Friday, October 31, 2008
Thursday, October 30, 2008
"MOM! MOMMA! MOM! oink-a-ink... kees... ka-oink... kees... kees?" (translation: oink oink, please, oinkoink, please. please?)
so i gave it to him, and he said...
"ah-come. oink oink..[turns toy around to see cow] moomoo... mooooo."
yeah, he says "you're welcome" instead of "thank-you." he'll figure it out eventually. i think bram did the same thing, so i'm not worried.
now i'm off to do dishes. oh joy, oh bliss.
Wednesday, October 29, 2008
I worked out this afternoon instead of posting. And as i worked on my glutes and pecs and biceps (which now have some nice definition, by the way J), i pondered weakness. But that's a post on another blog... which will hopefully be ready in the next couple of days. (cut me some slack, here, people! I'm a single mom with 3 kids, one of whom has his own blog, i haven't been sleeping lately – arg, hypomania – and i'm working on figuring out my life at the moment... but i digress...)
Ok, so, Asher. This is his blog, after all. Focus, heather, focus....
Here we go...
Monday in London. Right.
Ok, we started in cardio. That went nicely. No tests. Yay! Asher's had enough tests lately, i think. And we didn't even see a doc!
Ok, i lied. I spied one wandering about the clinic. Dr Weslisch. She looks nice, and she kept eyeing Asher, but we didn't speak. I'm assuming that will happen soon enough, in emerg. The winter, it is a-coming. Anyhoo...
We only talked to liz yesterday. Your basic check-up. Sats were 85% (i know, i'm ecstatic, too!), BP was 109/43. Why do i remember these numbers? I don't know. Not like any of us needs to know the specifics, unless you're a cardio who used to follow my boy and you're curious... i didn't catch the pulse. Liz cleared it all before i got to that part. I don't think liz wants the parents to know that stuff. And why should we, really? But i have learned... sometimes, you need to know. So it's best to know as many of those numbers as possible. Even if you don't know what they mean. Although,by now, much to many a cardio's chagrin, i know what they mean. Yikes! Wow, i'm tired, i'm babbling. Ok, i'll just finish this off and go to bed...
So, the appointment was left like this: we go back in January for an echo. That will be six months since his last echo (in London, anyway), and then we're aiming for july. But did you catch that? We get to go 2 months between cardio appointments! We haven't gone that long since, what? February, i think. It's been a long time, anyway. So that's cardio.
Of course, this plan is ignoring the fact that we're at the end of October, and the fall is upon us, with winter following close behind. And we all know that Asher doesn't tend to do so well in the winter. Stupid wonky immune system. (and yes, i'm still confused over immuno. I mean, really, does anyone out there understand it?! Seriously! I don't even know where to start looking for info, that's how confused i am! Arg. Ok, enough of the rant... on to the rest of the day...)
So, after cardio, Asher and i had coffee with tanna, because yale was still in the unit and Asher can't go in for a visit. But tanna came out. Yale's doing better, though he's on his way now to Toronto for a work-up for a transplant. Let's hope it all goes quickly, and he can get listed, and his wait won't be too terribly long. Check his blog for details. The link's on the sidebar.
Then, off to Interventional Radiology. Asher's tube had started leaking on the weekend, but i thought it was the syringes on Saturday. Then i checked it to be sure, and nope, it's coming out of the tube itself. So, it had to be replaced. Even the doctor didn't want to do it. She was the one who had replaced it the last time... which, you'll remember, was last Tuesday. But they check, and the tube was actually cracked. There was a quite a split there. So, it had to be replaced. That was exhausting. But, Asher's getting all his formula and meds again, so that's good. I guess when you look at the big picture, it's not so terrible... well, for me it isn't. But then, i wasn't pinned down on the table under a GIANT x-ray machine while people in masks and lead stuck a tube in my small bowel. It's the one thing Asher can't stand. Tube changes. He hates them.
So, that was our day. First good, then not so much. And of course, all day, Asher didn't stop. He walked from Tim Horton's to IR, and then ran all over the place for 45 minutes in the waiting area and surrounding hallways. I think he missed the memo that said, "half a heart. Should get tired." Is there a doctor out there who can talk to him for me? Just explain the whole concept of rest for the heart kid. Because, yeah, he doesn't get it. Timmy's to IR is a long walk. Uphill. And he did it without complaining. In fact, he made it up that hill faster than tanna and me, and we have two ventricles! What's up with that?! Sheesh! Lol
So there you go. Maybe i'll edit this in the morning, but i'm too tired for that right now, so i'm going to bed. Talk to you later! J
Saturday, October 25, 2008
EUREKA!!!! Oh, dr bertoldi, you’re gonna be impressed, i think! Lol (the rest of you don’t have to read this if you don’t want to. It’s about poop.)
Ok, for those of you who've been privy to my "i was so lost in immunology" rants over the last week and a half (honestly, i have never been more lost in an appointment as i was then! I mean, seriously! Does anyone understand immunology?! Because i'd like to talk to you if if you do! I have questions!), you may remember my confusion over the gastro issue that was discussed. The question of whether Asher is constipated because of nerve damage, as we (esp I) suspect, or if it's something congenital. Immuno's guess was anal atresia that's patent. I think i wrote about it last week. how can you have anal atresia that's patent, i asked. (for those who aren't versed in medi-speak, "atresia" means closed and "patent" means open. So now you understand my confusion!)
well, in my cyber-wanderings tonight, i decided to look up VACTERL (not VECTOR, as i had called it previously. Doc had an accent so i misunderstood). I went to Children's Hospital of Philadelphia (wonderful website, very good information), because that's where i learned about DiGeorge, so i thought i'd at least start there. So i searched "VACTERL." A few things came up, so i went through them. The first link just talked about causes of CHD, and included some info about a few syndromes and genetic abnormalities that contribute to CHD. DiGeorge is one of them. But they also said that some "associations" are linked to CHD. Like VACTERL, which includes Vertebral, Anal, Cardiac, Tracheal, Esophageal, Renal and Limb abnormalities. You'll notice that Asher's limbs and spine are fine, but the rest... yeah. I'm not saying he's got this VACTERL thing, but maybe it's worth pursuing, even if just to rule it out...
ok, so here's the "eureka" part of this story...
here's the gist: there are several kinds of anal abnormalities. the first is anal narrowing, which basically means that it's technically intact, but it's narrow, so BM's are difficult, but possible. But every so often, they have to dilate it, to help things go a little easier. Yup, a balloon in the bum. Hello! L another abnormality is a membrane over the anus, so nothing can get out. Eep! and then, there's the whole anal atresia thing. Basically, the rectum and the anus are not connected. This can present one of two ways. First, they could be unattached, but there's a fistula, or abnormal channel going from the rectum to the outside, so poop can get out. Phew! Yucky, but lucky. Or, they're completely disconnected, and there's no fistula. Still yucky, but not so lucky. On the other hand, according to my medical dictionary, when it comes to fistulas, "surgical repair is not always possible." The above link explains the repairs in detail.
What does any of this have to do with Asher, you ask? Well, gentle (and by now, grossed out) reader, allow me to explain further. (and feel free to stop reading now. It's all about poop and bacteria and so forth, and my own opinion, albeit humble and uneducated, on Asher's gastro condition.) ok, here we go.
so, in the case of Anal Atresia, which, for the sake of this blog post, we'll assume asher has, there is sometimes a fistula present. Now, this fistula may not necessarily be a straight tube going straight out. Remember, this is an abnormality in an already wonky physiology, so why would it be so straightforward as that? And remember, too, that the gastro and urinary tracts are smooshed together pretty snugly in there. Not much for wiggle room. Sometimes these fistulae (that's the plural. Don't i look smart?! Lol) kind of connect with the urinary tract. Poop still gets out, and mostly through the bum, but not through the anus, and having taken a slight detour first.
Are you getting this? Alright, poop still gets out, but may sort of collide first with the urinary tract.
In which Asher has had numerous infections.
But not from any reflux in the urinary tract.
Nope. They've done tests, and that's not it. His pee goes the right way, just as it should. It doesn't go shooting back up toward the kidneys.
But what if, and think about this, what if bacteria are getting in there from another tract altogether?
"but, heather," you might ask, "wouldn't that mean he'd have poop bacteria in his urinary tract?"
Yes. Quite possibly. It would.
One example of a poop bug: e. Coli.
Can you imagine having e. Coli in your urinary tract? It's possible for girls. Just wipe the wrong way, and voila! But for boys... not so easy.
Asher has had e. Coli in his urinary tract.
At least once.
I'm not saying, i'm just saying.
Ok, now, i know paeds reads this. So, just think about it. that's all i ask. oh, and then let me know what you think. K? Thanks! :)
so, tonight, as i was making supper, the kids were all in the kitchen, playing with each other. and playing nicely! it is lovely to hear them all play, including the way they include asher in the play. it was heartwarming. so, i thought i would share it with you.
now, there's a bit of a story behind this next pic.
back in the spring, during one of our many visits to london cardio, i was chatting with a certain cardiologist from mexico. he noticed that asher was not particularly fond of sharing the thomas trains with other kids, and refused to come when called. one of us said that asher's spoiled, to which i replied, "but how do you discipline a kid who'll have a heart attack if he cries too hard?!" i expected the usual, "mom, you're paranoid." instead i got, "yeah, that's a problem." wha-?! well, this pic is for you, buffo, and for anyone else who thinks asher gets away with murder.
this was time-out number one tonight. he got another one a couple minutes later when he refused to make things right with nana. apparently, she had asked him to do something, which he refused to do. and by "refused" i mean that he yelled "NO!" repeatedly, then grabbed something of hers off the table and threw it across the room. yeah, time out for asher. and after the time out, after apologizing, he was asked repeatedly to pick up whatever it was and put it back, to which he replied "NO!" so... time out #2!
of course, now he's sitting blithely at the table in his high chair, singing Bob the Builder ("Bah Bih hahadooha kakaka!," roughly translated, but it's the exact rhythm, key, notes, everything!) and waiting for pizza. not that he'll eat any, all you medi-types reading this, but still... he's waiting for supper. the only person who can't eat is the only person at the table. ironic, n'est-ce pas? lol
btw, i didn't end up taking asher in to emerg yet. i decided to let him sleep overnight, which he did for the most part. right now i'm just keeping a close eye on him, but he'll be seeing someone medical in the next few days about those ears, rest assured.
anyway, have a great weekend, everyone! :)
Thursday, October 23, 2008
Monday, October 20, 2008
I had a thought yesterday when walking home... about how you feel a little bit of guilt when giving into Asher's wanting to eat... I was thinking there IS going to be a point when he will no longer need the tube right? and sure its dangerous for him to drink and eat...but how is he ever going to learn if you don't give him the experience.... You're a great mom!you know, this little wall post really helped. what an encouragement on an otherwise horrid day. so, thank-you, T, for being such a great friend. and if you need anything, just let me know. i'm not far if you need me...
Some of you may recall that the other week, Asher had his first ear infection. Also at the time, he had his first tube infection of the season. Oh, yeah, delightful. You may also recall that he was prescribed a course of Keflex, an antibiotic used to treat ear and tube infections.
Ok, so, funny story: we're in immunology on Wednesday, talking with the fellow. I had already told her about the ear infection the week before. Well, later in our uber-confusing appointment, she was assessing him, including checking his ears. She said, "so, the infection was in the left ear." I said, "no, right." She said, "no, left." I said, "no, it was in the right." "well," said she, "his left ear is pink now." Ok, so the story's not so funny. Not at all, actually. Anyway...
I've been keeping an eye on Asher over the last few days, checking for signs that the infection was getting worse. I've also been keeping an eye on his tube site, because, despite a week of antibiotics, the infection had not, in fact, cleared up. And when we checked it out yesterday, it was, in fact, worse. I'm sure you can guess where i'm going with this.
Or rather, where i went this. And with Asher.
That's right, we went to emerg. But i decided to take him in to London today, instead of St Thomas. For one thing, they know Asher better in London, and since i have no ink for my printer at the moment, i don't have a sheet listing all of Asher's issues and quirks. And, i figure, this is exactly what happened with Asher's tube back in January, and they handled that in London. So, i figure, we'll go there today.
We were there all day. It turns out that both of Asher's ears are infected now, although the left is worse than the right. Also, the tube... yuck!!!! It is the yuckiest, ooziest, crustiest, reddest, smelliest, most disgusting tube site i have seen in a very long time. Disgusting. So they swabbed it and sent it off for a culture.
And that took hours.
So, literally, we had to sit around in emerg, waiting, for about, oh, 5 hours or so.
Ok, the waiting isn't so shocking. But i was not expecting the swab/culture route. I thought they'd look at it, smell it, write a prescription, and send us blithely on our way. But, of course, that would have been too easy. Especially considering i hadn't eaten breakfast before going, so i was starving. Ah, well, at least i got to read some 8-month-old fashion magazines while we were there. And Asher watched Thomas and Wiggles DVDs. Which meant that i got to watch them, too. That was a fate worse than death cruel and unusual thrilling, let me tell you.
Anyway, they got the culture back, and it's the same bug he had on his tube back in January. So, they prescribed the same antibiotic: Cipro through the tube, and Fucidin on the tube site. And then they sent us blithely (and hungrily) on our way.
Well, we got home, hooked up his feed once more, and all was working well. Then, it was med time. So we gave him his Cipro. Or rather, we gave him part of his Cipro. You see, the tube f***ing clogged half-way through the dose!!!! Are you kidding me?! I can hear you say. Oh, my friend, i wish i were, believe me. And it's not just clogged, it's PLUGGED!! Nothing is getting through there right now.
well, i did the usual de-clogging routine. Water in a small syringe. Nope. So, saline in a small syringe. Nope.
Saline with a smaller syringe (increase the pressure). Nope. It's plugged. Fantastic.
So i just talked to the Interventional Radiology nurse-on-call, and, as it turns out, they can't get any staff in tonight. Which means that we have to wait. Until 8:00 tomorrow morning!!!! Which means, you'll note, that Asher will be without food until about 9:00 tomorrow morning. After getting about 1 hour of his feed since noon today. And Asher gets nothing by mouth.
now, i know there's doctors reading this, and i'm sorry if you're offended. I'm tired, i'm stressed, and i'm ticked off that we just spent all day in emerg and then we have to turn around and go right back... first thing in the morning. Arg. So please don't take my bitterness personally. But seriously!!!!
I think i need to stop this post now before i get really ticked off. I need some coffee. From my happy place. I'll be back. Toodles! J
Sunday, October 19, 2008
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 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.
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:
- Severe heart, yes, but Asher's heart is hypoplastic, not truncated. So, close, but wrong.
- Asher's kidneys are underdeveloped, but not malformed.
- Asher's feeding issues are mainly due to vagus and laryngeal nerve damage. Doubtful that it's congenital.
- History of low calcium, yes, but not anymore. Now it's too high. The low levels only happened after his diagnosis/hybrid and Glenn.
- 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.)
- Facial deformities? Um, have you seen asher? I don't think so.
- 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.
- 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.
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
Thursday, October 9, 2008
i'm writing to let you know that edwin and i have now separated permanently and will be getting a divorce. this has been a long, painful and sorrowful journey for each of us, but in the end, we are parting amicably and peacefully.
we still care for each other deeply, and will be supportive to each other for the rest of our lives. we continue to be best of friends. but we also now realize that we make better friends than spouses.
in all of this, the children are doing well.
there is now, at long last, peace between us, and this will help the children.
i really appreciate your prayers and support during this difficult time, and would ask that you continue to pray for us, as the road ahead during the next while will be stressful for all of us.
thank-you so much for your understanding. if you wish to talk, please feel free to contact me.
Wednesday, October 8, 2008
Sunday, October 5, 2008
anyhoo... asher talks. a lot. like, all day. non-stop. suddenly, i'm the quiet one in the house! stop laughing, it's true. you doubt? allow me to illustrate:
today, i was getting asher dressed for his appointment with dr b (asher's fine, just an ear infection - another first in the family! - and that's causing his heart to work harder than usual, which is causing all the cardiac-looking symptoms). i went to put on his socks. i put on the first one. no biggie. then he picked up the second one.
me: where does that go?
asher: sock... toes.
look at that, folks! an (almost) sentence! how do you like them apples, eh?! :)
Thursday, October 2, 2008
Wednesday, October 1, 2008
so i took him in to see dr bertoldi today, who checked his sats. 87%! (i'm loving post-Coles! it would seem as though asher likes having blood flow to and from his lungs) everything else seemed fine. even his liver was, to doc's surprise, right where it's supposed to be. imagine that, a liver tucked up in its own little nook, as though that's where it should be or something. she also checked his ears. his right ear is not red, per se. it's more along the lines of pink-ish. so basically, i'm to keep an eye on him and if he needs to be seen, he needs to be seen. sheesh! it's like she thinks i keep him away from doctors as much as possible, waiting as long as i can stand it to take him in. now, where would she get that idea, i wonder... lol
here's what you need to take away from this post: no meds, no call to liz, no trip to emerg. delightful! here's hoping dr b remembers this next time we're in, and we can repeat this. no more "yeah, i'm calling liz." (hint hint) ;)