We are back in the PICU. Her respiratory rate and need for oxygen increased overnight. So I called her doctor knowing what she would say. We went to the ER who immediately had us in triage and then in a room. We were admitted to the PICU.
I will share some more about our triage. I did the triage. The nurse typed. I told her the diagnoses, her meds, the dosages and frequencies, and then what I wanted. They moved us to the ER and I repeated all of that for what I thought was another nurse, nope, it was the doctor. But he concurred with everything I said. I guess it’s pretty standard protocol at this point. I wonder what normal is sometimes. When her respiration rate is in the 70s and her O2 is dipping into the upper 80s, and her heart rate is over 140, I’m OK. She’s OK. Then I see the faces of the nurses as they see her stats for the first time. Hmm…. I wonder what normal looks like because this is normal for us.
We are on increased oxygen and nitric oxide. They have doubled her sildenafil. I have talked with pulmonologists! I am so excited to see them. It’s like we are solving the second half of the puzzle now. Her heart has been repaired and now we work on the lungs.
I am hopeful that we can figure out a good treatment plan. Hopefully one that keeps us out of the hospital for good!
Our current diagnosis besides trisomy 21, repaired AV canal, and pulmonary hypertension is hypertensive crisis. She had fluid around her lungs again (Tuesday they were better – amazing what 2 days can do!). So IV lasix and sadly, no feedings. She is mad as a hornet that she can’t eat – granted she rarely eats orally these days, but her tummy is empty and she is letting us all know it! It took them 2 hours to get a good IV and get the necessary blood for the labs – poor baby girl!