Wednesday, September 3, 2008

here you go, dr bertoldi, as promised. lol

ok, are you sitting down? you might want to; i'm about to give you quite a shock. something extraordinary happened today.

asher was pale. and sweaty. and refluxing and vomiting. and blue. and short of breath. with low sats, high heart rate.

so dr bertoldi called liz.

who said, "to emerg with him!"

so we went to emerg.

ok, there's the shock o' the day. i didn't like how asher looked, so i took him to paeds and she said, "yeah, he's looked better; i'm calling liz." are you surprised? really? why?

well, we get to emerg, tell them asher's symptoms (and btw, his colour when we got there? pale/pink. no blue. of course). well, apparently, despite the fact that i brought asher in to emerg a month ago with these exact symptoms and they investigated "query failure," and then a week later i took him back in and cardio said "yup, definitely CHF," obviously the problem would be...

yup, you guessed it, his GJ-tube in the wrong spot. of course! that explains everything! sheesh! well, as it turns out, his tube is in the right spot, so that's not the problem. (and for the docs reading this, i am aware that these problems could, in fact, be caused by the tube in the wrong spot. i'm just saying...) ok, so we eliminated that issue. so, if it's not gastro, obviously it's....

a UTI. so, bag him and check his pee. and yup, you guessed it... it's clean. nothing wrong in there.
now, i don't want to be that mom who shows up and says "it's his heart it's his heart it's his heart i won't leave without seeing cardio it's his heart." nope, i don't want to be that mom... again (don't laugh, paranoia is a side-effect of heart parenting, don't you know!) anyhoo... the problem is that we had docs tonight (resident and attending) who don't know asher. now, if it had been a couple other docs, then maybe i could have said, "look, i'm not saying, i'm just saying..." and they wouldn't have rolled their eyes at me. they may even have humoured me and called cardio. but tonight, we had people who don't know us. and apparently, don't know much about HLHS, either.

the nurse we had was quite concerned that asher's sats were 85%. the resident asked me if HLHS is caused by something happening during pregnancy (i wanted to say, "yeah, i conceived. that's what caused it." instead i just said, "no, HLHS just happens" and tried not to hit him. ok, i understand, HLHS is rare so the residents don't know much about it, but still, what freaking difference does it make to his treatment if it's my fault or God's?! i mean, seriously, people? if i said that i had sneezed too hard around the 7-month mark and that caused his left ventricle to fall off, would they have ordered an echo tonight? sheesh!). and um, let's see, ah, yes, the doc said, "yeah, i really don't have any idea why he'd have these symptoms." definitely docs who don't know ash.

ok, this post is sounding a lot more bitter than i feel. sorry about that. i'm really not bitter. maybe frustrated that my boy and i just spent 4.5 hours in emerg so that they could say, "yeah, i don't get it. maybe he's just hot." yeah, i'm tired and i have a headache. and disgusted by how dirty the floors in emerg are. yuck! asher's feet are black! disgusting! not surprising, but gross nonetheless.

anyway, i'm off to medicate my boy and go to sleep. talk to you later! :)


Anonymous said...

You should really right a letter to Dr. Joubert ( head of peds emerge) and he is a cardiolgist ( he is amazing)
Tell him about what happened? the fact that they didn't call card.. He is really good at getting things done...

Jenaia said...

That is awful! Fortunatly I have never had to go to any emerg. because of heart issues. I find the same thing though....they have no idea what I am talking about when I explain the defects. I tell them his sats are normal in the low eighties. They put the probe on see a 93(or something) and they are like..."oh wow they are good today then" and they take it off. Well I am sitting there thinking...."you didn't even get the right number....just wait and see what happens" It is no use though...they have no clue. This is at McMaster. I hope someone will figure Asher out sometime!

ChristophersHeart said...

That's awful! We fortunately have only had one trip to the emerg since Christopher's inital heart failure. Like Jenaia, it was a Mac. And they were mighty confused about his heart defects. Frustrating! They couldn't figure out why we were there. He had an echo and was still dopey and vomited and aspirated a bit so the on call cardiologist wanted him checked out. And even though we gave them his whole CHD history, they still sat us down to inform us his heart was enlarged....ummm, yeah.
I would likely document something or send a letter like Drea said. I would have been so annoyed to have been treated like that.
(hugs) to you and your little darling!