Monday, March 8, 2010

i'm baaaa-aaack... with mixed news

thank-you so much to wendy and mom for keeping the blogosphere up-to-speed on the goings-on in asherland over the weekend. i was much too busy visiting with blithe and bram. and don't worry, wen, you did just fine. lol so thank-you. <3

so i'll get the good news out there first, so no one has a heart attack when they see this on facebook (wendy and tanna, i'm looking at you!)...

asher is now in a much better mood, having visited with his brother and sister two days in a row. he really misses them, and i know they miss him, too, so it was lovely to see them all together. asher and bram had tons of fun playing with the train table in the playroom. the kids were even enough to inspire asher to walk down the hall... under much protest, i should add, but he did it, nonetheless, since it meant play-time with his brother and sister. so that's lovely.

and before i forget, his drainage tested negative for chylothorax. wendy did a great job describing it the other day, but for those who don't remember, a brief re-cap: during heart surgery, it is possible for a lymph node to get nicked. the lymph nodes take fat out of the blood, and when it is nicked, the fat (chyle, pronounced "kyle") leaks out into the cavity around the lungs and heart. left untreated (treatment is a fat-free diet for 6 weeks), it will slowly suffocate the patient. asher had it after his glenn and it sucked, to be honest, so when they were concerned about it on the weekend, i was worried. but it's negative, so i'm happy.

he is also eating more. last night at midnight he asked for eggs, so i got him scrambled eggs and hashbrowns for breakfast, and he ate more this morning than he has all week, which is encouraging. since he is usually a bottomless pit, it has been difficult seeing how little he wanted to eat, but he seems to be returning to normal-ish eating again, so HOORAY!!!

now for the not-so-good news.

my mother posted last night about asher's poor fluid intake. their goal is for him to get 910 ml of fluid a day. by yesterday evening, he'd had 334. hence the threat of an NG-tube. understandably, asher did not like that idea. in fact, he clamped his hands over his nose and started crying, "no! i not want tube in my nose! i not want tube!" i told him that he would have to have a tube if he didn't start drinking. over the next 2 hours, he drank 250 ml. still not enough, but much better than before. and this morning, we have had the same conversation every half hour or so. "asher, do you want something to drink?" "no." "do you want a tube?" "no, i want apple juice, please." works like a charm; he's had almost 200mls so far.

now the bad news. sigh.

asher's blood pressure has been (thanks to his special "old man cocktail" of a diurretic, ACE-inhibitor and beta blocker) perfect for several months now. 80s over 50s. beautiful. but over the last couple of days, it's been going up. and up. and up. yesterday at one point, it was 114/65. to put that into perspective, mine is 110/70. yeah. he isn't as puffy anymore, thanks to  a combination of 2 diurretics (HCT - his usual one - and metalozone. no lasix for asher because of his kidneys), but there still is some residual puffiness around his eyes, but he can open them fully, so no big deal. that being said, the only reason his fluids are even balanced at this decreased level... is because of the chest drainage. even with 2 diurretics, he isn't peeing as much as they'd like. however, last night he was refluxing pretty badly (i could hear it, and for the first time in his life - and remember he has a history of "severe GERD" - he was complaining that it hurt) and he was sweating. and by "sweating," i mean that he soaked through his sheets and jammies in 10 minutes. soaked them! you could have wrung them out! disgusting!! and in 10 minutes. yeah. the nurses kept asking if he's like this at home, because some kids sweat in their sleep. i told them that asher usually sleeps under 3 or 4 blankets and he never sweats. the nurse... the heart nurse... who deals with this sort of thing all the time... was really worried.

now, i know there are some of you out there who read this paragraph and have small coronaries of your own. yeah. that's about where i was at last night. and i'll admit, i'm still a bit concerned, since asher is still very pale. but, i'm aware that there are some of you reading this who are scratching your head and going, "why is heartburn and sweating so concerning?" so here you go... a crash course in severe CHD, ie, the list all severe heart moms memorize shortly after diagnosis:
  • paleness and increased cyanosis (blue spells)
  • puffiness
  • increased blood pressure
  • decreased urinary output
  • irritability
  • reflux/heartburn and vomiting
  • decreased appetite
  • sweating
read this list over again, then re-read my description of him above. yeah. quite similar, wouldn't you say? and for the uninitiated... that's the list of symptoms of CHF. congestive heart failure. yeah.

so please continue to pray/send good vibes/cross your crossables... whatever it is you do, please keep doing it. asher has a looooooooonnnnnnnnggggggg history of CHF (hence his old man cocktail, which he has been on for quite some time... like, forever) and believe me, it's just as scary now as it was when i first brought him home after the hybrid. what's even worse is when you're used to it... which i am. and when you expect it... which i do.

so there you go, the latest update. i'm off to grab a coffee and some lunch and head up to order asher's lunch. how awesome is that, eh?? i actually get to order him lunch, instead of going to the kitchen to grab a bottle of formula!!! i could get used to this! although, i have to say this... i've waited so long to see asher eating and drinking, swallowing with ease... but now i'm disgusted by it at the same time because honestly, he's the loudest swallower i've ever met!!!! and frankly, i don't think there's a more disgusting sound in the world than the sound of swallowing. blech!! and i'd feel guilty about saying any of this, except that wendy, another heart/tube mom has also heard asher drinking, and she agrees. yuck. LOL

1 comment:

ChristophersHeart said...

He is TOTALLY the loudest swallower EVER. He's adorable, except for when he swallows! <3