Wednesday, July 30, 2014

Rough spot for Lucy

First of all, Lucy is okay.

Yesterday afternoon, I was giving Lucy a bath, and she was having a hard time controlling her secretions.  I suctioned her, but I just couldn't get her clear.  I snatched her out of the bathtub, and tried again to clear her with suction on her bathroom bench.  She was moving air, but hitching, and I didn't have her pulse ox on since she was in the tub, so I grabbed her unceremoniously and ran down the hallway to her cough assist and pulse ox.

 I had thrown her old g-tube extension away, and was going to put a fresh one on after her bath, so I hooked her up to her pulse ox and fished a new extension out.  By the time her pulse ox was reading, it said her oxygen level was at 90.  Not great, but not life-threatening on its own, and it was holding steady.

I got her extension hooked up, vented her, and coughed and suctioned her.  Her numbers dipped a bit lower, but I kept working until she was cleared and her numbers were better, then dressed her and put her on bipap.  She was worn out, and was quiet for the first 15 minutes or so of her bipap time, then perked up a little.

When I was relaying this to Noah, I told him that I wasn't sure if I should have taken the time to vent her, or proceeded to cough her without the vent.  ("Venting" Lucy involves hooking up her gastronomy button to a tube, and opening the tube, to allow air to escape her stomach, avoiding pressure.)  I felt I had done the right thing in venting her, since having too much pressure in her stomach while being coughed could lead to reflux or vomit.  It had never happened in all of her 4.5 years since her g-tube/nissen surgery, but better safe than sorry, right?

Boy howdy, is that the truth.

Today I was doing Lucy's morning treatment, and we had just finished her second round of coughs.  I unhooked her venting syringe and pushed her IV pole away, getting ready to put her up to drain.  She started to hitch a little, so I paused, and thought, "Oh, one cough should be fine."  Turned it on, and coughed her.  We had coughed her without venting several times before we really knew better, and I assumed just one would be okay.

You know what they say about the word "assume."

Big mistake.

The inhale comes first, and on that inhale, I heard a HUGE rush of air flood her stomach.  I knew that wasn't good.  After the exhale, I pulled the mask away - and out ran a dribble of yellow from her mouth.  Her formula.  The cough had pushed air in her stomach, and pulled her food up past her nissen, which is a surgery she had to prevent reflux and vomiting.  It's never happened to Lucy before, but it's not impossible, and several SMA children vomit and/or reflux around the nissen.

The formula was running out of her mouth - and Lucy wasn't breathing.  Her eyes widened.  Her airway was completely cut off.  I suctioned.  No air passing.  I coughed again.  Air rushed in her stomach once more, her airway blocked, but no formula came out.  Suctioned again.  No air passing, and now her numbers are dropping.  Lucy looked terrified, and I had to decide to keep working on her as is, or take the precious seconds to re-hook up her vent.  I told her what I was doing, why I had to, and hooked up the vent, depressing her stomach, which let tons of air out.  I still wasn't hearing any noise from Lucy, and her face was dusky.  Numbers were in the low 80s for O2, and I don't even know what her heart rate was at.  I coughed and suctioned until finally she started to pass air.  She started to cry.  Music to my ears, and a horrible sound all at the same time, because I can't imagine how terrifying it is for her.

I re-started her treatment, to try to clear out any stomach contents that she may have aspirated.  Stomach acid is especially caustic, and could do serious damage to her lungs.  Aspirating alone can be cause for atelectasis (lung collapse) or pneumonia.  Her numbers were good, and though she was quiet (these instances are always very draining for her), she made it through the full treatment without panicking or having her oxygen drop.

I was shot.  Toward the end of suctioning her - I think it was after I heard her make noise - my hands started to tingle.  Like I had been sitting on them for hours, and they were finally getting the feeling back, except more intense.  Buzzier.  I don't know how to explain it.  The same with my head - it started to buzz.  My hands felt like they were shaking, but my mom said she didn't see them doing so.  She had taken Bert out to go to the bathroom at the exact moment I gave Lucy the initial cough that started the episode, and came in just as I was starting to hear sounds from her.

I know that Lucy has it relatively easy, if you look at the spectrum of SMA.  There are children who have more frequent episodes, or who crash harder.  I am grateful, SO grateful, that we don't deal with more severe episodes, or deal with them on a regular basis, but that doesn't make them any less scary.  Or draining, once they have passed.

I don't live life like my daughter is dying.  To me, that's not an eventuality of her condition.  It's not a given.  But it is, like it is for all of us, a possibility.  And while I was working on her, and seeing her numbers drop, I didn't know where - or if - they would stop dropping and go back up.  I was doing everything in my power, and it's heartbreaking and terror inducing to think maybe this time it won't be enough.  Those are just flashes of thoughts when you're in the moment, because you're focusing all of your attention on clearing your child's airway, but those flashes are there.  Maybe it won't be enough.  Maybe I'll suction when I should cough.  God please, PLEASE guide my hands to do what they need to.  Please clear her.  Please.

Lucy isn't a "bounce back immediately" type of kid when it comes to these episodes.  She's quiet and somber for awhile.  But this afternoon, she's seeming pretty much back to her goofy, sassy, bossy self.  Thank goodness.

After her full treatment, right before she fell asleep.

After her looong nap; she loves her bipap :)

I don't know if she has nightmares about these episodes.  I know I would.  My dreams are usually too abstract and bizarre to center directly on a specific event like this, but I'm sure some of the weird happenings are related to the extreme stress that I feel from them.  I just pray that any episode Lucy has teaches us, and prevents the same thing from happening twice.  It's an immense blessing any time we get another chance, and we never, never, take them for granted.

Needless to say, I'm very attached to Lucy right now.  Noah is very attached to Lucy as well.  This reflux is new territory for us, and something that, to me, means I need to just take an evaluation of any areas that Lucy may be changing, or weakening.  We would very much appreciate your prayers for this being a one-time incident.  It doesn't mean we won't still be extra careful from now on, but not having to watch Lucy go through that again would be a big blessing.

Hopefully our next update will be more upbeat! There are so many good things happening so quickly with Lucy's addition, so I don't see any way it couldn't be ;)

Friday, July 25, 2014

A Whole Hand! Lucy's 5th Birthday Party!

After the Dr. Seuss theme last year, I was out of themes for characters that Lucy liked.  I had planned to do an ice cream party, since she loves that stuff, and then she decided to like movies other than Tarzan!  My little girl is growing up! (sniff sniff)

We were settled on a Peter Pan shindig, and then two months before, Lucy changed her mind to Cinderella.  Since she likes the old-school, classic Cinderella movie, but doesn't go for any of the newfangled sequels and prequels and all that jazz, I wanted to stick with decorations that were in line with those illustrations.  Easy, right?

WRONG.  Cinderella, as she exists now, is all tarted up and flashy.  Lucy very much enjoys the old Disney movies period, and I wasn't sure if she'd even reconcile the current Cinderella plastered all over the Party City plastic tablecloths with the one from the movie she's come to love, (her favorite part is the Prince's dad jumping on the bed, trying to slash his Duke, btw) so I decided to make all of her decorations.  Because why not, right?

So I painted, and sewed, and papier-mache-d, and thrifted.  I managed to cobble together some pieces that I felt represented the essence of the original Cinderella, which could also be used in Lucy's soon-to-be-finished downstairs room (which is moving along at the speed of light!)  Brace yourself; pictures are coming.

The party was at Grandma and Grandpa's, 
so she couldn't very well ride in her princess dress.  
She needed a travel outfit.  I obliged, using this technique.

Then she changed when we got there!  I bought the 
Cinderella dress in the toy section at Target, and because
I don't like to do things the easy way, I used leftover rhinestones
from the hair clip I made to embellish the dress.

See?  Plain sequins, and then sequins with glass beads.
And because I liked the leftovers on the top so much, I went
and bought the rest of the beads at half off and finished 
off the whole bodice!  Bling bling!

What's Cinderella without her carriage?  And a fairy godmother?

You think she liked it?

Yeah, I think she liked it.

We also picked up a matching purse and wand at Target.
The wand flipped open with the press of a button.
She dug it.

She also dug the silvery beads that I hung on the chandelier.

Shimmery, crystal-y beads.

BEADS. And I get to reuse these for Christmas.  Thanks St. Vinny's!

And there was this.  A nice big canvas, that I had in our attic, was
turned into Cinderella's view of the castle from her window, as
depicted in the movie (or as best rendered from the blurry screen
shots I managed to find online.)  It took me a few sessions.  I'm more of
an abstract, throw-paint-at-the-canvas type of painter, mostly because I'm 
never satisfied with outcomes when I try to duplicate an already existing image.
Overall, I'm okay with this - plus, artwork for Lucy's room!  Two birds, people!

I always loved the scene where the birds and mice
are making Cinderella's dress, (hey, wildlife, I could use a 
hand with *my* sewing, but whatever) and I saw a version of
it that was based on a pattern I know well, so I added a little
of my own flair :)

Yep, I just draped the string of beads over my
"dress form."  La-zy.  The dress form is a hanger wrapped
in leftover poly quilt batting, and then black fabric, glued
to a broomstick.  Thanks to Grandpa for drilling out the 
round base, and Grandma for the hanger idea!

You can't make a dress without a dress pattern ;)  I got a book from
my beloved thrift store, St. Vinny's, painted the edges gold and sprinkled
them with gold glitter.  Then I traced these original images from the movie stills
online onto some pearlized scrapbooking paper, colored them with Lucy's crayons, 
and slapped those babies in the book with a little hot glue!  
Thread spools and basket also from St. Vinny's.  Love that place!  

It's made in Lucy's size, so she can wear it now :)

I am obsessed with book banners!  It took months of scouring good ole' SV
to come up with two of the same vintage Cinderella books - the ones that sell for $5+shipping each
on eBay, I got for $1.25 - for both!  I used a bowl to trace the rounded bottoms.  

Originally, I planned to use all pages, but that banner ended up being
22' long, so I went with the prettiest illustrations, that captured the 
general storyline.  Clipped them to decorative rope with mini
clothespins, easy-peasy!

Lucy's Aunt Mary knows how to get all the good shots ;)

Cinderella wouldn't have gotten anywhere without her 
pumpkin.  This is where the papier-mache came in.  This pumpkin
came to me as a jack-o-lantern, so I stuffed newspaper in his
toothy grin and papier-mache-d over it, and then spray painted the whole
shebang silver.  A little gold glitter on the top, and voila!  Candleholders
were from our wedding, with a couple Hobby Lobby deep discount 
items added (can't beat 90% off!), and the nice fat one that's holding 
the pumpkin is a thrift store find.

And the buffet was sprinkled with tiny acrylic diamonds, from the
lovely Christmas section at Hobby Lobby.  I'm not sure what 
diamonds have to do with Cinderella, but SPARKLE!

What's a party without balloons?

And beads on the chandelier?



Take a breather, Lucy.  Focus.  On something beside the beads.

Like this!  Your glass slipper cake, made by the creative genius
that brought us your Lorax cake last year, the wonderful Josh's Cakes!

Oh, that's pretty!


Adding the candles, while Prince Charming (aka Mateo)
looks on.

Ooh, fire!  Love me some fire!

Still, beads...

Oh, but they're singing happy birthday!  To me!

And she had to clap for the singers :)

She got a little goofy while we were cutting the cake :)  Kind of giggly, kind of eyeroll-y.  She can't eat her cake, but we let her have a little taste of the blueberry filling.  Watch the video in the link above!  And speaking of blueberry filling...

Lucy's glass slipper cake was white cake, vanilla cheesecake, and blueberry filling.
That's right.  Cake.  Cheesecake.

With a divine buttercream frosting under the fondant.
It was spectacular.

And look at that detail!  The quilting!  The gold tassels cleverly
fashioned from licorice!  Fondant buttons!  The perfect perch for
Lucy's glass slipper.  Thanks again, Josh!

After that crazy delicious cake, Lucy got to open her presents!

Mateo was all "Girl party?  Presents not for me?  This is for
the birds!"  Don't worry; his was the weekend after :)

The only female to get an ironing board for her birthday
and be happy about it.

We also had to get some shots of the price and princess before we wrapped up the party :)

Okay, you got your picture!

Now it's time to check out the BEADS!

Seriously.  She spent a good portion of that party admiring the silvery beads on the chandelier.  She has glitter in her veins - wonder who she got that from? ;)  I wanted to get a pretty light fixture like that for her room, but now I'm rethinking it; I'm pretty sure gazing at it would end up being the only thing she'd want to do!

As per usual, Lucy was up early the morning of her party, so she was pretty worn out by the time her party started.  She's been needing her bipap more in these situations, when she's tired, as opposed to just "wanting" it, when she was a little younger.  She's definitely changed in strength over the last year, so we're accommodating.  Getting used to having her on her bipap sometimes when we're out and about, and knowing when tired is *too* tired, so we can head off any situation that might become more emergent.  You can hear the relieved hoots when she gets her bipap during these worn out times.  Of course, if she would go to sleep and wake up at decent times, and take her naps, we may be able to avoid some of these instances, but try convincing her of that!  At any rate, we're very grateful for the machines that allow her to rest, keep her healthy, and make her happy.

Time to start planning next year's party!  Maybe we'll revisit the Peter Pan idea!  Or the ice cream.  Who knows what she'll like by then?  Whatever she chooses, I'm sure there's a Pinterest post for that ;)