marydell: (charlie-superman)

So yesterday Charlie had an Echocardiagram (aka ECHO) (result:  good news, for those who can't stand suspense).  He was born with a small hole in his heart called a PFO (patent foramen ovale), which often can close on its own.  At a year old, however, it had grown, instead of closing, and at about half a centemeter was upgraded to being called an ASD (atrial septal defect).  If it continued growing, the doc told us at that time, it would need a repair when he reached 4 years old--a small screen inserted via cardiac catheter.  In the meantime it wouldn't cause any problem, but should be checked yearly. 

He should have had this ECHO about a year ago, but a year ago we were in the midst of random unpredictable violent mood stuff, plus regular vomiting and respiratory illness, so we focused on that instead, ultimately resolving it by treating his apparently very bad GERD and changing his antihistamines.

So, then he should have had this ECHO a couple of months ago, but he decided to have Scarlet Fever on the day he was scheduled, so we had to reschedule.

He should have had it at our local branch of the Heart Institute for Children, but they're booked through the end of winter, so we scheduled at a branch an hour away from home.

Mike was supposed to take him, and I spent a half week agonizing over what a terrible mother I am for conserving my last few vacation days (I have had 4 remaining through the end of March, whereas Mike has a bunch more than that and his roll over in January) in case Charlie needs to get tubes in his ears or some other drama happens before April.  I knew he'd be scared of the procedure and Mike is very comforting but I am Charlie's favorite security blanket.  But with difficulty I reconciled myself to being absent for this.

Then Mike got a cold.  Not a bad cold, but we don't go sit in waiting rooms full of medically fragile children when we have viruses, and this is a pediatric cardiology specialty office.  So I took the day off to take Charlie to his appointment, thus fixing my agonizing about motherhood and replacing it with worrying about my career instead.

So, Charlie was supposed to have the ECHO at 9 am.  We got to the place and the elevator wasn't working. People were taking the stairs and with the help of some M&M's I coaxed Charlie into the stairwell despite his protests of "too scary!" (This after several plaintive "I don't want doctor, no doctor!").  Walking up stairs is something he does happily enough, however, so he was ok with that part although my asthma was a bit annoyed with me.

We got to the office and there were only a couple of kids already in the waiting room.  However, when we signed in the receptionist told us something was wrong with the building power.  The lights were on but the elevator wasn't working, as I had already discovered.  What else wasn't working? ECHO and EKG systems, of course.

Power was restored about an hour later -- a truck had hit a pole or something, so they had to fix a transformer.  There had been kids waiting in the offices inside the whole time, so they still needed to have their procedures before we waiting room people could be called.  Thank god for my Ipad and for those obsessive people who make videos of trains.

Another hour or so and we got to go in and have normal doctor stuff plus the ECHO, which is a set of ultrasounds of the heart done from different angles.  Mercifully Charlie thought that was kind of cool, particularly because at one point it sounded like a train. Also helpful in keeping him from freaking out: my many promises of taking him to a toy store afterwards, plus giving him way too many M&M's and Dum Dums. 

I really, really expected to hear that the hole had doubled in size (Charlie has, himself, doubled in size, after all) and that he'd need surgery as soon as he got to be old enough.  I had just been assuming that and preparing to hear that, for months now. 

Instead, the doctor said the hole had gotten so small that it only showed from a couple angles on the ECHO, and wasn't visible from the other angles.  It's so small now that it's not considered abnormal or medically significant. 

"Goodbye; we won't need to see him again." 
marydell: (charlie-sillybandz)
I'm on my 4th day of prednisone because of a flu-related asthma flareup, complete with constant coughing from hell. So I figured screw it, I'm having a piece of chocolate cake, what are my allergies going to do about it with prednisone crushing my entire immune response? Yay, chocolate cake. Charlie, (who is not sick) apparently noticed, however, because at bedtime he put on his best wheedling voice and said "I need cake!" and when I said no he didn't he said "I got cough! I need cake!"
marydell: (charlie-sillybandz)


Resident physician: "eczema flareup, fever for 3 days, crying, stuffy nose, sore throat...I think this is a virus, it doesn't look like a bacterial infection. I'll prescribe a stronger antihistamine for his rash and then you can continue to give him motrin for the fever and let the virus run its course. Let me just talk to my boss, the attending, and he'll be in to look at him soon."

Attending physician: "You say the eczema flared up after you got a new pattern on his diapers--a lot of kids get rashes from the blue dye in diapers. This rash on his legs looks like it could be from that, and you say it's getting better since you changed diaper brands. This rash on his stomach and armpits, though...and this here inside his elbow...I'd like to do a strep test, because this looks like it might be scarlet fever. "

...

Guess who was right?


Of course, that's why the attending is in charge, and the resident is still studying.

Because we were in the ER, whence we had hightailed when he wouldn't stop crying (he is normally angry when sick, not sad), we got a choice of antibiotic treatments: either 10 days of the pink liquid twice a day, or one big honkin shot for the whole thing. As Mike puts it, "Two out of three Dells voted for the shot."  Charlie didn't get a vote, but he's on the mend and much happier now despite being pretty pissed off about the shot at the time.

marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
So I've been tinkering with my various chemical intakes to try to resolve my fatigue problem. I'm off of HCTZ (diuretic) and my blood pressure is holding steady thanks to the other BP drug I'm still taking. I haven't had an antihistamine in 3 weeks. I tried to stop taking Zantac as well, but that's been declared a failure so I'm back on it as of last night.

Last Tuesday I stopped drinking Diet Coke*, which was my main caffeine vector. Thank God for Advil. All of the changes helped to take the fatigue down to a manageable level, but I still haven't felt what I would call energetic - haven't had a day where I managed to do all three of 1. work at my job 2. feed and bathe the boy and 3. cook for myself. With the idea that removing spare neurotransmitters seems to be helping, I haven't had any chocolate since Thursday. Recently I've been having some every day, since I've tested as no-longer-allergic to it and since soy lecithin isn't reactive for people with soy allergies, per various studies.

Saturday I took Charlie to the doctor, and then to the zoo, and then to lunch at McDonalds. Sunday I took him on some errands, and I did laundry and cooked. Both days I got a crapload of work done on my current graphics project.

So. I just can't have chocolate any more. I don't know what mechanism it's using to fuck with my brain, but it clearly is, because the fatigue seems to have just up and left. And I definitely felt better than I have recently, during the years when I didn't eat chocolate because of allergy.

On the one hand, I feel physically pretty good right now. On the other hand, I am in such a bad mood.

*Deja Vu: I did this last winter as well, and whined about it here, but had to get back on caffeine again as my tiredness started to interfere with driving. Going off the antihistamines seems to have fixed that enough that I can manage sans caffeine again.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
I definitely have rebound edema from discontinuing the HCTZ. But I needen't have worried about my pants not fitting. My pants are fine. It's my shoes that don't fit.

Good thing it's sandal season...
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
My kid's medical situation isn't as complicated or risky as SingleDad's daughter's situation, but this is a very useful model to follow in preparing emergency documentation for a child with special needs, and I'm going to get cracking on making something like this for Charlie right away: http://www.disableddaughter.com/?p=371

If your child has special medical needs that your backup people are not fully prepped for, something like this can help a lot to make sure they get what they need if you're sick or unavailable for a bit.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
So I've stopped taking HCTZ as of last night, while the new doc and I await blood test results for various things. Basically he said if I need more blood pressure correction than my low dose of lisinopril provides, I can take more lisinopril, and shouldn't need a water pill. YAY. I already feel much, much better. I walked up a flight of stairs today, when there was a perfectly good elevator right there, in fact! And I didn't pause to gather up speed first like an elderly fat cat, either.

Now it's a race to see which happens faster:

1. I lose a few pounds because of not needing a constant influx of delicious processed sugar to keep me awake and moving

2. I gain a few pounds because of starting to retain a normalish amount of water in my tissues again

My pants, and my pants budget, are hoping these things happen at a roughly equal pace.


(Note: no weight-loss advice, please)

Spoons

Jul. 18th, 2011 09:55 am
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
This is the first time in my life I've thought about my energy level in terms of Spoons. Normally I avoid using that word to mean anything other than a utensil, because while I have fatigue, it's typically mild. I think the spoon analogy is extremely useful for people who have debilitating fatigue, and I don't want to appropriate it for my inconveniencing-but-not-debilitating fatigue. I'm exhausted at the end of every weekday, but since every weekday involves 4 to 5 hours of hands-on parenting, 2 hours of commuting, and 7.5 hours of office work, this isn't all that shocking. I always figured if I have a day when I'm too tired to go to work, without being ill in any other way, I'll consider whether I might have a spoon problem.

Today is that day. I also have an elevated heart rate, lower-than-usual blood pressure, and leg cramps. This means my problem will probably be easily fixed with a potassium supplement--something I was taking before, but had to stop when I started Lisinopril, because Lisinopril causes potassium retention. HCTZ causes potassium loss and I take that too, so theoretically they were balancing each other out.* However, that thing a couple of months ago where I decided to stop eating ALL legumes, and my allergies got so much better? I suspect that threw the balance off. Anyway, I am seeing the doctor this afternoon, and I hope he will fix me right up. If not, and if this continues, then I guess I'll start counting spoons. For now I'm just going to enjoy the unplanned time off, and eat a lot of bananas.

*As I've probably mentioned before, my whole experience of taking multiple medications reminds me of the time on the Simpsons where Homer has freshwater fish and a lobster sharing a fish tank--he alternates adding salt and adding fresh water until they're all floating on their sides, and since none of them is all the way upside-down/dead, it's a win.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
A personal pulse oximeter is the best gadget ever invented, judging by the last two weeks in my family, anyway.

I bought it to monitor my asthma but it hasn't told me a darn thing about that yet--I'm always at 98 or 99 percent. Either this means I am fine, or that it's not very sensitive--there are expensive ones that the hospital calibrates for you but I don't have a serious enough case of asthma to go that route (yet anyway).

But! It helped us to decide, in a timely fashion, to send one elder family member to the hospital because of a slow heartbeat (they are now recovering nicely after some chemical tinkering). And when it showed my pulse as a way-too-high 108 yesterday, I was able to add that to some other symptoms (Charley horses HURT like whoa! I had kinda forgotten until the other night) and figured out what's been causing my recent fatigue. A couple of bananas and a gatorade later, I seem to have enough potassium in my system to function within normal parameters, for today anyway. (I'll be seeing the doctor tomorrow).

Anyway, it's a small gadget that shines a light through your finger and measures how dark your blood is, as well as taking your pulse, and it costs about $35. You can get one at any drug store that sells medical supplies. If you can spare the money, I definitely recommend it for anyone with non-critical but pesky heart & lung situations, particularly if there is more than one person in your family answering that description. (Critical situations probably call for the more expensive models, unfortunately, because they're a lot more accurate, particularly on the blood oxygen count).

BLARGH

Jul. 12th, 2011 09:47 pm
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
I've just started taking a vitamin that's a rapid-dissolve-put-under-your-tongue type of pill.  So when I dump all of the pills out of my pill minder to take them for the evening, I start by putting that one under my tongue wait for it to dissolve. It's not bad tasting, and it's very small--a teeny, round pink pill.

One of my two blood pressure meds is also a teeny round pink pill.  Designed for swallowing.

Oopsie.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
I've been increasingly fatigued lately, and just chalked it up to generic tiredness--lack of sleep, too much work stress.  I have always had the habit of leaning on nearby furniture when standing up for a long time, but in the past three weeks I've taken to also sidling up to walls so I can lean against them.  This is much harder to do in a casual way than leaning against a desk, particularly in an open-plan office, so I've had to explain that I'm tired a couple of times to people.

Then a couple of days ago I was playing trains on the floor with Charlie, which involves sitting on the rug and pushing a train on a track and saying "choo choo."  He supplies all the enthusiasm and I don't need to budge from the same spot while playing, so it's hardly a taxing endeavor.  But I found myself feeling exhausted and also very bored--like, really wanting to get up, move around, put on laundry, and do some other kinetic things.  That seemed strange to me, because my internal "I'm lazy" narrative would suggest that sitting on the floor would be my preferred activity when I'm tired.

So I checked my breathing with my peak flow meter and found myself in the yellow zone - that is, the zone that says it's time to use an inhaler.  No coughing, no wheezing, no symptoms that I've ever recognized as asthma symptoms.  Damn it!  And looking back I see a pattern of increasing tiredness for the past two months--basically, starting a month after I went off my inhaled steroid.  Google tells me that atypical asthma symptoms include sighing, anxiety attacks, fatigue, lack of concentration...I've spent a couple of months wondering if I'm depressed, but since my mood has been fine it's been very puzzling. Until now.  

So it seems that I may have this low-level constant pre-attack thing happening. I'm seeing my doctor tomorrow night to ask if I can go back on my steroid, and I'm taking a dose tonight because I'm pretty sure she's gonna say yes.

Normally I try not to be irritated with loved ones for unknowingly harming me, but I have to admit I'm irritated right now with all five of the smoking family members I shared a home with as a child. Grumble grumble passive smoke grumble.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
1. I've had reflux for at least a decade, and sometimes I can make it go away by religious adherence to both allergy-diet and reflux-diet, but I am not inherently religious, and I just really have to have caffeine and albuterol, both of which relax the esophagus. So reflux is a fact of my life, and sometimes it's really really bad and gives me bad asthma to boot. (Just like Charlie, which is what helped me to guess what was happening with him) I've never switched off of Zantac onto a PPI like Prilosec despite my reflux-having brother telling me how awesome Prilosec is, because I literally can't go a day without Zantac. Thanks to the reading I've been doing about Charlie's prevacid and general approaches to GERD for toddlers, however, I've discovered that a lot of people take both a PPI and Zantac, just at opposite ends of the day.

So, during a bad bout last week I decided to steal one of Charlie's prevacids just to see. And OMG. Reflux totally went away for 24 hours. I promptly went out and got the OTC version--same strength, just in capsule form instead of meltaway form--and have been on it for about 4 days, and seriously? I didn't know I was capable of feeling this good. The only oddities so far are that I don't seem to get a chemical signal telling me I'm getting full, so the difference between "hm, still a little peckish, think I'll have some more" and "BLARGH SO FULL OOF BLARGH" is like 2 bites. The other is that I no longer seem to drink a lake's worth of beverage with every meal, because I'm not having a hard time swallowing food, apparently. So now I get to discover if I have some sort of brain signal that tells me when I'm thirsty. Also I will need to start taking a proper calcium supplement because I'm not eating 6-8 tums a day (it's usually not that bad, but the past couple of weeks were ridic.)

2. I got my very first bone density scan, and my bone density is way in the positive numbers, yay, so I am not currently headed toward osteoporosis or even osteopenia. This means I can stay on (potentially bone-eating) depo-provera, which in turn means I can keep my (jerkface) internal lady parts for the time being, since on DP they continue their slumber and don't bother me with their nonsense. This makes my heart, in the cardiac sense, happy. So hooray all around. My right hip is somewhat denser than my left hip which I blame on Charlie--I always carry him on my left and I think my bones on that side are being cowed into submission by his heaviness (43 pounds now). To think I used to play "Bonecracker" on the ipod for him when he was a wee 20-something pounds.

3. After going in the sun I got some small discolored patches on my arms, conveniently the day before going to the doctor for other stuff, so I showed them to her and she said they're caused by sun+yeast. Apparently my arms have been eating cupcakes and taking antibiotics while I wasn't looking. The treatment is to wash my arms with Selsun Blue dandruff shampoo (b/c it has selenium sulfide in it), which is weird but fine, if it works. So I got some and it's not blue nowadays; more of a blue-tinged green. In my flailing about with the stuff I splashed a bunch on the wall of the shower and my geek brain went "hey, it looks like I just murdered Spock in here!"
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
(one method, anyway): after a nearly monthlong hiatus without your secondary, tertiary, and supernumerary earrings, stick them all back in your head at once.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
So. As his fans will recall, Charlie has had a rough few months, with asthma, multiple changes to his allergy and asthma medicine, a pretty regular cycle of vomiting followed by respiratory infections, and ever-increasing rage problems. This is on top of his usual food allergy and eczema issues, poor little guy.
 Pile o' medical updatery behind the cut. )
 

 To end this on a non-medical note, here is link to a video of Charlie showing off his new rock-climbing skills. Nanna and Grandpa (my parents) very kindly gave us the funds to get him an awesome climber/slide thingy for the back yard, because he outgrew the little one he used last year, but isn't ready for a real swingset just yet. He's doing really well with gross motor skills, and is very pleased with his ability to climb up all by himself. http://www.flickr.com/photos/thrawn150/5743975466/
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Dear little boy,

1. I dislike it extremely when someone pries my mouth open, be it you, the dentist, or shadowy figures in dreams. Knock it off.

2. Apropos of which, that Tums I just stuck in my mouth is MINE and you can't have it, no matter how much you think Tums are yummy or how hard you try to retrieve it. You are on Prevacid now, and I am not. MY TUMS CRUNCH CRUNCH CRUNCH
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)

So the morning of the endoscopy, Charlie decided it would be fun to have a temperature of 99 f, so after chatting with the doctor we rescheduled and he got to come home to enjoy his fever, which proceeded to go up to 103 and require stomach-destroying Motrin before the day was done. It went totally away by morning, leaving the destroyed stomach in its wake, along with sleeplessness brought on by taking his Claritin in the evening instead of the morning, the morning medicine-taking interval having been cancelled due to the fasting required by the endoscopy-that-wasn't. Easter weekend with the folks and cousins was, therefore, a little bumpy.  I figure people who see the fresh scratches on my hands and arms will assume that I have a box of feral kittens at home.  

The next fever endoscopy is now scheduled for a week from Friday.

Meanwhile amongst all of the drama and medicine switcheroonism, we forgot to give him his Claritin at all on Saturday, and since he seemed fine we decided to skip it again on Sunday.  Last time we went two days without an antihisthamine he was coughing and miserable pretty rapidly, but so far he is holding steady, so we skipped it again this morning and are going to see if we can carry on like this for a bit.  If he can do without a daily antihistamine, that would be very very nice, because they make him either dopey or ragey or both.

In other news, I cleaned out all of the old expired medicine from our medicine cabinet (AKA the kitchen cupboard over the sink; our collective medicine can't possibly fit in a dinky little medicine cabinet!) and found not one but two bottles of pills that are no longer on the market because of death-causing. Glad neither drug worked well enough for us to consume a whole prescription, I guess...
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Stuff what's been going on with me & mine:

1. Charlie's asthma may be at least partly caused by reflux or esophagitis; ditto the coughing and vomiting. He has been on prevacid for a week and is having an endoscopy on Thursday (argh eek yikes), and is feeling much better from what we can tell so far.

2. Charlie's developmental assessment that we scheduled three months in advance has been rescheduled on us, to sooner, which would be good except instead of being at 9 am it's at 1 pm, AKA naptime. Getting a different appointment=3 more months so we're taking this one. Oh also it's tomorrow, the day before the endoscopy, greeeeeaaaaat. On the plus side we met the doctor in the hall during our (unrelated, but at same facility) GI appointment and I like him so far. With doctors, having a curiosity-provoking kid is convenient--this time we got a free driveby mini assessment.

3. When I get into a "eat healthier" mood one thing I do is eat more beans and less meat. This weekend I had a lovely meal of black beans, salsa, guacamole, sour cream, and chips, and then spent the evening wondering why I felt sick in exactly the way that eating soy makes me feel sick. This is because I am a dumbass, and black beans are a close relative of soy, DUMBASS SELF. So now I am sort of trying to map out the legume family, since I have tested allergic to soy and not-allergic to peanuts, and have not been tested for anything in between. Fun! I guess for now this gives me an excuse to eat more steak.

4. What is up with this business of ceasing to be a baby and becoming a little boy? Noooooooooo!!! IMG_9992
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Charlie was sick last night.  He's sick a couple of times a month in the same way - coughing at bedtime leading to eventually throwing up, and then a restless night with more coughing.  Either it's reflux causing an asthma attack or asthma causing a reflux attack--we hope the stomach specialist can tell us.  Anyway, on nights like this he spends the later part of the night in bed with us, generally preventing us from sleeping by sticking his feet all over us or mushing a twitchy nerve in my back with the end of his short arm.  And there is fussing, and requests for ba-bas (granted), and requests for TV (denied) and then eventually falling asleep finally for an hour or two before it's time to get up.

This morning he was (finally) sleeping next to me and woke up blearily mumbling at me. "Mommy? Choo choo train, Mommy. Choo Choo train."  I agreed that yes, Choo choo train, and he smiled and went back to sleep.

God, I love that kid.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
After months of unhappiness and out-of-control temper events, I believe we have an allergy-skin-stomach-temper management regimen that kinda-sorta works for Charlie. I'm writing up the whole situation here partly to share for those who are interested, and partly to record it for Mary-in-six-months when I need to try yet another new regimen and can't remember what does & doesn't work.
Much information about managing of allergy & eczema )

Bonus photo unrelated to all of this stuff: The banana train
IMG_9537

Puzzling

Feb. 14th, 2011 04:01 pm
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
Oh 2 pm daily asthma attack, where are you coming from? I eat lunch at noon, and I don't have a snack til 3 if I have one at all. Is my 9 pm dose of singulair wearing off right then? Is there a miniature invisible dust storm that passes through on some kind of regular schedule?

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