Brody's Perfect Heart: Playing Catch up!

Okay!! Brody's chest was closed last Thursday..

Of course anesthesia was a major set back for Brody. Paralyzed his gut... Lungs filled with fluid... Just yucky. He had his PICC ( line that goes to his heart for medication) rewired Friday... Then it leaked Saturday... Then had to go for a new PICC again Sunday. Basically because his PICC was leaking he was not getting his meds. Very important meds... Milirinone for his heart, Heprin to keep his blood thin for his mechanical valve and lasix to help keep the fluid off. Now we're playing catch up. Brody didn't do well off the medications so abruptly. His team is working to get him back to a stable place. He was put back on oxygen and Nitric... I feel like we took a huge step back, which I expected. I didn't expect all the drama with IV access which just added even more of a setback:( Here is Brody going to Interventional Radiolgy for the 3rd time to get a NEW PICC. Seth was able to carry him since he was throwing such a fit about being in the bed... Can't blame him.

Today is Monday and I'm trying to stay positive. The last 4 days have been rough, putting it lightly. I'm going to let it go and move foward. We are now on a lasix infusion which we were off of before, to help get the fluid off his body. He has been extra sensitive the last few days and is just done with people messing with him. He just cries and says NO. So hard because we have to let the doctors listen to him, touch him, feel his liver, etc. his nurses are busy with keeping his infusions going listening to his lungs and keeping up with the constant Dr's orders that roll in. They are amazing, not only do they take care of Brody but a select few have touched my heart as they try and take care of us as well. Keeping Brody calm is almost impossible unless we give him meds, which unfortunately that is what it has resulted to:( Leaving the room for a bathroom break doesn't happen, he is never without Seth or myself! We are the only thing that gives him comfort, and we will be by his side always! Hoping this week is a turnaround .