Friday, March 25, 2011

nothing good comes from a 4 year old flirt

especially when that 4 year old flirt is asher.

and he's not flirting with anything good.

so, we saw paeds this afternoon. asher has been puffy and pale for the last few days, and pretty short of breath. as in, well nigh gasping for air after walking across a room. nice.

now, the other week i took asher in to see our amazing dr b when asher was puffy. his ear was pink, and his lungs were wet, and his liver was down and actually lower than it's been in a very long time. she called cardio, who said, "as long as he's doing well with his feeds he should be ok." ("feeds"?? is asher a baby???)

this week, asher's liver is still down, his heart rate is 100 (dead-on, as usual... sound paced to anyone else?), tachypnic (breathing fast, like 50 breaths per minute), his liver is still just as far down. he's puffy, pale, tired, not eating much, not peeing as much, sweaty and warm (not feverish), a bit irritable, short of breath, etc etc etc....

oh, yeah. and his legs are puffy.

which they never are.

ever.

ever.

amazing dr b says, "well, asher's definitely flirting with CHF. i'm going to suggest you go to hamilton and spend the weekend at your parents'. that way, if he needs to be seen, you're closer to SickKids emerg."

but, before we left, she decided to call london cardio.

but she called and spoke with the cardio on call. for the record, it's the same doc who has said, "oh yeah, these symptoms (of severe CHF) are normal for this stage," "as long as he's tolerating his feeds, he's fine," and "are you sure he's hypoplastic left?" so you can imagine what i expected.

but what he said was...

wait for it...

"give him some lasix and see how he is on monday."

wha---?!?!?!

this doc, famous for brushing off everything, took this seriously and prescribed a med to deal with it.

oh, wait. some of you might not know what lasix is. it's a diurretic. it's job is to make the patient pee a lot, thereby removing excess fluid from the body. in CHF, the heart doesn't function well enough, so blood doesn't move through the body properly, and fluid leaches out of the blood and accumulates in the tissue, usually around the eyes, fingers/hands, and feet/ankles. this also increases blood pressure, and will cause the heart's function to decrease proportional to the amount of fluid build-up. it's a vicious circle, and lasix (and other diurretics) are designed to stop the cycle. ideally, it stops CHF in its tracks.

sounds good, you say?? well, yes... generally... which is to say, the idea is good, but the proposed med is a no-go for asher. you see, asher has nephrocalcinosis. this means that there is a build-up of calcium in the kidneys, which impairs renal function, which increases blood pressure, decreases heart function, which impairs renal function, which increases blood pressure... yup, another vicious circle. and lasix... causes calcium to build up in the kidneys.

delightful!!

but asher can't have lasix, so so i asked dr b prescribe HCT instead. HCT (hydrochlorothiazide, which i spell out merely to show off, haha) is another diurretic, albeit a milder one than lasix. so instead of one dose, dr b prescribed seven. haha

anyway, there you have it. asher's flirting with congestive heart failure. and i'm going to spend a freaxious weekend watching him and praying that the HCT will handle things and he'll feel better.

that being said... please continue to pray for him. i still have my suspicions about the pacemaker, which was supposed to get checked on wednesday in toronto, but due to horrible weather, we didn't make it. asher and i got stuck overnight in hamilton, actually. but he is still complaining frequently that his heart is "sick" or "hurting" or "feels squeezed," and he was going to tell our toronto cardio this week that he frequently gets a lot of pain in his chest, left arm, neck, shoulder and jaw. he also tells me fairly often that his heart is "burning." this has been mentioned to cardio (london)... and yet, even though they know he doesn't generally reflux anymore unless his heart is doing things it shouldn't... they brushed it off. sigh. i know the reflux will resolve when his heart improves, so i'm not concerned about the reflux itself. it's just frustrating to know that something is wrong and docs don't seem to be listening.

so please pray for me, too. i'm tired, to be honest. the fontan was supposed to be it. it was supposed to usher us into the "promised land," where hearts are stable for a very long time and we can enjoy normal life. granted, he's more stable than he's ever been in the past... but that's not saying much. so i'm tired of all this heart stuff, and asher's tired of all this heart stuff, and i'm feeling burned out, and asher's scared of doctors again.

anyway, there you go. a little update. if anything happens over the weekend, i'll let you know. and when we see a doc next week (still need to reschedule for toronto), whether it's cardio here or there, or paeds, rest assured i'll fill you in on that, too. thanks for the prayers.

5 comments:

Wendy said...

((hugs)) that stressed me out just reading it! Seriously! I am impressed that London prescribed something, tho, lol I was going "he can't have lasix" in my head as I was reading that..not sure why I remembered that, but I am glad he's got HCT on board...Do you not have an ongoing script for that?
I hope you get in to Toronto soon, it sounds like it's desperately needed.
And I agree, he sounds like he's being 100% paced...but wasn't his pacer set at 80? 100 would be high as the pacer setting wouldn't it? Chris sits higher than that but my understanding was that the norm for this age/weight was around 80.
((hugs))

Wendy said...

Sorry for the long reply....is Dr. C aware of the chest pains etc? Who were you seeing at Sick Kids? Dr. C, Dr. R or the Pacemaker Clinic? His symptoms are alarming and I am sorry to hear of them :( I hope you get answers soon and they are simple...like a med and pacer tweak, nothing asher-ish and complex.

Pete, Alison and Charlie said...

Sorry Asher is feeling poorly. It must be so nervewracking for you. I know just what you mean about feeling that life post-Fontan is like the promised land - so it must feel like a real kick in the teeth to be landed with more, unexpected complications. It goes without saying that we're thinking of you and keeping you all in our prayers. Hoping that thongs can be sorted simply with meds and a bit of pacemaker tweaking. xxx

Heather said...

hey wen,
his pacer is set at 80, and originally, it was there all the time. occasionally he'd get up to 84-86, but not for long. you could check his pulse and know for sure that it was 80. now it's the same way... but the number is 100. in the last 3 months, there have only been 2 times when his HR wasn't 100. it was 120 last week (once), and 74 when he went to emerg with chest/arm pain.

when the pacer was checked in clinic the other week, it said his HR was 80, but then when his HR was checked with the sat/bp machine, it was 100. ecg said the same thing.

it just doesn't seem right to me... i have that gut feeling that something is wrong with that pacemaker of his. :(

Wendy said...

I am going to find you on line today, we need a catch up. I'm so saddened for you and worried for Asher. Especially after the update that he's packed on all that fluid weight.

SEnding you love and hugs
xo

Wen