A Wonky Kind of Beautiful: the daily news

Friday, March 5, 2010

the daily news

well, this morning has been nice. asher's drainage is slowing significantly, and one of the tubes will actually be coming out today!! last night they took out one of the IVs in his hand, and the other will likely come out today. they had left it in so that they would have it for an extra diurretic... but his puffiness is now almost gone, so no extra diurretic!! the HCT is doing a wonderful job on its own, so they're leaving it.

we're hoping to see immunology today (ok, they are. i know i'll be more lost after the consult than i am now!) so they can get some answers about his t-cells.

as for his intake, well, yesterday i ordered all three meals for him, and all he ate was half a fry. this morning, though, he helped me pick out his breakfast, and he actually ate most of a hashbrown and drank some chocolate milk (he's getting whatever he wants right now to inspire some eating... we'll see how well it works for lunch).

he still doesn't want to move or talk. he pretty much just lies in his bed holding on to his monkey and watching treehouse. we tried going for a walk last night, but he didn't want to. he only walked about 10 feet and was protesting the whole way. this is the hardest part, seeing him like this. it's just not what he's like. mind you, i completely understand. if i'd been through what he's been through this week, i'd be more than a little sad, so i'm just trying to keep him as happy as possible, spoiling him rotten, cuddling with him as much as possible, and telling him how brave and strong he is. he'll get past this. i think he just wants to go home.

on that note, we're not going home today, but i'm hoping for monday, since they don't like weekend discharges. we'll see. anyway, it's time for lunch, so i'll talk to you later! :)

1 comment:

Kacy said...: Just got caught up on Asher's little life! I'm Mary Clare's mom and thought I'd pop in to say hello. I'm thrilled to have found your site. MC will have her Fontan this summer, and seeing how well little Asher is handling it really inspires me! (Well as "well" as open heart surgery can be, I guess, right?)

Thanks so much for sharing your journey, it helps me tremendously to see another family go through this and actually be "okay!" What a little miracle these kiddos are! I look forward to following little Asher!

I will certainly be watching and hoping everything continues to go so well!
Love, Kerri Pennington
www.babypennington.com; March 5, 2010 at 2:09 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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so so true

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Friday, March 5, 2010

the daily news

1 comment:

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

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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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