All was well until Friday evening. Harper’s heart rate would suddenly drop to the 60s-70s when it should be in the 120s. Her saturation levels would drop to the 50s-60s when it should be in the 80s. Her respirations would drop to the 10s when it should be in the 30s. She did this 4 times in about an hour and a half. After the last time her nurse and I were sitting Harper up, patting her back, stimulating her but Harper didn’t respond as she should. Her heart rate stayed in the low 100s. Something was wrong. All I could do was stand back and watch as a flood of nurses and doctors rushed into the room.
“Call the ICU team.”
In an instant, the ICU team appeared to evaluate her and remain on stand-by in case we needed to transport Harper back down to the CVICU. Harper was stabilized and the staff felt comfortable enough to keep Harper on C8 and not send her down to the ICU. She remained on the IV until Saturday mid-morning when the doctors wanted her to try to feed again. She needs nutrition not IV fluids, but Harper had another episode only 7 mL into her feed. Here we are now, all the way back to continuous feeds at a slow drip. She has thrown up since being back on continuous feeds but she has seemed to tolerate them well enough. We don’t have answers as to why this is happening. She was doing great and as you know we were close to coming home. So close.
Tomorrow, Harper will go under sedation for two procedures. A bronchoscopy and a liver biopsy. They have decided to do the bronchoscopy to once and for all rule out a TE Fistula, a connection between her trachea and esophagus, and evaluate her airway. The liver biopsy is the next step to understand a reason for her jaundice. Her liver function is technically good but there is some reason for the jaundice. It may be a genetic disorder or it may resolve on its own, it may be a bad deal, it may just be her body prioritizing her systems and her heart needs more attention so its going to semi shut down the ability to move bile. Whatever it is, hopefully, the biopsy will give us a closer look.
Along with all of that, we are closely watching Harper’s heart, specifically, the Atrial Septum and the hole that was enlarged by Dr. Dimas in the Catheterization Lab on April 10th. The hole shows some restriction.