Post Surgery #1

After Destiny came out of the OR late on the night of November 9, 2010 her poor little heart had been through so much that they needed to have her on a heart bypass machine called ECMO (http://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation).  Along with her heart not being strong enough to pump, her lungs were also functioning at a less than optimal rate, so although she was ventilated, she was not able to oxygenate her blood on her own. The basic function of ECMO is to help pump blood through the body as well as add the extra oxygen that her body was not able to provide.

While dealing with Destiny being ventilated, and on ECMO we were also trying to manage our own roller coasting emotions, a home, and a toddler. We also had one VERY big worry on our minds, where were we going to stay during all of this?? Thankfully the day after surgery we got a room at The Ronald McDonald House and that took a huge weight off our shoulders. Though it's not the same as being at home, it's somewhere comfortable that we're able to rest and get out of the hospital environment.

We have also been very blessed that my mom and her fiance have been able to take care of Brooklynn for us while we're trying to deal with everything that's going on, and at 10 days after Destiny's surgery we were VERY thankful that we didn't have to deal with Brooklynn all on our own.

We had gone home for a few days to spend time with Brooklynn and take care of things around the house (pay bills, buy groceries etc) when on Thursday November 18, (9 days post surgery) we received a call from the hospital asking that we come up to have a meeting with some doctors. Eric and I decided that he would come up on his own as I was having difficulty travelling back and forth from the c-section. When Eric got to the hospital Destiny's nurse paged the doctors that wanted to talk to him, and he waited. Finally the doctor that wanted to talk to him showed up, the transplant surgeon. He explained how with the kind of trauma  Destiny's heart had gone through during surgery it was very unlikely that she would ever be able to support herself off ECMO, and that we needed to consider our other options.

The options they gave us were compassionate care (where we remover her from all support and let her pass peacefully), or transplant. The doctors were all pretty much convinced that our special little girl was not going to make it. They decided that they would give her the weekend to see how she was doing, and on Monday November 22 we were to meet with the transplant surgeon again. On Friday November 19 they called us to tell us that they had decided to switch her from ECMO to LVAD (http://en.wikipedia.org/wiki/Ventricular_assist_device) which basically would force her body to oxygenate her blood, but would still allow her heart to rest. It was one step closer to her supporting herself, but they were unsure how she would take to the change. She handed the switch much better than anyone thought she would and over the weekend they were able to clamp her off of the machine (make her heart do some of the work on it's own) and she handled it well.

On Monday November 22, just hours before we were to meet with the transplant surgeon, the doctors decided she had been doing well enough to try and take her off LVAD completely, our little fighter was ready to fly on her own, and she certainly did fly! She amazed us, the nurses and the doctors, they had warned us that she would probably be fairly unstable for a while after coming off support as her body had to adjust and they would have to adjust her medications, though she wasn't in the greatest condition coming off support she stayed right where she was.



November 24, 2010-2 days after coming off LVAD

 So instead of having to meet with the transplant surgeon, our little fighter supported herself and slowly started getting better. Her sternum was still open, so the next goal was to get her chest closed up, and that was another really long process!