Cardiology and Concerts
This week, we had two cardiology appointments, one for Sam and one for Shelbie.
I pretty much had Sam's appointment figured out in my head before we even got there. The hospital sends me quarterly reports on the boys' pacemaker so I can see some basic information. I knew Sam was pacing a lot more than when he first got the device.
He is pacing at nearly 70% of the time from the wire that is placed in the upper chamber of his heart, the right atrium. When he first got it, he was pacing around 40% ...if memory serves me correctly. The part that surprised me was that the lower chamber, the right ventricle started pacing. 17% of the time, the ventricle is misfiring. Our doc was a little concerned about this because it will wear out his heart. He made some adjustments and we are going to see how things go for the next 6 months. It makes me a little weary thinking that his heart is getting weaker and needs more help from the pacemaker. I could worry about this but I'm really going to try to put it aside and move on to something else, at least for 6 months.
Shelbie is kind of the same story. Her heart is okay-ish, at least nothing they can fix. It's all the other things that are stressing the heart, not the heart itself. We had an embarrassing visit for Shelbie's appointment. I should mention, the kids appointments were a day apart from each other. My physical exhaustion continues but even more so, my head is a mess. I think that we've been at this for too long and I am plain and simple, worn out.
In the past, I've been like a walking encyclopedia when it came to the kids and their myriad of diagnosis but this week was different. I was unprepared for the appointments. I had no questions and nothing to say at either appointment. I was caught completely off guard when our cardiologist asked me to go over the boys' Dyskeratosis Congenita symptoms...Ahhhhh...I drew a blank. I had no clue what one single symptom of DC was. I felt ridiculous. There was literally nothing in my brain. I even completely forgot that just 6 weeks ago, Shelbie had the Transesophogeal Echocardiogram. I forgot about the neurologist we met with in the cardiology appointment. I forgot we had met with a cardiac surgeon 4 weeks ago. There was nothing in my head!! That is a first.
I could tell our doctor and his nurse and the PA were confused that I was dumbfounded. They probably thought I was making it all up...at least that is what I felt like. I couldn't get out of there fast enough. Even now, that I've had a day to think about it, there are million questions I should have asked about Sam's ventricle issues. Ugh. I didn't.
I'm worried I'll never get back to my normal self again. Whatever that is.
At any rate...we salvaged the cardiology pain with a surprise from Shelbie. She bought us tickets to the Air Supply concert in Salt Lake. Some weeks ago, we were on the topic of concerts and she was stunned that I had never been to a concert before in my life! So this was some surprise! It was so much fun!
We had a few minutes to get to the hotel and get ready. She paid for a nice dinner and then we walked to the concert hall. We stopped at art galleries along the way. I love art galleries. There was a special glass display commemorating Veterans Day. There were art displays of shards of stained glass collected from all the churches that were destroyed across Europe during WWII. It was beautiful. Then we stumbled upon a gallery with a temporary display of Carl Bloch. I love Carl Bloch. The art galleries alone would have made for a perfect night.
The concert was amazing! It was so fun. I was worried that Shelbie wouldn't enjoy it since the group was long before her time and far from the kind of music she enjoys but she loved it too! I honestly can't remember the last time we felt relaxed. On our walk home, there was a man playing a guitar and singing. Some drunk people were dancing around him so we joined in! Completely opposite of my personality but even that was fun.
I pretty much had Sam's appointment figured out in my head before we even got there. The hospital sends me quarterly reports on the boys' pacemaker so I can see some basic information. I knew Sam was pacing a lot more than when he first got the device.
He is pacing at nearly 70% of the time from the wire that is placed in the upper chamber of his heart, the right atrium. When he first got it, he was pacing around 40% ...if memory serves me correctly. The part that surprised me was that the lower chamber, the right ventricle started pacing. 17% of the time, the ventricle is misfiring. Our doc was a little concerned about this because it will wear out his heart. He made some adjustments and we are going to see how things go for the next 6 months. It makes me a little weary thinking that his heart is getting weaker and needs more help from the pacemaker. I could worry about this but I'm really going to try to put it aside and move on to something else, at least for 6 months.
Shelbie is kind of the same story. Her heart is okay-ish, at least nothing they can fix. It's all the other things that are stressing the heart, not the heart itself. We had an embarrassing visit for Shelbie's appointment. I should mention, the kids appointments were a day apart from each other. My physical exhaustion continues but even more so, my head is a mess. I think that we've been at this for too long and I am plain and simple, worn out.
In the past, I've been like a walking encyclopedia when it came to the kids and their myriad of diagnosis but this week was different. I was unprepared for the appointments. I had no questions and nothing to say at either appointment. I was caught completely off guard when our cardiologist asked me to go over the boys' Dyskeratosis Congenita symptoms...Ahhhhh...I drew a blank. I had no clue what one single symptom of DC was. I felt ridiculous. There was literally nothing in my brain. I even completely forgot that just 6 weeks ago, Shelbie had the Transesophogeal Echocardiogram. I forgot about the neurologist we met with in the cardiology appointment. I forgot we had met with a cardiac surgeon 4 weeks ago. There was nothing in my head!! That is a first.
I could tell our doctor and his nurse and the PA were confused that I was dumbfounded. They probably thought I was making it all up...at least that is what I felt like. I couldn't get out of there fast enough. Even now, that I've had a day to think about it, there are million questions I should have asked about Sam's ventricle issues. Ugh. I didn't.
I'm worried I'll never get back to my normal self again. Whatever that is.
At any rate...we salvaged the cardiology pain with a surprise from Shelbie. She bought us tickets to the Air Supply concert in Salt Lake. Some weeks ago, we were on the topic of concerts and she was stunned that I had never been to a concert before in my life! So this was some surprise! It was so much fun!
We had a few minutes to get to the hotel and get ready. She paid for a nice dinner and then we walked to the concert hall. We stopped at art galleries along the way. I love art galleries. There was a special glass display commemorating Veterans Day. There were art displays of shards of stained glass collected from all the churches that were destroyed across Europe during WWII. It was beautiful. Then we stumbled upon a gallery with a temporary display of Carl Bloch. I love Carl Bloch. The art galleries alone would have made for a perfect night.
The concert was amazing! It was so fun. I was worried that Shelbie wouldn't enjoy it since the group was long before her time and far from the kind of music she enjoys but she loved it too! I honestly can't remember the last time we felt relaxed. On our walk home, there was a man playing a guitar and singing. Some drunk people were dancing around him so we joined in! Completely opposite of my personality but even that was fun.
Air Supply and a street concert!?! Awesome!!!
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