Wednesday, October 15, 2008

So i says to her, i says, “You’re lovely.” But then later, i was confused. (go get a coffee, come back, and settle in. it's a long post.)

Well, today we had to go to SickKids. Honestly, sometimes i love that place. Without them, i wouldn't have Asher. we went today for a sedate echo. Oh, yeah, and immunology. But i'll get to that in a minute. First, cardio.

The echo went well. The chloral hydrate (sedative) kicked in while the nurse was still flushing it down the tube. She said it would take 30-60 minutes for it to take effect. Try 30-60 seconds. I'm not kidding. While she was doing the flush to get all the med in, asher was starting to weave on the bed and his eyes were glassing over and he actually tipped right over. He would have fallen right off the bed if we hadn't been standing right there. Anyway, asher got pretty belligerent, fighting the med for about 20 minutes, but then he just sort of stopped fighting, and within minutes he was hooked up to monitors and the tech had already started the study. I don't think asher even moved the whole time. Then the fellow took some pictures and then the tech took some more. It was thrilling. I read my book (Eat Pray Love by Elizabeth Gilbert, in case you're curious. I'm really liking it. Maybe i identify or something. But i digress.) then they did an ECG. Then we waited for asher to wake up. Yup, we drove to Toronto, arriving shortly after dawn, to sit in a dark room and watch asher sleep. Yup. Nice.

Well, he did wake up, and he was not happy. Belligerent, once again. Notice i'm not saying irritable. That's a cardiac symptom, or something you'd expect from waking a toddler too early from a sound sleep. Nope, belligerent. The dictionary defines "belligerent" as not a happy drunk, one prone to yelling and causing a disturbance and rudely demanding his own way. And he wasn't allowed to walk, because he was so dizzy he was tipping over even when sitting still, and smashing your head on a concrete floor, even when surrounded by medical people, is never a good idea. So, instead, he got strapped down in the stroller and got walked around the cardiac clinic while we waited for Dr Russell.

Well, she came in, sat down and said...

"everything looked good on the echo." Yay!

"if you're happy doing clinic visits in London now, i'm ok with that." Yay!

"i don't see a need for a cath right now. I'll order it for the fall, and then the fontan the following spring." Wha-?!

"how do you feel about that?"

So i says to her, i says, "You're lovely."

That's right, folks, pre-fontan cath next fall, which would be 2009, and then the fontan in the spring, which would be 2010, which is A YEAR AND A HALF AWAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I did mention to her, however, that i'm a bit worried about waiting that long. Not that i want my boy to go in for open heart surgery any time soon, but at least he's strong right now. Wouldn't it be better to do this when he's strong? He doesn't usually do so well in the winter/spring, and that weakens him, so i'm a little concerned about his strength going into the surgery. She agreed that that is a good point and something to consider, but she's still going ahead with next year for the cath. if we need to change those plans, we can. And you know, i'm cool with that. Really, i think i'm just freaked out about post-fontan stuff. Even the arch re-construction, complete with circulatory arrest, doesn't bother me nearly as much as all those potential post-Fontan complications (eg, PLE. Disgusting, and only occurs post-fontan. Basically, it is monster diarrhea that eliminates protein from the body. Nice, eh?). rationally, i know that none of these things might happen, asher may sail through it all with flying colours and not need a new heart for many, many years to come. But still, you know, i'm a mom. I worry.

But, at the end of the day, we don't have a cath for a year, surgery for a year and a half, and we didn't even get a next appointment date before leaving! See? She's lovely. J

Ok, so that's cardio. Delightful. Now on to immunology for our 12:00 appointment.

For which we waited 2 more hours.

In a tiny, tiny waiting room.

That was very busy.

And noisy.

And full of people.

Who stared at my drunken baby.

And doctors who would pop out of their conference room once in a while to make jokes about husbands and wives.

To me.

and ed.


And that was the fun part.

Then they called us in.

While i was down the hall in the ladies' room.

Because that's when they call you.

When you're in the loo.

Ok. enough fragment sentences.

So, we go in and talk to the fellow. Again, we're on the subject of DiGeorge Syndrome. Now, personally, i can see why they'd suspect DiGeorge. On the surface, it looks suspicious. Severe heart, wonky kidneys, t-cell deficiency, feeding difficulties, history of low calcium. But... when you actually look at asher's conditions and compare them to the list of DiGeorge issues, there's some significant differences:

  1. Severe heart, yes, but Asher's heart is hypoplastic, not truncated. So, close, but wrong.
  2. Asher's kidneys are underdeveloped, but not malformed.
  3. Asher's feeding issues are mainly due to vagus and laryngeal nerve damage. Doubtful that it's congenital.
  4. History of low calcium, yes, but not anymore. Now it's too high. The low levels only happened after his diagnosis/hybrid and Glenn.
  5. Asher actually has Chromosome 22q11. (if you're not a geneticist, that will mean nothing to you. So don't worry if you have no idea what i'm talking about here.)
  6. Facial deformities? Um, have you seen asher? I don't think so.
  7. Low IQ? Again, um, have you met asher? I'd wager he's my smartest child. And remember, i have a 6-year-old cardiologist upstairs right now, and another boy who can talk for hours about trains and not repeat a single bit of information. He could write a book, that boy... if only he could write... or hold a pencil, for that matter. But again, i digress.
  8. If, at some point down the road, asher develops a serious mental illness, it will more likely be attributable to a lengthy family history on both sides of his family tree, and not linked to any other congenital issues he has.
The only issue asher seems to have that screams out "DiGeorge! DiGeorge!" (at least to the immunologists in Toronto), is his t-cell deficiency. But, they said, that hasn't really been a huge issue, because most of his infections were viral and not cellular and the only one that concerned them was the sepsis but other than that he's never had severe diaper rash, so it could just be that the control they compared him too was uber-healthy, so that might not be an issue but let's do a bunch of bloodwork that genetics has ordered even though they're not seeing him yet and has anyone discussed VECTOR with you or have you heard about it? He might have anal atresia but that doesn't mean his anus is closed just missing so he could still poop but he's constipated and that fits with anal atresia too even though it might still be patent. (get out your medical dictionary, folks. Look up "atresia." Now look up "patent." You see why i was starting to get confused here.) and something about his vertabrae, has anyone looked at them? And has he ever had a reaction to any vaccines? Wha-? Does anyone see the connection here? If you do, please explain it to me, because i just don't get it.

Ok, i'm admitting here and now, once they started talking about the different infections asher's had and how some are immunology and some don't count, they lost me. i know why. They didn't dumb anything down for me. And that's understandable. A mother comes in and knows a TON about a syndrome her child may not even have, and they're going to assume that that mother knows a lot more stuff. Which i do. Unfortunately, that "a lot more stuff" is not, in fact, immunology, but rather cardiology and cardiovascular surgery. I read up on DiGeorge because of the connection with the heart stuff. (notice that i know the difference between truncated and hypoplastic defects. And then i wonder why people suggest i go to medical school. But i can't. I mean, the only thing i'd be interested in pursuing would be paeds cardio, but i couldn't do that, because then i'd know. I mean, i know that i already know, but then i'd really know, and i just don't want to know, you know?) ok, so doc thinks i know more than i do, so she's not dumbing anything down. And she's differentiating between types of infections. I know viral and bacterial. I know t-cells fight bacterial infections, and play a role in transplant rejection. There you go. That's the extent of my knowledge on immunology. That's it. Oh, no, wait, i lied. Sometimes, people need antibiotics to fight infections. But only bacterial ones. Meds can't help with viruses. And, um... sometimes, you get vaccinated. And some of those vaccines are "live," but i don't know which ones, or what that means, exactly. I have an idea, but if some are live, that means some are not, and if it's not a live vaccine, then how can it be effective? You see? Immunology is not my bag! So why couldn't she just pretend i don't know anything and talk slowly and clearly and monosyllabically? Because, my friends, that would be too easy.

Ok, so then they wanted to send us for bloodwork. And then they didn't. But they might. Nah, it can wait till our genetics appointment. and here's the req, if anyone else wants bloodwork done. but not in london. must be here. but they can wait. and yeah, the tests we've been talking about for the last 5 minutes, that you were starting to understand? Yeah, ignore those for now. We can't do those until he's 2, anyway. So, maybe we'll wait a few months. Besides, genetics will just want more tests done, and those can't be done till he's 2, although they may want them now and you will have to come here not go to London to see genetics there nope gotta come here and we want to test him for DiGeorge even though the last tests we did were negative and we've done the only test we can do but genetics blah blah blah now dad go take your wife out for a nice lunch i'm sure she likes seafood that would be nice see you in a few months here's the NP with your appointment card.

Did all that confuse you? Me, too. 

Wow, this is really long, so i'll stop for now. All in all, a mixed day. Great news from cardio. I can't tell if it was good news from immuno. I'll let you know when i figure that out (or find a doc who can translate for me). In the meantime, have a great rest o' the week, and i'll talk to you later! J


Tanna said...

yay for a good cardio appointment... i refuse to comment on the other stuff...;)
*sigh* i wish I could hear some sort of good news... I feel I'm on a slippery slope of terrible news... but thats for another time..
Yay Asher..!

ChristophersHeart said...

Hey Heather,
I grabbed a coffee like you suggested and caught up. Sounds like cardiology went amazingly well. And immuniology was very confusing!! I don't blame you for being lost...I hope at your next appointment or the one with genetics that you can get some clarification.
But, big hugs on the great cardio news!

Anonymous said...

great news...

Did London tell you when they wanted the fontan???
They told me that they would want it down by the time he ( hunter )is three???
I don't know...
And I agree, doctors need to stick to medicine, and not make comments..