you know if doctors are doing enough for your child if there is so much information for them to review?
My daughter's lung collapsed at birth and after three weeks was released from the NICU with no medications or machines. She was sounding very congested and her Dr. finally referred her to an ENT. That Dr. found that her adnoids were growing down into her throat which caused apnea. She is too young for surgery but her apnea monitor sounds often. A sleep study has confirmed that her saturation (blood oxygen) dropped below 70 % at times and put her on oxygen at home when she sleeps which is quite the challenge. Since then she has also been diagnosed with PDA and ASD Heart diseases; Anemia (even with iron suppliments); high platelet count; pulmonary hypertension. I'm at my witts end! I feel that I'm seeing all these different doctors and no one is putting the information together. They are all puzzled at how healthy she looks to have all of these things wrong. Is anyone in a simular situation or could shed some light on what could be going on? She is so precious. God bless!
Answers:
I'm sorry your little one is having so much trouble. All you have described is complicated and complex,and without full knowledge about her condition and the MD's findings etc,none of here can possibly give you the answer's you deserve. This is something you will have to do,and you start with a meeting and possibly a conference call with several of her MD's. Don't be shy about asking the office staff for help,that's what they are good at.information and resources.You could ask a friend or family member to help you with all this extra stress.Take care,I will keep you in my prayers, SW RNP