Monday, April 5, 2010

getting you all caught up...

sorry for the lack of post yesterday... i was simply too exhausted to write. this weekend has been one of the longest few "daze" i have ever experienced in asher's life. sigh...

as i posted on saturday, asher's heart rate while sleeping dips. and dips very low. but only for a minute or so at a time... while he naps. apparently, when he sleeps overnight, however...

it gets down to 30...

and stays there...

for 5 minutes or more... until he's roused.

which is exceedingly difficult to do. after one episode on saturday night, his nurse turned on all the lights, turned on the TV - loud - changed his diaper, washed his face, and sat him up... and then he woke up. for about 5 seconds.

and then he crashed again.

and when his HR is down, he is grey. and i don't mean slightly dusky. no. i mean, grey. think charcoal. yeah.

i'll admit, i was terrified after the first episode. so i called a friend (and really, i just bawled when he answered the phone; i could barely speak at that point), so he raced over and stayed here with me for a couple hours. it helped get me through the fear... only for a few hours, but it's better than nothing.

during one of the episodes on saturday, asher was very dark grey. so much so, in fact, that the nurse got scared. she called in the resident, who also got scared, and ordered that atropine be kept on asher's bedside table, just in case. not only does everyone here now know that asher needs a pacemaker, the PCCU docs (and cardio) don't even want him here anymore. i heard the resident say, "get him out of here. just send him to toronto now." excuse me while i vomit.

k, back.

yesterday morning, i went to church. i figured the break and change of scenery would help. oh, yeah, great idea. i stayed for the first song, and then i ran out to the atrium, sat down at a table, and cried. and then it was like a cloud of compassion settled over the church. a nice man (whom i'd never met before) came over, and said, "i'm not trying to be nosey here, but... you wanna talk?" so i told him what was going on, and he went and got the pastor's wife, who came right out, sat down with me, hugged me, listened to the story (she knows about asher), and got me a fresh cup of coffee and piece of banana bread (that's right, my church has a coffee/snack bar... i love my church. lol) and prayed with me. we talked at length about everything going on right now. and i cried. and cried. and cried.

then a friend and i went out for lunch, where we bumped into a couple of friends, so we sat with them and talked and laughed and had a great time. a refreshing time. a fun time.

when i got back to the hospital, the kids were there, so i cuddled with them for a little bit... until i dozed off. yeah, i was exhausted! asher was overjoyed to see them, and he played so nicely with them. it was wonderful to see them all so happy together. (blithe and bram have now gone back to hamilton to stay with my parents. hopefully they can go back to school there while asher's in the hospital.)

my friend and i were invited out for a barbeque last night, so i went and again had a wonderful time, and by the time we left, i was very tired, but only physically. i was restored last night, and it was amazing. this is the good thing about PCCU: with a nurse at the bedside constantly, i can leave when i need to, and know that asher is still being very well taken care of.

overnight, i slept. i fell asleep at midnight, and didn't wake up till after 8:30 this morning. gee, think i was tired? lol but this morning, i feel better. much more functional, and able to continue and support asher the way he needs me to.

rounds this morning was interesting. apparently, asher didn't have a super-spell last night, just a couple times when he went down to the low 40s, so that's reassuring. (how funny, to think of a 3-year old with a HR in the low 40s as "good.") but all night, and still this morning, he is very sweaty (and he usually isn't a sweaty kid, so this is alarming) and slightly dusky. i can see it, and his paed would see it, but most wouldn't, so it's tolerable. but PCCU doc had this to say:

"so, we're just waiting till tomorrow, when the doc we want is on in toronto. then asher will be able to go and get his pacemaker. until then, if his HR drops to 30, even in his sleep, and he doesn't have any symptoms, we're just going to leave him. rouse him if he drops to the 20s, but leave him if he's in the 30s with no symptoms. but if he turns grey, we're going to poke him [give him the atropine]." i told her that once he's in the 30s he is very dark grey, darker than i've ever seen him (and oh, the shades of grey i have seen him!), so she nodded and said, "yeah, if he's like that tonight, we're gonna poke him."

so that's the plan. i won't go on my rant about the dietetic assistant i've been dealing with about asher's menu, but can you believe they don't have a low-fat/fat-free diet for kids at this place?!?! and she seems to think that he can still have red meat and mashed potatoes and low-fat cheese and cottage cheese (regular) and stuff like that. this morning, i'd had it, but told her politely to just call the dietitians at sick kids and talk to them. here, they seem to think that we've been given a total fat per day maximum. i told her, "no. it's fat-free. that's what i was told, that's what is written on the list i gave you. so i don't need to know how many grams of fat are in the mashed potatoes or lasagna. i was told fat-free. that's it. fat-free. i can't help you beyond that, but i really don't want asher having chicken breast for lunch and supper every day. what do you do about adults when they have chylothorax? this can kill my son. please, just call the dietitians at sick kids. they can help you better than i can." (and i realize that sounds snippy, but i was actually more gracious than that. i'm just tired of trying to explain to her every day that chylo can kill asher, his diet needs to be fat-free, i don't know how many grams of fat he can have in a day, because the therapy is fat-free. that's it. this isn't rocket science, i don't think, and i don't think i'm asking too much here. just a machine to keep my baby's heart beating, and a diet that won't kill him.)

ok, maybe i didn't spare you the rant. sorry. lol

so that's where we're at right now. asher is playful but pale and grey and sweaty, i'm rested and frustrated with dietary but hopeful for tomorrow, and we're just twiddling our thumbs and hoping asher doesn't smash his head on the bed rails if/when he faints.

please continue to hold us in the Light right now. it's stressful and exhausting here. we're managing today, but who knows what tonight (or tomorrow) will bring. thanks. :)

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