9.29.13

Last night was one of the scariest nights we have had since being here. Turns out it was not really something to be scared about, but in the moment it was alarming. Around 5pm Alexis started having some really high heartbeats. Her normal is 150-170 beats per minute. Last night it suddenly jumped to 210 and went up to 220 at one point. The monitor was going off and all of the nurses came in at once. Several more walking by asked if everything was ok. I knew her heart rate was really high, but the nurses were not in a position to tell me why. Alexis was able to get herself out of that episode but I was holding my breath and waiting for it to happen again. ***** 30 minutes later it happened again and they rolled in the EKG machine. It has 8 probes that had to go on her chest, then all of the stickies on her chest have a thing clipped on them. By the time they got it hooked up she was out of it again. They left it on her and said if it happened again she would probably need to get an iv because they want to make sure she is able to get out of it safely. Well, the next episode was a doozy, lasting around 3 minutes rather than 30 seconds like the others. Thankfully they captured it on the EKG and sent the strip down to the cardiologist immediately. She had a hard time recovering from this one and her oxygen sats stayed lower than recommended for quite a while afterward. Her oxygen was bumped up and she started doing better. ***** The cardiologist finally came up to talk to us and explained what she thought was going on. Basically, it looks like the cells that tell the heart to beat are either being overridden by other cells that don’t normally have control, or the cells are not exactly in the right spot in her heart which confuses her heart sometimes. Regardless of what her specific situation is, it can be controlled with medicine. Also, it seems this is not necessarily related to her HLHS. Normal hearts can have this issue, too. ***** The cardiologist also said that as long as she is stable through the irregularities then it is not critical for her to come out of the episodes immediately. That means her blood pressure stays stable, her oxygen sats are still in her safe zone, and her pulses stay strong. So far this has always been the case throughout, except during the recovery period. We can help her recovery quickly with oxygen, though. All of that information helped me feel much better about the new issue. I had noticed that Alexis did not get upset when her heart was racing like that, which was confusing at first. She could have this issue for her entire life, or she could outgrow it. We are grateful that it doesn’t seem like a big deal and we pray she outgrows it soon. ***** Her feeding progress is coming along very slowly. Jason has been able to get her to take 10ml, but she won’t drink any for me. We are praying we can get her into a swallow study before we have to make the g-tube decision. I’m feeling a little like we should just get the g-tube and get home, but I don’t want to rush things because I know she is so safe here. If we were already home we would not know about her new heart rhythm issue, so I’m glad we are still here. Please pray for us as we continue to forge ahead through this feeding situation and that her heart responds well to the new medicine she is on. Thank you!