Home!!

Wendy here -  Thought you'd all want to know:   Heather and Asher are coming home today!!   As for the details?   I'll let Heather fill you on those a wee bit later!

I WASN'T EVEN TOLD TO LOOK FOR THESE SYMPTOMS TILL I GOT HERE!!!!

so, last night i asked asher's nurse for some information about arrhythmia. i knew they had pamphlets and booklets about it, but i was "stuck" in his room, so i couldn't go hunting them down. but they love it here when parents ask questions and want information. so... she got me a pamphlet and printed off several pages about it.

and i started reading. and learning. and i think i know what the issue is, but i may be wrong, so i'm not going to say here. it's just a thought at this point... BUT! i learned about symptoms and signs to watch for.

so when asher woke up at 2am and cried, "mommy, i getting dizzy again!" i jumped out of "bed," called the nurse  and ran over to asher. "you're dizzy right now?" "yes." "does this happen a lot?" "yes."

excuse me while i vomit. i had assumed he didn't have any symptoms, because he wasn't telling me anything. and i didn't know what symptoms to watch for or ask about, because i hadn't been told in london. just that "if he crashes at home, there's nothing you can do about it there."

this morning, i asked asher again if he gets dizzy a lot, and he said yes. then i asked if his ears ever feel like they're stuffed with cotton balls. "yes." "honey, does everything go black sometimes when you're awake?" "yes." "a lot?" "yes."

he's been having these symptoms all along, and he never told me, and i didn't know to ask!!! because i wasn't given any information about this.

so please pray/cross your crossables/send good vibes for asher. so far today, he hasn't had any symptoms, his HR is closer to normal, and i haven't seen the weird rhythm. but it's only 3:00 in the afternoon now, so who knows what he'll do later...

i'm scared out of my mind now. his nurse last night came in often to check on him, because she could see at the front desk that his HR was getting low (they turn off the monitors in the rooms so everyone can sleep, and send the signal to the nurses' station). asher's heart rate kept dropping - and sitting! - in the low 40s all night. and kept doing the weird rhythm. her words? "yeah, this is pretty scary." and when a cardiac nurse, who has seen it all, says this is scary...

i just want to cry.

and i can breathe again :)

well, here we are in toronto. we got here shortly after lunch today, and let me tell you, within minutes of arriving, i was feeling better.

once we got settled in a bit, dr russell (whom i adore!) came in to see us. and you should know that, while she and i spoke, she was turned to face his monitor the whole time... the monitor which was showing his heart rate in the high 50s. and doing the beat beat pause thing. yeah.

dr r filled me in on their view of things: at this time, they don't think asher needs to be paced, but they're going to monitor him for a few days, see how he does and figure out exactly what's going on, run some tests, that sort of thing. but we're definitely here for more than a couple days. she used the phrases "over the weekend" and "hopefully you'll be home by the first of april." honestly, i'm not looking forward to another loooong admission (we're already at the end of day 8), but they're going to take this time to come up with a good plan which will address all of asher's new little quirks.

and this is all absolutely wonderful, if you ask me!

and i already have a pile of information about arrhythmia and such in asher's room as i type this, and i'm going to read through it tonight. surprised?

oh! and you might like to know (at least those of you who will understand this tidbit), that asher's sats this afternoon/evening were - sit down before you read this - 96 to 98%!!!!!!!!!!!!!!!!!!!!!!!!!! for those of you who don't understand that... THAT'S NORMAL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! mind you, his HR is still in the 50s, but at least his sats are spectacular!!! dr caldarone, i think i love you!!!

TRANSFER!!

Wendy here:   Heather just told me that they will be transferred tomorrow at 10am via Voyageur Transport.   A huge sense of relief - only a few more hours until Asher is in the care of Sick Kids and the cardiologists and surgeons who know him best.   Thoughts and prayers that it's a smooth transfer and they get settled in quickly tomorrow.

Update

Hi all - Wendy here updating for Heather:   After yesterday's upsetting news in regards to Asher's care, there are some positive changes on the horizon.    Heather, being the amazing advocate that she is for Asher, sent out a text message that she is asking for a transfer to Sick Kids.   I don't have specifics, she indicated it was a very long "gothic type horror story." I do know that Liz (the NP) has been on the phone to Sick Kids arranging the transfer.   I also know that Sick Kids has ordered a fat free diet for Asher because he's showing all the signs of chylo and a fat free diet is the treatment.   Heather's response "this feels better already".

As of now I do not know when Asher will be transferred or how.   When I hear, I'll update again.   Keep them in your thoughts and prayers please that this happens very soon and that Sick Kids gets to the bottom of Asher's rhythm issues and grey colour.

Wendy

Speechless

Wendy here :   This is the update I got from Heather this afternoon -  Sick Kids had their conference and discussed Asher.   They decided "no pacemaker", they decided to stop his Carvedilol under the assumption that it could now be causing his rhythm issues, low heart rate.   And that Asher can go home once he drains less than 60mls/hr.   As you can only imagine Heather is very unhappy with this news.    Nobody can explain why Asher is grey - Liz offered the explaination of "poor lighting" and "low hemoglobin...but not low enough that we'd treat it".   And they are still not treating the Chylo....it's running out like milk, over 1100ccs so far since admission.   Tests are negative but given the treatment is a fat free diet, one would think it would be worth trying.   They offered some thoughts about "residual stuff draining out that looks like chylo but isn't".

Dr. R and Dr. C were called/emailed today (cardiologist and surgeon) and there's hope that they were busy today and didn't receive the messages or participate in the conference and perhaps they will feel differently about Asher's course of treatment.

I'll stop now because I don't want to rant all over Heather's blog, but know that Heather is not happy with this plan, and I am sure Heather will fight to get Asher what he needs.

To finish with a bit of good news - Asher won the toy draw and got a great Leap Frog toy that he's happily playing with.   He's such a trooper, still happily playing with so much going on.   Love that sweet boy!

Prayers urgently needed!!!

Wendy here - Heather asked me to update:   Things with Asher are pretty scary right now, his sats are, ironically, "fine", his BP is "ok" but his heart rate is very low - it's gone as low as the 40's, sitting in the 60's but it has a very wonky, dangerous rhythm going on.   And sweet Asher's overall colouring is not good.   He's a dark grey which is really scary (heart moms know exactly what we're talking about here). He's still showing signs of chylo (looks like straight milk coming out of his tube).   Tomorrow the team at Sick Kids meets to discuss what to do for Asher - Heather is praying that they decide to go forward with the pacemaker.   This is a very scary time for them and the waiting and wondering is very difficult.   Please pray/positive thoughts/vibes for Heather and Asher tonight to stay strong and also for the doctors to decide to get Asher over to Sick Kids without delay and to determine what is needed to help Asher get back to his sweet, playful self as soon as possible.