Sorry for the lack of blog posts. We have had a horrible time connecting to wi-fi the past couple of days. Even doing updates from the IPhone weren’t posting. Very weird. Luckily, we have gotten our Apple products to connect but the PC laptops are another story.
Andrew continues to slowly get better. Yesterday was a very rough day, but today is better. While we aren’t getting very many smiles, we are starting to see our Andrew come back. Overall, he is still fairly grumpy, moody and whiny!
While they are working on getting him to eat and drink more and also get out of bed, there are two bigger issues. As with a lot of Fontan kids, Andrew’s chest tubes are draining like crazy. The rate has increased significantly over the past 24 hours. There is a strong suspicion that we may be here for several days until it clears. We were prepared for this since it is one of the more common issues after surgery. We also know that Andrew likes to do the opposite of what everyone thinks, so we really hope that he is listening!
There is one issue that has popped up that we were not expecting is the funny heart rhythm that is going on (another Andrew trait!). It is an atrial bigeminy rhythm. My basic understanding is that there is a regular heart beat quickly followed by a “false beat” that comes from only the top chamber of the heart (atria). Then there is a gap followed by another heart beat. We can see it quite clearly on all of his monitors and was quite the dominant issue during an echo today. Basically, it looks like Andrews heart rate is 160 (which is fast for him). However, only about 80 beats (slow for Andrew who is usually 100-110 bpm) are “profusing” or capable of sending blood to the tissues.
It is not a super dangerous rhythm as long as Andrew tolerates it well. However, it was decided early on by cardiology to treat it right away. Everyone remembers Andrew and his penchant for throwing big curveballs. Basically, the cardiologist in the ICU “doesn’t trust” Andrew. Therefore, he is on an IV drip of amiodrone to slow his heart rate way down. The they set the pacemaker at a faster rate than his heart so that the pacemaker dictates the heart rate. In order to “capture” the atrial beats, the pacemakeris set at 145 beats per minute (bpm). The pacemakers external. They always place pacer wires during surgery just in case of things like this. They are just pulled when not needed anymore.
We are in major wait and see mode. It is too early to speculate how long we will be here. It is too early know if drainage will be a huge issue or if the the rhythm issue is temporary or permanent. Cardiology thinks we will go home on the amiodrone because the rhythm issue won’t clear before we go home. Surgery thinks that Andrewis going to drain fluid from. His chest tubes for awhile so we have plenty of time to settle out the rhythm issue. It’s up to Andrew and his system to figure it all out!
The best news is that Andrew is more alert and active. He is doing so well with all of the procedures and meds. While he will voice his displeasure and sometime fight, overall he is cooperative and sweet. We can’t say enough about the wonderful doctors, nurses, child life specialists and staff who take such good care of our baby. The new CVICU is very nice, even with some hiccups. We also have such wonderful friends and family taking care of us.
Hopefully we will get our tech issues figured out so I can update more (hopefully with pics!). Thanks for all of the prayers!
