A Wonky Kind of Beautiful: days like this... i wish there was no such thing as CHD

Monday, October 4, 2010

days like this... i wish there was no such thing as CHD

when i turned on my computer this afternoon, i saw the news on facebook.

little ewan, who was only two weeks old and was born with tetralogy of fallot, passed away last night.

if you want to check out his story, you can visit his blog. as for me, there's nothing i can say, other than...

CHD sucks.

please hug your children a little tighter tonight. asher's getting all the hugs he'll let me give him.

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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, October 4, 2010

days like this... i wish there was no such thing as CHD

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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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