Tuesday, July 12, 2011

it's the afternoon of our resp appointment...

and here i sit, pretty sure of how i actually feel about it all.

i want to cry.

i know we needed to go. something isn't right and it needs to be investigated and what not...

so here's the deal:

it's not asthma.

it's not nothing.

apparently, i "said the right things" and doc believes asher has some kind of chronic bronchitis. the CT will give us a better idea what we're dealing with. then she added, depending on what the CT shows, we may need a bronchioscope. this would involve a camera in his airway and maybe some samples of whatever they find in there.

and for those who are wondering... plastic bronchitis was mentioned and discussed. for now she's calling it possible chronic bronchitis, and we're taking it all one step at a time, but not taking our time. she's definitely on top of this.

pre-admit clinic (when we'll meet with the anaesthetist and give consent) is at the end of july, and the CT is friday, august 12. then we see doc again in clinic on the 16th (that's a tuesday) to discuss what the scan showed.

she also sent home some specimen jars. even though, up until now, asher has been swallowing anything he coughs up, she wants samples of anything he does get out. she's not holding her breath for this, though, since she said that it's not uncommon for kids his age to swallow whatever comes up. even a cast (the little bits produced by PB) would more likely be vomitted out from excessive coughing, rather than to actually be projected with a couple coughs.

i'm not going to lie, i'm scared. i don't really know what i was hoping for today. nothing good could have come from this appointment. (and yes, "it's not respiratory" would not have been good news. because if it's not resp... then what is it?!?!) but "fortunately" it is respiratory.

and i want to cry.

because even "run of the mill" plain ol' chronic bronchitis isn't good for a heart kid... the interactions between the heart and lungs... ugh... let's just say, what happens in one affects the other, and of course, never in a good way...

in the meantime, she put asher on flovent, a steroid inhaler. we're trying it for a month, to see if it will help.

please pray that it helps.

ok, i'm gonna go now... the littlest man remembered that i promised to buy him something if he went to sleep last night and behaved at his appointment this morning. boo!!! haha

ps - for those who want to know: 100.8 cm tall (which explains why he ate as much as he did the other week!), and 15.7 kg. (for the non-metric readers: that's 39.6 inches and 34.6 lbs.) his sats were 95% (the highest they've been in a while!), heart rate was 85 (slightly higher than pacer settings, so that's nice), and BP was 105/53. he was also very active, a nice warm pink colour, and only slightly puffy around his eyes. he didn't cough once. haha but she was happy that he looked so good, because now she knows his norm.

pps - i like our doc. she's very nice, pleasant but takes it all very seriously. easy to talk to, and she really listens, and she's not taking asher for granted. yup, i think this will be very, very good.

ppps - please hold us in the Light, especially me. the last few weeks have been really rough for me, and all of this now isn't helping. i just feel a little sad and overwhelmed and i don't want to lose my baby but for the life of me i can't shake this feeling that we've now started that slow decent toward the end... basically, i don't have a whole lot of hope right now. i'm weepy and tired and scared and lonely, and all of this compounded by the several other stressors i have right now, including much needed repairs on my truck and house, and the lack of funds for either. sorry, just needed to vent... thanks for "listening."

it's the morning of our resp appointment...

and here i sit, not sure how i actually feel about it all.

we're adding another specialist today. asher's been wheezing for a while now, he has a nasty wet and crackly cough, his sats are dropping. nothing much shows up on x-ray, but maybe the CT scan will show something when the time comes.

it's all so strange... it almost feels pointless, going to see another doctor, hoping they'll fix my baby, since they can't. sure, maybe they can fix his resp issues...

but they can't fix him.


"given that the fontan is palliative, he's doing as well as can be expected."

yes, i know that, technically, that is all good news. he's doing as well as can be expected. hooray!! but...

at the same time...

there's that p word.

why has that comment hit me so hard? i mean, it's completely true. the fontan is palliative. they can't fix asher's heart, but they can make it keep beating for a little while longer. and that's what they've done. but it's not a repair, and it's not permanent. his circulation can't last like this.

it is the very truth of the statement that hurts. i suspect i'd let myself believe that maybe, just maybe, asher will grow up. i mean, he's made it through so much already, right? he should have died so many times by now, and yet here he is, right? maybe he'll beat the odds and he'll finish high school and college and he'll get married and have kids and have a great career and he'll live to be 107.

given that the fontan is palliative, he's doing as well as can be expected.

i can almost hear the clock ticking.

this morning, like the last few weeks, i've been wrestling with the seeming futility of all of this. why bother taking him to emerge? why bother seeing cardio? why bother starting with a new specialist? why bother with tests? if this is the best he's gonna do, then what's the point?!?!


what if these docs can give him just a few more years? then again, what if he still has a few more years, and they can give him ten more years? what if they can do something that will allow him to not only start high school, but to finish high school??

what a horrible thing it is to hope against hope that your child will live long enough to go to high school.

and yet, this is my reality.

there's no denying it: HLHS is a death sentence. given asher's extensive list of diagnoses, and his history, and his present, the odds aren't in his favour for a long life. he's not actively dying right now, thank God. but there are the little things that pop up and add up and take their toll on him...

and on me...

and sometimes, it's just a little much.

and sometimes, it's not nearly enough.