Last night was rough. Eli's apnea monitor alarmed 28 times for high heart rate. Today he had his appt with the cardiologist. They did his ECHO and then we met with the cardiologist. The ECHO looked good. The clot is definitely gone and the calcified leason is mostly gone as well. Now it's simply scar tissue and a thickening of the heart wall there. The heartrate was again high.
The cardiologist agress that the robanol is causing heart issues. He wants him off of it. He also believes that Eli's trouble with secretions is causing a small amount of respiratory distress and causing an increase in heart rate as well. He says meds to lower the heart rate are going to have to many side effects for a kiddo like Eli. He's also very concerned about Eli's risk of developing cardiac myopathy. He says that basically each heart is born with so many beats. Eli is plowing thru his heartbeats at a ridiculously fast rate. Long term this is obviously a major issue and by long term he means we will begin seeing effects from it fairly soon. He agrees that a trach is the best option. He will obviously continue to follow Eli during the whole next stage of the process and continue to closely monitor his heart thru all of these changes.
So it seems as though we are basically out of choices. It's rough.
We are working thru all of our thoughts and feeling and fears.
Tonight is Emily's choir conference so we are going to try to go and simply enjoy that and try not to think about it all.
More updates tomorrow.