So back to the hospital I go on Thursday morning. Kevin reported C had a pretty good night. He had started to give her Gatorade around mid-night, put her glasses on and she was watching her favorite movie, Rio. I was happy she had a good night and was thinking, oh good, C got all the bad stuff and drama out of her system. I was really thinking she would just keep getting better as the day went on.
C's surgeon came by and talked to us again because everyone was still concerned about her lower oxygen sats. He mentioned several possibilities but the three he thought sounded the most reasonable for her lower sats was either 1) her fenestration, the hole put in her heart during surgery as a safety measure and a method for faster healing, was to big for her thus shunting too much blood through the hole and not sending enough to her lungs, 2) she has some massive collateral in there that was either missed in the cath or was not concerning enough in the cath to coil at the time but when he changed the pressure in her system, it opened up and is taking blood away from her heart or 3) due to her unique anatomy when he attached the conduit for the Fontan he had to put it in the same place where he placed her pulmonary veins in a previous surgery and the conduit is putting pressure on the veins. He eventually decided that it must be some collateral because the echo, pulmonary pressures and blood gasses do not support the vein pressure or too much blood shunting through her fenestration. So, he originally mentioned he could take back into surgery to fix the fenestration (talk about stopping my heart...just kill me now) or doing a cath too see what was going on and possibly coiling up any collaterals.
Well, C continued to show improvement throughout the day. Her oxygen saturations were slowly creeping up, even teasing us with showing 80 a couple times. Her echos continued to look good. Her chest x-rays were showing improvement in her left lung. Her blood gas tests were all showing normal levels. The cardiologist was pretty much ruling out cath for Friday because she really wanted to give her some more time. She was asking for and getting drinks and we were running Pediasure through her g-tube to get her ready for starting food the next day. The intensivist talked about starting to pull lines. We were absolutely going in the right direction. Around 3pm things started changing.
She started looking more peaked to me and less engaged (more lethargic) to me. I put on Happy Feet for her to watch and was giving her small sips of water when she feel back to sleep. Even though she seemed a little off I was just chalking it up to her having a major cath, major surgery and super hard recovery back to back. Well, how wrong was I. She went into tachycardia arrhythmia. Briefly. She broke it herself and being as though she was already getting the one anti-arrhythmia drug since after surgery, I was upset but when I saw her break it, I was thinking it was being managed.
She did not do anything else crazy so I was hoping she was okay.
Kevin got back after taking a nap at the hotel and we went to eat while my stayed with C. I think we were gone 30 minutes total. When we got back my mom told me she broke rhythm again, but was able to come out of it. So we are just watching her and Kevin and I both notice she just does not look so good. Mostly sleeping, not really asking for much to drink and not watching the movie Rio we had playig for her. I was just starting to think about leaving to go to the hotel when she went into atrial tachycardia again. And then she stayed there. And the nurses and doctors were doing everything they could to get her to break it. The doctor hete was speaking with C's EP cadiologist to coordinate what to do. They tried everything. They were able to stop the looping rhythm but were unable to bring the fast rate completely back down to normal. More drugs, more additives run. C's heart is just not cooperating. The doctors finally started pacing C with an external pace maker connected to her pacing wires. They were able to get her somewhat stable and I finally left to go back to the hotel around 2am. I realized staying any longer was not an option as my body was giving out. Of course I did not actually go to sleep until I heard from Kevin a few times assuring me C was not dying.
C continued to act up through the early morning and still has not broken the fast heart rate, atrial tachycardia. When I got up around 7:30, I called Kevin to check on C and was immediately on my way back to the hospital.