Tuesday, February 3, 2009

How have i not posted about all this yet?!

It would seem i've been somewhat remiss the last couple weeks, not posting the latest news in Asherland. So, my apologies. And now i'll attempt to make up for it.

As you may or may not recall, Asher was admitted the other week to SickKids for the weekend for some good old-fashioned observation. They saw him desatting to the 50s and 60s, high blood pressures (and by high, I mean, higher than mine!), and his heart rate jumping up at the slightest activity. and just so we're clear about this "jumping up" comment, let me give you a couple examples:

  • He sat up in his crib, and his HR jumped to 140. When he sat up. Yeah.
  • He walked around his room for 5 minutes. 150. And short of breath.
  • He walked around the ward for 10 minutes. 170. And desat to 59%.
  • He took 10 steps across the play room. 155. Sats in the mid-60s all afternoon.

Ok, i realize that those numbers don't mean much to most of my readers, but that's ok. You heart moms and docs all know what i'm talking about (oh, please, Pepy, don't read this post. LOL). For those of you unschooled in the basics of Paediatric Cardiology, i'll say this: those numbers? Yeah. Not good. Asher simply should not be doing this at this stage. Or ever, in my opinion, but what do i know? Well, other than knowing that oxygen is good, and heart attacks are bad. (ok, fine, Wendy, i know a lot. Sheesh! i can hear you protesting from here! LOL)

When we were discharged from SickKids on the Monday, we were sent home with a Holter. Gosh, i love those. <rolls eyes> i understand that they're necessary and help detect rhythm issues and that sort of thing, but let me tell, it was not invented by a heart parent. Ah, well, i guess if it helps them to figure out what's going on in Asher's heart, it's a good thing. I guess. LOL

The other thing is the cath. Asher is scheduled for a cath on Wednesday morning. Don't know what they'll do for this? Well, let me tell you: they're going to be checking pressures and that sort of thing inside asher's heart and vessels in the area around his heart and lungs. How do they do that? Well, for starters, they will be inserting a long tube through a vein in his groin/hip area (the femoral vein) and traveling up that vein and into his heart, where they will be injecting dye into his heart and using that to look around. Inside his heart. Blech. They will also at this point check his pulmonary veins, those vessels that bring red (oxygenated) blood from the lungs to the atrium (left atrium in us, common atrium in Glenn kids). Once they've checked that stuff, they will remove the tube from his groin, and put another one into a major vein (the jugular, i believe, but don't quote me) in his neck. They will then travel down that vein and into his pulmonary artery branches (the vessels that take blood from his head, neck and upper body into the lungs. Blood from his lower body doesn't go the lungs yet). They will be looking around and checking the pressures in the PAs tomorrow, as well, knowing that the pressures were high in May after his surgery, and that Asher is very fond of scar tissue, and he has some lovely patches in there thanks to Dr Caldarone.

Needless to say, Wednesday is going to be a rather freaxious day. I'm not really looking forward to hearing what they find. You all know i have my theories. But to be honest, i don't know what i'm hoping for. I think i'm hoping that they'll find something wrong, because then they can fix it and Asher will improve. And if they don't find anything, then what is causing all these symptoms?!

So that's heart stuff. I will post results of the cath as soon as i can.

In other Asher stuff... we have nephro (kidneys) clinic this morning. Ultrasound, bloodwork and doc. And how much do i love our nephrologist?! Lovely, lovely man. Very nice. I don't think we'll be getting any real news today. The HCTZ has been helping to lower asher's blood pressure and reduce the calcium build-up in the kidneys, so i don't think that will be too much of a concern today. Calcium in the kidneys is not a good thing. And asher had quite a bit of it at one point, but in a delightful, non-Asher-esque development, it has been getting better over the last year or so, and i can't imagine that anything there has changed.

Let me see... anything else to report?... ah, yes. Got a call from genetics in Toronto the other day, and we have an appointment scheduled for April. I don't know too much what to expect, although i know i will be receiving a form in the mail in the next little while which will ask all about Asher's family history. That should be interesting. I'm (almost-ish) looking forward to this appointment, i think. I would like one of two things: either we will get some answers, or they will see that HLHS and his other issues have just "happened" and then they'll leave us be. (and yes, i know... the odds of a hospital leaving us alone would be a miracle, but a mom can dream, no?)

So, there you have it. The low-down on Asher's medical stuff right now. I'll post again when i have some more info for you. Meantime, please pray for my boy, and for us all. Thanks so much. Talk to you later! J

2 comments:

ChristophersHeart said...

You really shouldn't under estimate yourself, honestly. If you weren't swamped with your own crazy busy life I swear I'd be having you phone conference in for our Cardio appointments just so that I get answers instead of vague statements.

Good luck Wednesday with the Cath. Give Asher a big squeeze from all of us. I am hoping you get a reason for the desats and tachycardia spells...but a reason that comes with a simple fix. Update when you can and if you need anything, you know where to find me.

Thinking of you
<3
Wen

Jamie said...

I just want to let you know that Asher & you are in our thoughts and prayers. I hope things start to turn around for him soon and that you get some answers.

Jamie