A Wonky Kind of Beautiful: see? sometimes it's GOOD to be impulsive!!!

Thursday, December 3, 2009

see? sometimes it's GOOD to be impulsive!!!

this afternoon, i had a to-do list a mile long. and two boys to get dressed so we could pick blithe up from the bus stop. what did i do?

what every good mother does.

sent an email to 2 cardiologists and asher's surgeon.

i said that asher has just turned 3, and he's an amazing person, doing very well, full of life and love and energy ("thank God for HLHS!! if he had a whole heart, i'd never catch him!! LOL"), and how much i appreciate all their hard work to keep asher going.

so i got a nice little note from dr p, who couldn't believe it's been 3 years already.

and then...

i got a reply from...

dr c, asher's surgeon. (see A Lexicon of Asher, on the right sidebar. yup, that's him.)

apparently, he's very happy to see that asher's thriving, and loved the pics. and...

he wants to use asher's story on a website that will be launching within the next month. it will be a place for CHD patients and families, and he thinks asher's story will be a huge inspiration to other heart families. can you imagine being a mother who has just been told her baby has HLHS, and all those feelings (believe me, it's not the greatest news to be given), and then she reads about asher, and sees his pics and how cute and happy and healthy he looks?!

so that's the awesome email i got from the surgeon, and the exciting thing ash and i get to be part of. (some of you were wondering what i was talking about on my status lines earlier tonight. now you know. lol)

i'll post the link when the site is up and running. :) so stay tuned, then check us out!! :)

3 comments:

amanda said...: that is very exciting! i'm sure asher's story will help many families. the world needs more impulsiveness sometimes :); December 3, 2009 at 11:23 PM
Lena said...: thats awesome! His story is an inspiration that will help many others out there get the support they need through difficult times :); December 3, 2009 at 11:31 PM
Wendy said...: Oh my goodness, how wonderful! Asher's story will help so many! How great that there will be a website....those first few days/weeks after hearing "congenital heart defects" are so overwhelming, it will be so good for families to have a resource and to see proof that there is hope, that these kids are so amazing, such fighters, such heroes. And that they do leave the hospital and get to be "normal" kids. How amazing that you and Asher will be part of this :); December 4, 2009 at 10:01 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

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Thursday, December 3, 2009

see? sometimes it's GOOD to be impulsive!!!

3 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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