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| At my every 2 years cardiology appointment, 2018 |
Andi finally had her heart surgery, Complete A/V Canal, (A Complete A/V Canal is a complex heart surgery that repaired a hole in an upper chamber, a hole in a lower chamber and made one large valve into two.) on 9/1/10, after a few weeks of reflux-induced (stomach, bladder) infections, and pneumonia. She was such a mess in heart failure. The diuretic Lasix (and sometimes a second, potassium-sparing diuretic) would make her pee off excess fluid, so her heart wouldn't have to work so hard, but if she lost too much fluid, she'd dehydrate and have trouble breathing. It was such a shit show of I don't know -- things like "we'll see," "it depends," and "Andi will let us know." Like most medicine, it's a damn guessing game. A balancing act of chemicals. Sad, but true.
Reading some of those early entries, makes me forget all the many things I should be doing (including getting Andi off her iPad and off to bed)... and transports me back to a time where we weren't sure we would even be together another day.
Here are a few of my favorites:
Sadly, the photos of that time were lost. I mean, I still have the photos, but they were deleted from some photo album account that fed this blog. Honestly, I just haven't made time to plug those old photos into this blog. Sort of low on the totem pole of life, ya know? But the visual account of what her frailness looked like. The sweats from the Lasix, the mouth goobers, the big ol' dark eyes on this lil' bitty head.
It also doesn't surprise me to revisit the damn leaky g-tube. I forgot that bitch (sorry, Dad... but honestly, it was a hell of a thorn all damn day long) started leaking way back then. I think it was March of 2011 where her pediatrician had her admitted to figure out why she was dehydrating. That, and to probably get me out of his office several times a week complaining about the leak. When they pouched it (and they admitted it was not a great method of collecting data), but they determined she was leaking out 25-35% of each feed, sometimes up to 50%. Uhm, yeah. The "solution" caused more problems in the end, and they had to surgically tuck her stomach lining back down the hole and close it up. Uhm, yeah. So, it's interesting to me to revisit these entries and transport myself back then. I am guessing the entire medical community is thankful that they saw me then, and not who I am today. My mouth and I probably wouldn't have allowed half of the guessing game bullshit she endured. I found my voice as I got more entrenched in the life as a CHARGE parent. But today's voice would be a version of an angry Madea who would probably get security called, repeatedly. Again, it's a good thing for them. Most of them are good people. The g-tube surgeon though needs a rusty fork taken to his private parts. Just sayin'. See... I'm not as pleasing as I used to be... but then again, we survived all this shit. We were lucky.
Still humbled, still grateful. I still think of Dr. Stephan Langley and his incredible team who performed our successful surgery. I am sad that I no longer know where he is to send him a yearly heart surgery update, and I'll probably forget to put together an update card for her old cardiologist (Dr. Kelly) at OHSU, but damn, if we aren't totally grateful to all the many people who helped get her here. (Minus of course the first (*&^$@&a$$clown) g-tube surgeon who I want to poke holes in.) The second surgeon though, whose name honestly escapes me this minute, his work was perfection.
And furthermore, we move forward with our broken, one-mended heart, and keep our friends we've lost so close to those hearts. None of us are guaranteed a tomorrow. This life of ours, reminds us of that more often than yours likely does. It is in their honor we hope to remind you, so you cherish your time by making it the best use of your time with us. Grateful. Humbled. Love.
Just to reiterate, the cardiology check-up showed her heart function is totally stable and better than deemed two years ago. Her cardiologist is very happy with how she is doing.
Now, the CHARGE Syndrome Foundation has begun a new fundraising campaign. Andi's personal goal was somewhere around $8,000,000.00. Given you apparently know Andi, have possibly read about how CHARGE Syndrome has affected her life, the good and the bad... I would ask that you consider clicking over to her fundraising page and throwing a few bucks toward "her" effort -- okay, mine. If we raise $3k, we get a free admission to conference in Dallas next year. Although, if we achieve that, I will likely donate it to someone that otherwise wouldn't be able to attend.
https://www.classy.org/fundraiser/1595392
So as we celebrate our 8th heart surgery anniversary, I ask that you be mindful of your own wellness, be thankful and kind, and be extra generous by helping to kick Andi's fundraising campaign into gear.
It also doesn't surprise me to revisit the damn leaky g-tube. I forgot that bitch (sorry, Dad... but honestly, it was a hell of a thorn all damn day long) started leaking way back then. I think it was March of 2011 where her pediatrician had her admitted to figure out why she was dehydrating. That, and to probably get me out of his office several times a week complaining about the leak. When they pouched it (and they admitted it was not a great method of collecting data), but they determined she was leaking out 25-35% of each feed, sometimes up to 50%. Uhm, yeah. The "solution" caused more problems in the end, and they had to surgically tuck her stomach lining back down the hole and close it up. Uhm, yeah. So, it's interesting to me to revisit these entries and transport myself back then. I am guessing the entire medical community is thankful that they saw me then, and not who I am today. My mouth and I probably wouldn't have allowed half of the guessing game bullshit she endured. I found my voice as I got more entrenched in the life as a CHARGE parent. But today's voice would be a version of an angry Madea who would probably get security called, repeatedly. Again, it's a good thing for them. Most of them are good people. The g-tube surgeon though needs a rusty fork taken to his private parts. Just sayin'. See... I'm not as pleasing as I used to be... but then again, we survived all this shit. We were lucky.
Still humbled, still grateful. I still think of Dr. Stephan Langley and his incredible team who performed our successful surgery. I am sad that I no longer know where he is to send him a yearly heart surgery update, and I'll probably forget to put together an update card for her old cardiologist (Dr. Kelly) at OHSU, but damn, if we aren't totally grateful to all the many people who helped get her here. (Minus of course the first (*&^$@&a$$clown) g-tube surgeon who I want to poke holes in.) The second surgeon though, whose name honestly escapes me this minute, his work was perfection.
And furthermore, we move forward with our broken, one-mended heart, and keep our friends we've lost so close to those hearts. None of us are guaranteed a tomorrow. This life of ours, reminds us of that more often than yours likely does. It is in their honor we hope to remind you, so you cherish your time by making it the best use of your time with us. Grateful. Humbled. Love.
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| Watching Moana while getting an echocardiogram. I delighted the echo tech by yelling/screaming during a scary part of the movie. She easily jumped a foot or two and then giggled when she realized what I was doing. |
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| Flirting while getting my ECG. |
Now, the CHARGE Syndrome Foundation has begun a new fundraising campaign. Andi's personal goal was somewhere around $8,000,000.00. Given you apparently know Andi, have possibly read about how CHARGE Syndrome has affected her life, the good and the bad... I would ask that you consider clicking over to her fundraising page and throwing a few bucks toward "her" effort -- okay, mine. If we raise $3k, we get a free admission to conference in Dallas next year. Although, if we achieve that, I will likely donate it to someone that otherwise wouldn't be able to attend.
https://www.classy.org/fundraiser/1595392
So as we celebrate our 8th heart surgery anniversary, I ask that you be mindful of your own wellness, be thankful and kind, and be extra generous by helping to kick Andi's fundraising campaign into gear.
