Mind blown
We've had a long week in Salt Lake for several more appointments this week. Today, blew my mind. Cardiology appointments are always nail biting and today was no different. Spencer had to follow up on his most recent heart rhythm issues and the new meds he's been taking. The medication has been making him quite sick. He's been feeling so many problems with his heart too.
Just to recap, back in August, they made some adjustments to his pacemaker so that whenever he showed signs of a sudden drop in his heart rate, causing him to pass out, his pacemaker would force his heart to 90 beats per minute and hold it there for one minute. Spencer has made several comments that he constantly feels like his heart is at 90 bpm, even when he's just sitting around. Well, he was right.
The device team downloaded all of his information and his pacemaker had to perform that forced heart rhythm over 2000 times! 2000 times...that is not a typo...two thousand times!
2000 times in the past 6 weeks, Spencer's heart went into a sudden drop of rhythm and was forced to 90 bpm to keep Spencer upright and conscious. These drops are similar to what proceeded his cardiac arrest two years ago and the year prior to that. When the device nurse was downloading the pacemaker she asked if Spencer had noticed his heart being forced into a higher beat and Spencer said, "All the time!" When she saw the data, she was stunned..."Ya you have, over 2000 times!"
I'm still a little in shock. A lot really. It made saying goodbye this afternoon a harder than usual task to do. I quite literally have had to place that boy in the hands of God and walked away. A side note, just in 6 weeks, his heart has experienced nearly a 5% increase in abnormal pacing. It just makes me sick. The unpredictability of things is difficult.
I asked the doctor what is happening because I really don't understand how we got here. He clarified that it's not the structure of the boys' heart that is awry, its their nerves in the heart that isn't allowing their heart to beat normally. This is related to their autonomic nervous system dysfunction. Honestly, the more I'm learning about their dysautonomia, the more serious I can see it is.
As for Sam...things are kind of on hold from a GI viewpoint. He is basically in the same boat as his siblings but so far, no tests or procedures for him. I need to gather some missing data the doctor wants from past testing before she decides where to go next.
Just to recap, back in August, they made some adjustments to his pacemaker so that whenever he showed signs of a sudden drop in his heart rate, causing him to pass out, his pacemaker would force his heart to 90 beats per minute and hold it there for one minute. Spencer has made several comments that he constantly feels like his heart is at 90 bpm, even when he's just sitting around. Well, he was right.
The device team downloaded all of his information and his pacemaker had to perform that forced heart rhythm over 2000 times! 2000 times...that is not a typo...two thousand times!
2000 times in the past 6 weeks, Spencer's heart went into a sudden drop of rhythm and was forced to 90 bpm to keep Spencer upright and conscious. These drops are similar to what proceeded his cardiac arrest two years ago and the year prior to that. When the device nurse was downloading the pacemaker she asked if Spencer had noticed his heart being forced into a higher beat and Spencer said, "All the time!" When she saw the data, she was stunned..."Ya you have, over 2000 times!"
I'm still a little in shock. A lot really. It made saying goodbye this afternoon a harder than usual task to do. I quite literally have had to place that boy in the hands of God and walked away. A side note, just in 6 weeks, his heart has experienced nearly a 5% increase in abnormal pacing. It just makes me sick. The unpredictability of things is difficult.
I asked the doctor what is happening because I really don't understand how we got here. He clarified that it's not the structure of the boys' heart that is awry, its their nerves in the heart that isn't allowing their heart to beat normally. This is related to their autonomic nervous system dysfunction. Honestly, the more I'm learning about their dysautonomia, the more serious I can see it is.
As for Sam...things are kind of on hold from a GI viewpoint. He is basically in the same boat as his siblings but so far, no tests or procedures for him. I need to gather some missing data the doctor wants from past testing before she decides where to go next.
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