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!
We are praying for Bella and for each of you. I can't imagine how hard it must be to be back at the hospital AGAIN!
Love you guys to death! let us know if there is anything we can do to help John has a three day weekend so we are available! Much prayers sent your way so you can come home soon!
So sorry Shell, I hope that they are able to come up with a good plan that will allow her to go home again. Who has the girls this time?
I am so bummed that you have to be back in the hospital, but I realize that you have to do what is best for her! This is a puzzle, and you are solving it one piece at a time! On the positive side, Bella's last stay at the hospital was spent with weeks of waiting for surgery! Hopefully this means that they can figure out the right set of meds, and get you guys back home asap! This is all just one small grain of sand in the sea of time! This too shall pass! Please remember that I am here and happy to help... I know that things like this make us all feel like we are putting our burdens on others, but the truth is that it blesses so many lives. It has certainly blessed my family in every way as we have pushed aside the unimportant, and focused on everything that brings lasting happiness. I am grateful that you have let me help already, and would feel blessed if I get to help in any other way! Love you guys and praying for you!
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