Tuesday, May 18, 2010

Detailed report

Ok, so it's MUCH later.  But I tell ya, the past 10 days have been a mess.  I'll take you through the surgery then post separately for updates since.

I did go to work that morning.  Figured it would give me something to do besides freak out.  Well, not so much.  I get a call saying they wanted to move up her time from 11 to 10.  :(  I wouldn't make it there before 10, but I didn't want her to have to go without food for that extra hour.  So I gave a thumbs up.  And then my thumbs started to shake.  I got there just after they took her back.  So far, so good.  Now get me a latte.  God bless my hubby.

1) Reservoir removal went quite well.  The nurse came out to tell us that she was asleep and that the docs were just getting started.  I kid you not.  Less than 10 minutes later, Neurosurg was out saying he was done.  I was nervous since it wasn't our regular guy, but man, this one seemed to do great anyway.

2) Lower bronch was iffy.  Pulmo couldn't get a 2.8 flex scope in past her vocal cords.  Bad.  So he went through the trach to take a look.  Lower stuff looked pretty good.  I think it was the right side that he said was a little floppy, but nothing that overly concerned him at this point.  Odds are, it would stiffen up as she got bigger.

3)  Upper bronch sucked.  Her airway has basically stayed exactly the same.  Still pretty severe subglottic stenosis (aka narrowing of her airway just below her vocal cords).  ENT was able to dilate it a bit forcibly, so we shall see.  She'll need a repeat bronch later this year to check.  Two big things they will be looking for.  A) did the dilation take and B) does controlling her reflux reduce swelling?  If her airway is still too small, we are looking at another dilation September-ish then another bronch next spring/early summer.  If things haven't improved by then, major surgery.  As I like to put it, they would have to go in and "crack the straw."  Split the airway length-wise and prop it open with a piece of cartilage from a rib.  Sounds like fun to me too!  In the meantime, she is entirely trach dependent.  It is a life-saving piece of equipment for her.  She could not live without it.  Gee, I just love hearing that.  Oh, and because her airway is so narrow, they don't want to try the passy-muir valve yet.  That's the thingy that would allow her to try to vocalize.  Well, at least he DID say both of her vocal cords were moving!  It was possible that one or both would have been permanently paralyzed by her heart surgery when she was a week old.  So take that you bad news bearer!

Honestly, I don't see progress being made.  Her airway hasn't improved since she was trached, so I don't anticipate much an improvement down the road.  Some may say I'm being a pessimist.  I say I'm just trying to be realistic and prepare myself.

4)  G-button/fundo went really well.  We were prepared for that part alone to take up to 4 hours.  M was out of surgery and into recovery from everything at about 3 1/2 hours.  Pedi surg did not have to open her up completely.  Whew!  Huge sigh of relief there. 

Now I just had to wait to see her.  She took her own good-natured time in recovery, so I went to the gift shop and bought her a Hello Kitty key chain.  I thought she might like to play with it hanging down from her playmat.  Tick tock.  Tick.  Tock.

1 comment:

  1. hanging on just waiting to hear the rest. i saw some updates on FB but i am not on it enough to get the full picture. glad all seems to be improving, anyway.