A Really Bad Day

Yesterday was a really bad day, perhaps the worst day yet in Emily's battle. She was settling in at PCH for a night of heart monitoring. Her hart had been doing some strange things but the cardiologists were unable to detect what was happening. They decided they needed 24 hours of heart data to see what was happening. After being in the hospital for only a couple of hours word came from UCLA concerning her last heart biopsy (on Oct 5). They confirmed that she was in rejection and needed immediate treatment.

She began a series of medications that was intended to kill off her T-cells so that she could have a plasmapheresis procedure to change out her blood plasma. This sounds as tough as it is. After about an hour and a half on the medication she began to vomit and was feeling very bad. At about 2am Thursday, after her mom helped her to the bathroom, she collapsed.

This began about 45 min of CPR and other activities to get her heart started and to get her to breath on her own. I received a frantic call at about 2:15am telling me to get to the hospital. Kathy was all alone and watching a horrific scene. I called my mom to come over to stay with the girls. i got to the hospital just before 3am and they were still working hard to save her life. It was worse than any nightmare I have ever had.

It took a long time to get her inti bated and get her heart beating on it own. It also took huge amounts of very powerful medication and her heart was not working very good (in fact it was barely working at all). It was soon evident that in her condition they were going to need to get her on some type of support to give her heart a break. They first tried to insert an arterial pump but this really did nothing to help her. By 9am or so they were hard a work trying to get her on the ECMO system. It took several hours of work to get her stable on the system.

The staff at PCH worked very closely with Emily's transplant team at UCLA and the heart transplant team from the Mayo Clinic in Scottsdale. It was decided that Emily had the best chance at survival by being transfered to Mayo and placed in the care of their team. These people have the expert knowledge of rejection that Emily needs.

She was transported to the Mayo Clinic by 1:30pm and the team went to work. They quickly got her stabilized in her room and began preparation for a biopsy and to put a catheter in her heart to releave pressure from the ECMO machine. This will prevent fluid (blood) from being forced back into her lungs. These procedures were completed, and went smoothly, by about 7pm. It was then back to the room to begin a run of the plasmapheresis.

By the time I headed back home at about 10:30pm things had quieted down. Kathy stayed at the hospital but nothing new happened (for a change).

More later...