I know many of you reading this have spent a ton of time in hospitals and doctors offices and are likely more knowledgeable of medicine than you would like to be! My child was born with Down Syndrome 7 weeks ago. He is still in the ICU for tachypnea (fast breathing). He breathes about 90 times a minute vs 30-40 like he should. He has fluid in his lungs and when they give him diruetics, this clears up the fluid and reduces his respiratory rate to about 75.... better, but still not normal. They can't figure out what is causing him to breathe so fast and of course this makes him 1-not want to eat, 2-tired all the time and 3-not grow because he is burning calories so quickly.
He had some minor cardiac issues (ASD and PVD) which have resolved. They have tried a few asthma medications (bronchodilators), reflux meds and thickened liquids (swallow study showed silent aspiration) however nothing seems to help. He had an upper GI to rule out a tracheoesophageal fistula.
Have any of you had a similiar issue? What ended up resolving it? Can you think of a diagnosis that your child has or you have heard of with similiar symptoms? Thanks for any suggestions!