Monday, August 11, 2008

please pray...

we have a busy couple of days ahead of us this week. and that, of course, also means a stressful couple of days ahead of us.

today (monday) is cardiology in london. echo and liz. hopefully that will be it. i don't want to see any cardiologists, though i'm sure we will. asher's not doing so well, what with congestive heart failure (CHF) and all. i think some of the extra fluid is starting to come off, although when i went to bed last night, his head was very puffy and he vomitted after his meds. not good signs, my friends. he has about an extra kg (2.5 lbs) of fluid on board, which is not a good sign.

and just so you know the specifics of what we're facing: i took asher in to see dr b last thursday, but i already wrote some of that visit. you can check out that post later, i think the title has something to do with being desperate to understand medical terminology you have no need to understand (i can't imagine anyone being like that, can you? *wink*). well, she didn't like how he looked. bad colour, vomitting/refluxing, puffy (she made reference to his new "elephant ankles"), shortness of breath. i mentioned that his liver is enlarged and down, and she confirmed it. (FYI: the liver swells and drops because in CHF, the heart swells. this pushes the liver down out of its comfy little nook above the stomach. i'd like to know the long-term effects on the liver of repeated CHF, so if there's any hepatologists or ambitious cardiologists reading this who have the answer, please let me know. post a comment or email/facebook me. i'm serious. you may think i'm joking, but seriously, i need to know.) the liver thing, yeah, kind of a biggie symptom of CHF. ok, what else? oh, yeah. on friday, i took asher back in to see dr b, because now he's irritable. and yes, that's yet another symptom. (are you seeing any trends here?) she looked at him, and his eyes were puffy (or, puffier) and he was really working to breathe. sats are down, though not much (he had been mid- to high-80s for a while, now he's low 80s), and his breathing was wet. none of that is good, folks.

well, she called cardio and talked to liz, who talked to dr hamilton, who talked to dr russell (our toronto cardio). liz called dr b back, and said that we didn't need to come in that day (which was good, since we're going in today), but that "asher should be doing better than this." isn't that a delightful little comment? thanks, liz. ugh. but oh, wait, it gets better. dr b said to me, "has anyone talked to you about transplant yet?" well, to be honest, yes. but it was only when i asked specifically, and it was toronto cardio dr russell, and she said, "likely when he's a teenager." but that was when asher was only a couple months old, and we didn't know about his other issues, and he hadn't yet had all those infections that take a lot out of an already severely wonky heart.

so, yeah. liz isn't happy, the "T" word was spoken (albeit by paeds, not cardio, but you can bet i'll be asking about it now!). and that's our cardio prayer request.

my other request is this: after our appointment today, i'll be paging dr a, the top doc i spoke with last week (see the post called, "ok, i realize that in a perfect world...". why are my titles so long sometimes? ah, well, i'm heather, i talk. get used to it. lol). anyway, i'll be talking with dr a this afternoon about solutions to the whole "i never want to see that particular doctor again, thank-you very much. asher's too fragile, doc's too dangerous" situation. so far, i have this:
  1. try to come in between 3pm and midnight. usually do-able. CHF is slow, but requires attention, so if asher looks bad in the morning, i can wait a couple hours. sometimes.
  2. during the day, i can call ahead to emerg to see who the attending is. if it's this particular doc, i'll call liz and see if we can go straight to clinic instead. that should work, since they're not too keen on that doc dealing with asher, either.
  3. overnight: i pray to God we never need this one, but it's the only thing i can do. call an ambulance. that will send asher to st thomas emerg. they will give him oxygen if he needs it, maybe an IV if needed. then they call london, tell them what's going on, and rush us there (again by ambulance, with full lights and sirens the whole way. how do i know? been there, done that. surprised? why?). and i just have to trust that, if that doc is the attending overnight, that he will have listened to the st thomas doc and the paramedics, since God forbid he listen to me, because what do i know? obviously, nothing.

so, there you have it. the solution i've come up with. i'm going to mention the idea about a big meeting with everyone involved in asher's care, including the suggestion of a few other emerg docs. this is actually good, because some of them aren't aware that asher has "unusual vasculature" (wonky blood vessels) in his lungs. some of them misread that as being hazy or wet, but it's not. it's just that asher's weird. or, "unusual" as liz puts it. i love the idea of this meeting. totally not do-able, but i love it. and a mom can dream, right? hey!!! unless we come up with some sort of sheet to put in asher's chart that outlines all of his conditions and quirks and how they interact (ie, heart trouble and reflux, reflux and throat, infections and t-cell deficiency, t-cell deficiency and transfusions, oh, the list goes on and on). ooh, i like this idea, and it just came to me now! delightful! i have to write this down so i don't forget later! delightful! :)

anyway, so that's my stressful day today. add to that, i have quite a few other things i need to take care of, all requiring rather urgent attention, and none of which is pleasant (like, how can i keep my house? i don't know, but i don't think it's possible for much longer.). anyhoo, that's not asher-related, so i won't burden you with the details here. maybe i'll write about it on My Simple Life later. maybe not. dunno. wait and see. anyway, please pray today, since we're in for a bumpy ride today. thanks so much! :)

4 comments:

Katherine Sweet said...

Heather,
My heart goes out to you.
You and Asher are in my thoughts and prayers today.
~ Katherine Sweet

Tanna said...

Heather...
I pray you get a real good long break from Asher's need for urgent care. I mean...really I heard of the youngest always needing full attention(I'm the youngest, but really...I thinks its time he started thinking out of the box. Remember these boys of ours always need to make things difficult, but they always prevail in the end...
its you I'm a little more concerned about.... if you need anything let me know!

Wendy said...

Hi Heather,

Thinking of you today as you went to this difficult appointment. Hoping you got some good news, or at the very least a plan that you are okay with. Big hugs to you and Asher and if you need anything, I am here.
Wendy

Sherri - KaysvilleMomma said...

What a great blog!! My daughter has DiGeorge and I am just fascinated by reading other people's stories. I just started a new blog linking families dealing with DiGeorge and I would love to add a link to you from there. Please let me know if are ok with it!!! http://vcfsfamilies.blogspot.com

You have a tough little boy!!!