Tuesday, April 8, 2008

so much happened this afternoon already, and it's only 3:00

so, i popped into the paediatrician's office this afternoon to pick up a form from her. turns out, the government will re-imburse us for the 20% of asher's formula that we've had to pay ourselves, and they'll cover it all from here on out. that's a relief, because regular price is about $30 for 12 cans for formula, and he gets more than 3 cans every day. so that's over $60 a week, just for asher. to put that into context, our grocery bill is about $90 a week for the rest of us. yikes!

thank God, right now ed's benefits cover 80% of the cost of the formula. but it's very unusual for benefits to cover formula for tube feeds. so the government has created this program within ODSP (Ontario Disability Support Program) to cover those costs. hey, you know what i like? social medicine. thank-you, Tommy Douglas! lol anyway, hopefully soon we'll get a cheque to re-imburse us, and all his formula will be covered from now on. this would be much welcomed, as you can imagine. yup, left-leaning governments are good sometimes! lol

on a different note... the cath lab at SickKids called this afternoon with a date. asher's booked into the cath lab on friday april 18th. yikes! that's a week and a half away! i asked to be put on the cancellation list, and told her how he's doing (blue, sats around 70%, tired and short of breath, puffier every day). but that's the soonest we can get in. one good thing, though: it will be dr benson doing the cath. we like him. he's the one who has done all of asher's stents so he knows asher's heart well. also, in his spare time (lol) he builds ships in bottles. that's the guy i want poking around in my son's heart, thank-you very much! both require precise work from far away (for the cath, they go in through the veins in the groin - femoral veins, for those medical types - and travel up and into the heart; not much room for error) and extreme focus. so that's good news. the pre-cath clinic will be the 17th, at 8am, and we'll just spend the night in hamilton so we don't have to drive so much. (oh, yeah, um, mom & dad, can we crash at your place that night? thanks! lol)

on the other hand, it's not till the 18th, and then they'll book the surgery. this is not so good. asher's deteriorating every day, he's not getting any better, just worse.

when i was at the paed's office this afternoon, i chatted with her for a couple minutes. told her how asher's doing, and that (at that point) we didn't have even a cath date yet, let alone surgery! she was concerned about this. she's seen asher recently, and believes me when i tell her about his condition today. she wants to call the surgeon and talk to him, see if we can speed things up a bit. don't know if she'll succeed, but it's worth a try. not that i am looking forward to open heart surgery, but it has to be done soon, and i don't know how long asher can continue like this. we'll see what happens there.

in related news... she didn't get a chance last week to talk to dietary or GI, so that's somewhat of a relief. i did tell her, though, that i have stopped diluting asher's formula now, so he's getting the full 30 cals. hopefully that will help his weight issues. and i said that, not that i'm itching for the gastro surgery, but i am really concerned about the aspiration thing. i mean, i know that the heart is affecting the reflux, and once we "fix" the heart stuff, it'll help the reflux, so the heart should be the priority. on the other hand, if there's a big reflux and he aspirates it, it could drown him without warning, so i'd like to prevent that from happening, so maybe that should be the priority. rationally, i know heart comes first, but my fear says "REFLUX IS FASTER!!! FIX IT FIRST!!!!" realistically, heart will come first, then gastro, but still....

as for other kids... we just heard about a family in toronto right now. the father works at sterling or something around here, and he's laid off right now. they can't make their mortgage payment, but they're in toronto waiting for a new heart. their son will be getting a Berlin Heart soon ("Ventricular Assist Device" - does what it says - it's a device that assists the ventricles lol - it pumps for the heart) until a heart is available. unfortunately, i don't know their names or anything, so i can't pass that on to you. but God knows who they are. so if you could pray for them in the next while that would be great. also, little dominic will be getting a date for his fontan in the next week or so. please pray for the parents (my FB friend Jenaia and hubby) because this wait is excrutiatingly stressful. and pray that dominic will do well with the surgery when the time comes. he's hypoplastic right heart and otherwise doing well enough, but still, he'll be going in for open heart surgery in the next few months. hey! maybe we'll be there at the same time, and i'll actually get to meet jenaia! how cool would that be! i'd prefer to meet under other circumstances, not in CCCU after OH surgery, but hey, whatever! this is the life God has given both our families, so best to roll with it, eh? :) also, little atticus (out in edmonton) is doing wonderfully. he's HLHS, post-Fontan, post-transplant. his feeding tube is gone, he's eating and taking all 30 (!) meds orally, he turns 3 later this week, and he's re-learning how to walk. the very fact that he's alive is a miracle, but now he's home and doing so well.... thank God, miracles happen! :)

anyway, that's our world at the moment. keep praying for asher and the other heart kids right now. pray for 24-hour timmie's, sanity (those 2 go together, let me tell you! lol), the docs, the kids, the families and siblings, and yourselves, as you read this, that God will grant you patience and peace and trust during times of stress, whatever your stress may be. thanks for reading. talk to you later! :) h

1 comment:

Gayle Heywood said...

You know that you don't need to ask if you can stay at our house next week. Of course, you can. And just leave Blithe and Bram here. We'll spend some fun time together here. Blithe hasn't stayed with us in a while.
See you on Friday.
Love, Mom