A Wonky Kind of Beautiful: you've gotta check out this blog! (click the title of this post to take you there)

Monday, May 10, 2010

you've gotta check out this blog! (click the title of this post to take you there)

i have a link to this blog on the side bar (under "heart journeys") but i wanted to point it out to you tonight specifically. the blog is called Adventures of a Funky Heart! and it is written by a man in his 40s who is a CHD survivor... he was born with tricuspid atresia (the valve between the right atrium and right ventricle is closed... similar to asher's mitral atresia, but on the other side of the heart, and creating similar, but distinct, issues).

he's quite incredible, actually, working constantly to raise CHD awareness and to keep his readers abrest of the latest developments in the world of congenital heart disease and surgery... as well as a look back at some significant developments in the treatment of CHD. he also reaches out to his readers; in a recent post, he asked is there was anyone who had, or whose child had undergone, a one-and-a-half ventricular repair.

Funky Heart is a great blog. he updates regularly, his information is very interesting (especially if you're a heart mom, but i'm sure someone else out there might find it interesting, too). he included a link the other day to Dr John M, who is a (adult) cardiologist and electrophysiologist who writes about heart health, cardiology, and healthy living. also a great blog, also included in the sidebar here.

i highly recommend you check out these blogs, if you are at all interested in learning anything about wonky hearts. steve at funky heart is especially inspiring, given that he has CHD himself, and that he works so hard for the cause.

2 comments:

Wendy said...: And he's all around fabulous to chat with. I've emailed him many times or commented on posts and he always replies :) He's been very informative and supportive. Definitely check out Funky Heart! When I first found him I was THRILLED to hear about an adult with CHD! An adult living and loving life with CHD. Very inspiring!; May 11, 2010 at 6:33 AM
Kacy said...: Proud to say he is a "neighbor" of mine! (Both from South Carolina) Steve's story (and blog) is very inspiring! A must read for anyone living with a funky heart or raising a funky heart! :); May 11, 2010 at 2:03 PM

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Inspiration, thy name is Asher

Little Asher was born December 2, 2006 with a rare and severe congenital heart defect known as Hypoplastic Left Heart Syndrome, or HLHS. (In the simplest terms, this means that he is missing the parts of the heart that pump and carry blood out to the body.) He also has epilepsy, problems with his kidneys, and a weak immune system. He has survived feeding and GI issues (and has now been tube-free since January, 2010), sepsis, several staph infections, and heart failure many times over.

In his short little life, he has already made it through 28 hospital admissions and 13 surgical procedures (ten cardiac, three of which were open heart). He has good days and bad days, but still he perseveres. He really is the bravest, strongest, toughest person I know. He's such a trooper - the stuff he puts up with on a day-to-day basis would astound you!

We are all really blessed to have him in our lives. He lights up every room he enters, and you really can't help but fall in love with him the minute you meet him.

Asher's conditions (i can translate and explain, upon request)

severe HLHS (severely hypoplastic left ventricle, mitral atresia, aortic atresia, severe arterial stenosis, severe COA, restrictive ASD, right ventricular hypertrophy, PA hypoplasia, RPV hypoplasia)
congestive heart failure
hypertension
Sick Sinus Syndrome, intermittent AV block
symptomatic bradycardia, junctional escape rhythm
pacemaker
tachycardia (due to CHF and stent material in AV node)
post-hybrid, post-ASD stent
post-Norwood/Glenn shunt
post-hemi Coles procedure, with PA plastes and atrial stent removal
post-Fontan
Post-Traumatic Stress Disorder (PTSD)
?epilepsy
failure to thrive (FTT)
immunocompromise (T-cell deficiency)
dysphasia (difficulty swallowing), causing aspiration
recurrent UTIs
bilateral nephrocalcinosis
renal dysgenesis (underdeveloped kidneys)
history of hypo- and hypercalcuria
dilated renal pelvis (left kidney)
severe GERD
?DiGeorge Syndrome
vagus nerve injury
enteral feed dependency (NG-tube, then GJ-tube, then G-tube) (resolved)

A Lexicon of Asher. words/phrases from life with Asher.

The distal anastomosis is then constructed to the proximal innominate artery using standard anastomotic technique. can you believe, i actually understand this sentence. i don't know the exact ins and outs of "standard anastomotic technique," but basically, as long as you know how to attach a shunt, that's what you do at the far end. that's what all that means.

less than optimal communication. probably one of the most brilliantly diplomatic phrases i have ever heard, thank-you very much, dr atkison. in fact, when he first said it, my jaw hit the floor. you know how much i love language, and this has to be among the best.

freaxious. that horrible combination of emotions, which i suspect may be specific to SN/heart parenting: fearful, dreadful, anxious, nauseous.

it's just a drive in cincinatti. dr caldarone had never dug a stent out of an atrial wall before. i said, "oh, that's not what a mom wants to hear the day before surgery!" he looked at me, smiled, and asked, "ever been to cincinatti?" i said, "um, no..." "but you drive a car, right?" "um, yes..." (totally not seeing where this is going.) he asked, "so would you feel comfortable driving in cincinatti?" "um, i guess so..." (totally confused by now). he responded, "well, this is just a drive in cincinatti." nauseating and funny, all at the same time! LOL

dunno. docs say this a lot when discussing asher.

hopefully, this will be the last surgery he ever needs. these words were uttered by our (usually) delightful and genius surgeon, dr caldarone, after the Fontan. when i bumped into him by starbucks in april, i said to him, "you totally jinxed it!!!" {shakes fist at dr caldarone} then he said these exact words again after the pacemaker insertion. because, you know, when it comes to asher, why wouldn't you tempt fate a second time? {wishes that readers can hear laughter and sarcasm on a blog}

no, no, there's always a reason. we may not be able to figure out what it is, but there's always a reason. once again, dr caldarone, defending himself (or trying to) when i accused him of jinxing asher.

i'm frightened, actually. that was a doc. a smart doc. he has learned a valuable lesson. it makes for easier trips to cardio when the doc knows what asher is capable of... and prone to.

asher. also, asher-ish. adj., as in "asher pink" (pale with faint blue undertones) or "asher healthy" (no trips to emerg in the past two weeks) or "asher-ish complications." he's his own adjective. nuff said.

A Wonky Kind of Beautiful

growing up so fast!!

Best. Quotes. Ever.

so so true

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Monday, May 10, 2010

you've gotta check out this blog! (click the title of this post to take you there)

2 comments:

that's right. he's just. that. cool.

Inspiration, thy name is Asher

Asher's faves

Asher's conditions (i can translate and explain, upon request)

A Lexicon of Asher. words/phrases from life with Asher.

Heart Journeys

Followers

Global Asher

Ways to help (not just us, but any family in times of trauma)

if you don't laugh, you cry

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