Kate went back for surgery early in the morning and it was another very long day for mom and dad. We finally got to see her around 7pm and she looked how we remember from the last surgery...lots of meds, open chest and pale. Her surgeon told us things were technically perfect in the surgery, but it would still be a long first night. Her oxygen saturations were very low, which is expected right after the Glenn due to the change in circulation. Her saturations were in the 50s (he said 55-65 was good for first 12 hours). So we waited and watched her heart rate and saturations. Around 1am, Kate went into JET again (did this after her Norwood), where her heart rate shot up into the 215 range (she was 160s out of surgery)...so we thought for sure she would be put back on ECMO...but this time her incredibly fast heart rate was not affecting her blood pressure. So they gave her meds to slow her heart rate down and we waited. She was not in normal sinus rhythm, but her surgeon told us that once her heart rate went down, she should go back into normal rhythm.
Over the next couple of days her heart rate actually slowed too much due to the meds and they used a pacemaker to keep her at a constant 140, to keep blood pressure up and try to help her saturations. She eventually went back into sinus rhythm and was able to come off the pacemaker. Her oxygen saturations did not improve over the next few days...we would get excited to see some 60s and even low 70s, but they did not last long. By Friday night, everyone was worried about what to do next. Her saturations were in the 50s and by this time they should have been in the 70s. The next day, Kate went to cath lab to figure out what was going on. They found no blockages, but did balloon her left pulmonary artery. Right after cath, her saturations were in the 70s, so we prayed that corrected her problem. But throughout the day Saturday and into Sunday, she was back into the 50s. I went home Saturday night to see Jacob (had not seen him since Monday night). When I returned Sunday afternoon, Kate had gotten even worse. Her head was swelling and her saturation was 40. Dr. Fiore told us that he wanted to re-open her chest to see if that would help, and she would probably be heading for surgery again very soon. At this point I sent Craig home with Jacob to drop him off and come back for another round of surgery.
As I sat in the waiting room staring at the picu doors, I saw the dreaded machine go through the doors...yes ECMO was back and I knew it was for Kate. Everyone feared she would not make it through the night if she was not put back on. We had hoped and prayed we would never see that machine again, but I knew it was our only option to get us back to the operating room. Opening her chest did not help, so Dr. Fiore put her on ECMO for the third time. The nurse later told me that when Kate was put on ECMO, her saturations were 27 and they immediately shot to 94. Deep down, I truly believe Kate would have not made it another hour if she wasn't put on ECMO.
We were told that Kate was not tolerating her Glenn anatomy and the plan was to take down her Glenn shunt and go back to Norwood anatomy. We felt totally deflated...we had waited months to get to this surgery to hopefully get home, and now we were back tracking and putting Kate through another surgery. At this point, we knew we had no other options, so we went to surgery on Thursday 9/27.
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