How do you know if doctors are doing enough for your child if there is so much information for them to review?

Question

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!

Answer 1

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

Answer 2

My son was born with Congenital Diphramatic Hernia. He basicly was missing the entire right side of his diphram. After surgury he was put on ECMO for 10 days and resperators for another 13 days after that. I know you don't want the whole story but I wanted you to know I've been there with the drs before I offer help. It soundsas though you feel overwhelmed and helpless unfortunatly birth defects or problems usually come with other problems as well I joined Cherubs which is a support group for the CDH but you can look into groups on the internet that are really good for letting you vent when your haveing problems with her conditions. Do the drs feel like all her problems are linked? pulimonary hypertension was one of the diagnoses we got and it basicly means high pressure in the lungs but it makes it hard to get the oxygen needed that's why the low o2 sats. We had the apenia monitor when we came home from the hospital b/c the dr was afraid to send him home with nothing and it was forever going off if he rolled over or some how it got moved out of place but never b/c there was a problem. It drove us crazy but we were thankful we had it. The drs were amazed that my son looked as good as he does especally during asmatha attacks they can't understand why his o2 sats stay so high when they should be dropping. Thank God every day for every moment you have with your miricle baby and trust what their doing it may take time to connect all the dots if they're connected. It seems like they're doing all they can. My peditrician had to research CDH when my son was born bc he had never seen it just remembered hearing about it in med school. Thank God we have good drs who are willing to put in the time to studing to expand their knowledge to help your child more! lots of love and God Bless

Answer 3

demand a patient care conference with all the doctors in attendance to combine their efforts.