Tuesday, September 28, 2010

It’s gonna be a LONG 4 weeks.

Piper’s love in life (for that minute, anyway) is her bath.  I’ve never seen a kid so in love with the water. 

Unfortunately, she has four weeks before she’s allowed to “soak” her incision.  That’s a whole lotta baths that I have to keep her from laying down in the water.  They said that she can splash and it won’t matter, but laying down in the water isn’t an option…

I finally got the nerve up and gave her a bath on Sunday.  I filled the tub and quickly realized that there was NO way I was going to be able to keep her upright if I put her in there.

My solution?


Tub bath in the tub.  The Tupperware bucket is bigger than the one we put her in in the hospital, but not so big that she can lay down.  Not quite, anyway- she can still fold over with little effort.  But at least it kept my heart attacks down by a couple. 

She still had all her toys outside of the bucket- but I don’t think I’m going to be filling the tub AND the little tub for each bath- I try to be ecologically conscious.  Although with a face this cute, it’s awfully difficult.     P1080293

Only problem is that she figured out she could stand up in the bucket, too.  So it didn’t keep me from all the possible heart attack situations.  P1080294

This is gonna be one little squirt who’ll be very glad to get the all-clear.  At least for the bath part.  And this mama is going to be very glad to get the all clear for the picking-up-under-the-arms part.  Although we are getting rather good at that

Monday, September 27, 2010

A Piper’s Progress

So before all of the drama from the past few weeks hit, I was planning on doing an update post, for my own memory, of what Piper’s doing right now.  We’re about half way through to our next IFSP, so I like to keep a tab on our goals to make sure I’m not missing anything.  It amazes me the amount of things that Piper’s learned since June!

Gross Motor:

Piper’s cruising.  Everywhere.  All. The. Time.  She can pull-up onto anything, even walls, and go between surfaces.  She’ll even go across a surface with one hand.  She’s also pulling up to something, like the laundry basket, and pushing off into a stand more and more often.  The problem is that she’s only doing it when she isn’t aware she’s doing it- back to the confidence thing again. 

Not a great picture, but she was going back and forth between the ottoman and the table.  We were proud of her for the distance in between and the different textures- one was hard and smooth, the other soft and squishy! 

She’s been exclusively hands-and-knees crawling for well over a month now (we weren’t convinced she was going to truly crawl because her creeping was so efficient; we hadn’t pushed it, and just skipped to cruising.  She decided to do it on her own!).  Except it’s not really hands and knees- it’s more like hands-knee-foot crawling.  Everyone laughs at her- and we’re all convinced it’s because she can get more propulsion with the foot up than if she were just on her knees.  She’s all about speed. 

Cute butt short of her foot/knee crawling.  Goofy kid…P1080211

And because she’s all about speed?  I’m certain that her coordination is better when she’s running (yes, running) than when she’s walking.  Before we went into the hospital, I was fairly convinced we were going to get her walking within a matter of weeks.  But now that we can’t practice it in the typical ways (we can’t catch her under her arms when she falls for two months), I’m not sure how we’re going to encourage her to do it, safely.  Hoping that our therapists can give us some pointers. 

We have been able to get her to take TWO steps, unassisted, away from the wall.  Of course, having some kind of food motivation helps exponentially.  No one can say that our kid doesn’t get enough to eat, lol.


Piper’s up to somewhere over 20 signs now.  All of which she’ll do unprovoked.  It’s AMAZING to have the ability to communicate with her this way.  It’s also been nice to use at places like church, because I can sign something to her without saying anything, and she’ll understand.  I’ve tried fervently all day today to get a picture of her signing something; apparently stage fright can occur at an early age…

She has several two word sentences that she’ll sign, and uses them in different ways.  Observations like “doggy eat” when she’s watching them eating (or when she’s fed them something off her tray, which she knows she’s not supposed to do), descriptions like “Mommy silly”, or requests like “Mommy, I’m sleepy” occur many times a day.  Sometimes she’ll be squacking for something to eat, starting with signing “Eat, Mommy!”, move on to “Eat, Daddy!”, and even, if she’s really desperate “Eat, Doggy!”, trying to convince SOMEONE into giving her something.  Sometimes it morphs into a “Eat, MommyDaddyDoggy” fiasco, in which case I know she’s gotten to the end of her rope. 

She’s made up several signs on her own, which I don’t put toward her count until I can uncover what it is and verify that she uses it for that one thing.  The funniest has been a progression of degrees of “like”- there’s one sign for just plain ol’ like, one for really like, and one for really REALLY like.  It cracks me up.  I’m also fairly certain that she’s gotten a sign for Piper; I just realized that’s what she was saying, so now I’m on the lookout to verify that’s what she’s meaning.  There are at least a half dozen more that I’m clueless as to what they mean… 

She’s also getting REALLY good at identifying pictures in books.  She will point to an object on request, even if there are lots of pictures on the same page.  We’re working on increasing her vocabulary and the number of different images that she will recognize.  Most anything that she has real-world experience with, she’ll point out (flowers, balls, dogs, kids, babies, cars, shoes, clothes, bubbles, etc), and we’re starting on things that are a little more abstract (fish, bumble bees (mostly because she’s really interested in them), farm animals, etc). 

Her receptive language is probably the area she excels in the most.  It catches me off guard on occasion when she understands something that I didn’t intend for her to.  I’ve changed my perception from “just talk to her all the time because it’s good for her” to “she understands unless she shows you otherwise”.  It’s pretty fun to watch her follow directions in the presence of someone who’s not prepared for her to do so, like the doctors.  When we were in the genetics clinic, Piper was crawling all over the floor, and decided to stand up on the foot rest of the exam table.  I told her that it wasn’t safe- she turned around, looked at me, smiled, got down, and didn’t do it again.  The doctor was flabbergasted.  Oh what fun!!!

Fine motor:

Piper’s really had little desire to practice her fine motor skills lately.  It’s been a little slow-going.  I refuse to make her sit and play those games for longer than a few minutes if she’s not in the mood, so she doesn’t get as much practice as she does with her gross motor.  However, she still does pretty well for herself.  She can do the piggy bank, she’ll stack rings, and put things into boxes or nested cups.  However, that being said, each of those requires you to actually LOOK at the object first.  If she’s really not in the mood, she’ll have the coin in her hand, for example, and be looking at ME, blindly putting the coin toward the darn pig.  Somehow she hopes that it’ll be good enough, or something.  Goofy.


Piper’s had a little, tiny bit of a growth spurt the last month or so.  She’s now barely above the 5% on the Ds chart for weight, and still just below for length.  She weighed in at a whopping 14 1/2 pounds for surgery last week.  Sometimes I get questions about her being so little.  Truth be told, no one really knows why she’s so tiny.  The kid eats, a lot- even the nurses in the hospital last week were shocked when they watched her.  They’ve run every test, repeatedly, to make sure that we’re not missing something.  Frankly, she’s not significantly smaller than I was at the same age; we’re all convinced that she’s just little, and it’s just who she is.  Which is fine with us!  What she lacks in size, she makes up for in spunk! 

The downside to this whole thing is that I’ve planned a 6-12 month sized wardrobe for her this winter.  Aaaand it’s not gonna work.  She’s still wearing her 3 month clothes for this summer.  Anything that’s two-pieced needs to be a 3-month (even though she’s considerably over the size limit on the tag), and if it’s one-pieced, it needs to be 6-month.  Not that she’s lacking in attire, don’t get me wrong- just some of the cuuute clothes that I had stocked up for this season will have to wait until next year…  Oh well!!!  At least we get our money’s worth…

Saturday, September 25, 2010


…and it feels so good!

Luke’s parents took the dogs for part of the time Piper was in the hospital.  It was really nice to not have them to worry about, too, and allowed Luke to spend more time at the hospital with us.  He picked them up today- Piper was so happy to have her doggies back in her life!




Friday, September 24, 2010


Oh, Lordy, have I had my hands full today!

Piper was SO excited to wake up in her own bed this morning (after sleeping for almost 12 hours straight, mind you).  And she never. stopped. moving.  All day long!

I was getting her breakfast ready, turned around, couldn’t find her.  Walked down the hallway to find this:P1080224

She was pulling all the clean clothes out and throwing them across the floor.  Thanks for the help.

I got her in her high chair and fed her breakfast.  She wasn’t a huge fan of cereal this morning, so only ate about half of it.  I got up to get a washrag to clean off her face, and as soon as I turned my back, she pulled the glass bowl off the table.  It shattered all over the floor.  And it was half full of cereal still.  So I left her in her seat (which she repeatedly informed me she was not enjoying), picked up the big pieces of glass by hand, mopped up the cereal, and then vacuumed the area to make sure all the shards were up.  Then put her back on the floor.

I finished cleaning up, turned around and saw this:P1080217

She was going between her different spots of toys and pulling everything down or out of where they were stored.  She played with each one for a second, put it down, and got another.  It was like she was saying “Oh, my toys!  How I missed you!!!”

Once she got tired of that (for the time being), she found the coat closet.  And all the gardening gloves and shoes that are kept there.P1080222

About this time, I was exhausted, and decided it was time for a nap.  She, however, not so politely disagreed.  After the fight to get her nasal cannula on (lemme tell ya how much fun this is…), I tried for a good while to get her to go to sleep.  I even tried putting her in my bed.  No go.  Off went the cannula, and she was off tearing my house apart.  Again.

We ate some lunch, and she played some more.  FINALLY around 1:30, she got tired enough for me to get her down for a nap (after another fight with the cannula). 

She got up a couple hours later, and I decided that, in order to keep my sanity, we’d go for a walk around the neighborhood.  She screamed in excitement.  I put her on the grass in the front yard so that I could get her stroller out and set up.  She crawled across the cement, on her hands and knees, to come get me.  Silly girl.  Good thing she picks up her knees when she crawls, and doesn’t scrape them too much. 

She talked to the bunnies we saw on the way, waved at dogs, and watched intently as she was initiated back into the real world again. 

By the end, she was really relaxed.  Really relaxed…P1080231

Sweet, sweet sleeping baby. 

Thursday, September 23, 2010

The best part of being in the hospital…


Piper decided she’d take herself out, thankyouverymuch.

Last night, I wasn’t sure they were going to let us leave today.  As soon as she fell asleep hard, she started desatting into the mid to low 80’s.  And seemed to stay there for a large portion of the night.  The nurse tried some room air trials several times, but we didn’t get anywhere.

So today during rounds, we talked about our three options.  One was that dropping to the 80’s probably wouldn’t do any harm, so we could just “let it be”.  No one liked this idea, of course, so that one got thrown out the window.  We could stay tonight and see if she continued to desat—our theory is that, due to pain, she’s just not breathing in as deeply as she needs to keep her O2 needs up.  So, then, if that’s the case, as her pain becomes less and less, her oxygen need would diminish.  The third option was to just go home on a little oxygen at night, and come back in a couple weeks for a sleep study.

Seemed like the best idea was just to go home.  To get out the hospital so that she could go home and start healing here.  We figured that she’d probably do the same thing tonight, and we’d end up in the same place tomorrow, anyway.

They couldn’t send us home with a pulse oximeter (“act of congress” is needed, apparently, lol), so we can’t discontinue until we find out what she’s doing overnight, hence the sleep study.  I also overheard that ENT is fairly convinced that she must have obstructive sleep apnea because of the airway issues.  I’m not convinced on this front because this kid is probably the quietest sleeper I’ve ever known.  They said that our ped would be able to write an order to discontinue the O2.  I’ve heard of people using at-home pulse oxes—if any of you have, do you think they’re accurate?  I would bet that my doc would take my word if I kept one on her for a night toward the end of the weekend.

We’re hoping that this is a short-lived period.  My got knows that it’s all related to surgery.  Besides, the four nights before surgery were fine

I’m SO not looking forward to a sleep study.  So so so so so NOT. 

Anyway, we’ll cross that bridge when we need.

We go back next Wednesday to take out the stitches on the top and bottom of her incision and the stitch from her drainage tube.  Then we follow-up with the ENT on October 14.  Of course, Piper’s next pediatrician appointment, and rescheduled ophthalmology appointment, are on the 11th.  Looks like October is going to be as eventful as I thought September was going to be. 

P1080213Bye-bye, Children’s!  We love you well enough, but we hope to not have this…  close?…  of a relationship for a long time.

We can’t even begin to express our thanks for the amazing outpour of love for our little girl over the past week.  This community is definitely one of the perks of being in The Club.  We love you all!!!

Wednesday, September 22, 2010

9th Floor Newbie

Sooo, we were transferred up to the 9th floor, the Cardiac Progressive Care Unit, this afternoon.

It all started falling into place when members from Cardiology came down to see her this morning and she was SCREAMING while the nurse flushed her IV.  That in combination with the fact that we (read: she) was up every 40 minutes last night, had an increased heart rate and respiration rate lead them to believe that the pain control down there left something to be desired.

So, now we’re on the top floor of the hospital, with views away from the construction that had been below us.  The nursing care is more intensive than it was downstairs, which we don’t really need, but I do feel more comfortable with their teaching of postop care to us, and their know-how of handling sternum care. 

The plan is to still go home tomorrow, so long as Piper does better tonight than she did last night.  She’s on Oxycodone and Tylenol now, so we’ll see how her system does with those. 

We got another visit from a therapy dog this afternoon- Piper sat on the floor and had so much fun playing with the little bichon.  When they were leaving, she got down on all fours and started to crawl out after them!  We got the nurse in to take off her leads so that she could play a little more freely.  She crawled a little, felt pretty proud of herself (we were proud of her for trying!!!) and decided that it hurt too much to continue.  Everyone has said to just let her regulate herself, and that’s what we’re trying to do.  It’s kind of hard watching her do some things and wondering how badly they hurt.  Or should hurt.  But I guess she’ll tell us, right?

For our Colorado buddies, thought I'd share a picture of what the rooms here look like.  Overall, the experience here has been TONS better than our experience at P/SL in February; don't get me wrong, I wouldn't doubt that we were there at a bad time, or just had a sporadic bad experience.  But still...  90% of the nursing staff has been AWESOME.  Every room has a full wall of windows, which is as nice for me as it is for Piper.  There are play rooms with toys (which we've never gotten to partake in because they were outside the doors to our unit, where she wasn't allowed with no pulse-ox), open areas at the end of the hallways with couches and tables to sit at, and lots of fun pictures on the walls to look at.  The room we're in now is a little smaller than the ones we were in downstairs, but still nothing to bark about.

No matter how nice it is here, we still cannot wait to go home!!!

Tuesday, September 21, 2010

Getting There!

When I got to the CICU this morning after the change of shift, at 7:45, Piper had, apparently, finally fallen asleep.  I think she’s starting to like the 4am parties in her crib.  I, on the other hand (and the nurse she had last night, for that matter), don’t have the same affinity for the soirees.  They took her arterial line out this morning after the morning labs were run.  It’s a huge plus, because arterial lines are notorious for infection.  Yeah!

She stayed asleep for a bit, until they decided to take out her chest drain.  Another big woohoo!  Although she wasn’t a big fan of getting it out, I’m sure that it felt better to not have a quarter-inch tub running up into her chest.  After it was out, look who greeted me (with a hairbow!!!)!

She was definitely still out of it, not terribly sturdy, and horribly swollen, but she even took something to drink from me.  AND she got to have some breakfast.  We treated her to pudding and pancakes; two delicacies she never gets to have at home. 

After they watched her for a bit after taking the tube out, we were cleared to go back to the standard surgical floor.  Not even the intermediate cardio wing! 

She’s hurting pretty good today, but dealing pretty well.  She’s moving around quite a bit on her own.  I’m not encouraging to do anything, but allowing her to do what she pleases, including standing up in, and cruising around, her crib.  (Note: yes, this has given ME a mild heart attack every time.  Apparently it’s not too bad, and I’m over-reacting…). 

Piper plays the sympathy card well.  She never gets to watch TV.  Ever.  Unfortunately, when you’re confined to a bed because you have leads that come off very easily watching to make sure that your heart is okay, TV is an easy thing to have on to give her something to do.  Terrible, I know.  But there’s only so many toys that can keep a very active child busy in a 4 1/2’x2 1/2’ barred box.  And really, until today, I feel like I’ve been really successful in not using TV as a source of entertainment.  But when the anesthesiologist came by tonight, Piper finally saw the TV, and didn’t. take. her. eyes. off. it.  I ended up putting a blanket over the end of the crib to prevent her from watching it.  I know.  Mean momma.  BUT, tonight, when I was trying to eat dinner, I went ahead and turned on the TV and let her watch.  She was SO excited…

She’ll be on IV pain meds through tomorrow afternoon, and then we’ll wean down to Tylenol.  If she really needs, they’ll let her have Morphine, but it’s been doing really nasty things to her blood pressure (she’s been running down around 73/31, instead of 92/45, like they’d like), so I’d rather not take her home on it.  We’ll see how she does with things tomorrow and go from there. 

She was off O2 this morning when I went in for the first time.  But tonight she’s having a little bit of a hard time keeping above 86, so she’s on a bit of blow-by.  I think she’s just not wanting to inhale deeply while she’s sleeping.  Thankfully we have one more night here to make sure she’s back to normal before we go home. 

The plan is to go home on Thursday!  We’ve gotten several visits from the therapy dogs, which Piper has loved, but I’m sure she’ll be glad to get back to her doggies. 

And me?  I’ll be stoked to have my bed back…

…and shave my legs…  But I didn’t admit to that…

Monday, September 20, 2010

Whew! What a day!

So, once we got back up to the CICU, we got to see the squirt.  They even extubated her in the OR and she was starting to wake up!

She was crying when we got there, but settled down pretty quickly.  I even got to hold her, which I wasn’t anticipating. 

She didn’t have any trouble being extubated, which is FANTASTIC.  She doesn’t even sound nasty tonight!!!  In fact, she sounds a lot better than she did yesterday even.  Wahoo!!!

The ENT came by and told us tonight that her airway was 75% collapsed at best before this.  Today when they were in there, they figured it was 20% at worst

What a huge blessing that we found this BEFORE she got really sick!

We went ahead and put her down a while ago for the night.  She’s in a private ICU room (not sure how exactly we scored that…), so we could have stayed there, but really?  Who wants to stay in the ICU anyway, with the big open doors.  We’re staying on the floor below in some family suites, that are actually really nice (and free!).  The nurse, who’s at least 6’8”, but probably closer to 7’, has strict orders to call me if she’s awake.  It may be a long night after all…

THANK YOU THANK YOU THANK YOU to all our blogging buddies for your thoughts and prayers and support!  


Surgery is DONE.  Although I can’t say I’m as relieved as I was hoping I’d be…

The BEST news is that they did NOT alter her heart.  I’m really glad that we didn’t have to GIVE her a heart defect.  And recovery should be easier, which is a huge plus.

They said that her airway did not look normal, but probably because there was so much compression at the site that it’s deformed her trachia a little.  We were also warned that it could take months for it to be rectified.  BUT, they were able to see clearly through it now, under positive pressure (not the negative pressure of actual breathing, of course, but it is better), so surely we’re on the right path!

They’ve taken her to the ICU, and are hoping to extubate her there soon.  Hoping to see her in about an hour or so, thanking God for pain management!!!

Thanks for all your prayers and support for our Little Miss!!!

Surgery Day

Surgery’s scheduled for 10- please keep Piper in your prayers this  morning.  Hopefully, if their plan works, it should be a relatively quick procedure.

If it doesn’t work, the cardio-thoracic surgeon will move her aorta and place in a different spot on her heart to see if it helps. 

We’re praying that we can stay clear from altering her little heart; the open chest is enough for us to worry about!

We’ll be spending at least tonight in the Cardiac ICU.  We’re hoping to get a place to sleep here at the hospital while she’s in that unit since we can’t stay in the room with her. 

Seems like one of the biggest worries everyone has is how she’s going to handle another intubation.  We’re praying that fixing this will make her airway strong enough to handle it.

I’m horrified, feeling guilty, anxious, exhausted…  And can’t wait for this to be over!

Sunday, September 19, 2010


Look what Piper got delivered!

Upon closer inspection of the card, Piper found out that they were from her little Buddy, Sawyer (and her mom, too, of course)!!!

I tried getting a picture of her crawling around with one string in each hand, but it was an abysmal failure.  She has had so much fun!!!

They’ve provided countless hours of fun and countless precious minutes of distraction.  And they continue to do so!

A big, giant, enthusiastic “Thank Yoooooou!!!” in her little quacky/ducky-sounding voice that may soon be a thing of the past!

Saturday, September 18, 2010

Rub-a-dub-dub Piper’s in the Tub!

I finally got to shower yesterday- You always forget how great something feels until you go a couple days.
Piper remembered, too.

Sort of.

Some of the rooms on this floor have showers, and some have bathtubs.  Ours is a shower room, which is fine for me.  Not so great for The Kid. 

So yesterday, our CA volunteered (!!!) to let Piper have a bath.  I figured it’d feel great to her, too!
They put that Press-‘n’-Seal suran wrap over her IV, and brought in a little bucket to set her in.  For the record?  I’m pretty sure that not many 16-month-olds have been given submersion baths in those teeny tubs.

Of course, she would have had MORE fun in a big bathtub where she could splash and play and stand and move and wriggle, but it was better than nothin’. 

Interested, but not too sure…

Her trying to decide if it was really a good idea or not.

Deciding it’s not too bad- I mean, really- having three people awing over you?  Life isn’t too bad…

Brrrr- she was chilly when she was done.  What a bummer that we had to have some serious cuddle time to warm her up! 

They’re going to let us use the big burn treatment tubs tomorrow to give her a really good wash down before Monday- it’ll make me feel better to send her into surgery nice and clean.     

Friday, September 17, 2010

Double YIKES

So we finally got to talk to the Cardi0-Thorasic surgeon and our ENT today, at the same time, too, which was nice.  It was not the conversation I envisioned having. 

Here’s things the way I understand them- they think that she has something called a Vascular Ring around her trachea.  It’s where part of the aorta is too close to the windpipe.  That much we knew.

However (don’t you LOVE the “however” in a medical situation?), the thing that has them confused, and the reason they haven’t committed to anything yet, is that every other time this has happened, it’s associated with an abnormally placed aorta.  When that happens, the correction is slightly easier to accomplish.  He was convinced that something had been missed in her echos in the past, but her echo this afternoon was perfect.  He used the term “undocumented” a couple times, which is great (right up there with the “impressive” comment from the anesthesiologist regarding the obstruction to start with).

So, the end-all of our conversation is that they know what they’re going to try, but they’re not convinced it’s going to work.  The ENT and the Cardio are going to be in there together.  They’ll do a bronchoscope, lift the aorta, and see if it makes a difference.  If it does, they’ll stitch it to the back of her chest, and things should get better.  We haven’t explored the “if it doesn’t” possibility.  Piper’s been warned that she’s not allowed to go there.   

The absolutely, bar-none, yuckiest, worst and most nasty part of it all is that, in order to do the repair, they’ll have to completely open her chest and break her sternum.  It really threw me a curve ball.  They had talked about going in between her ribs or something, but that’s not an option.  I’m pretty much horrified at the moment at the prospect of it all.  It really came as a complete shock.  I figured it was a relatively small procedure, not major surgery. 

The cardio said that he’s really not wanting to go in there and do it under these circumstances, because we don’t really know what the outcome will be.  They’re nervous about not “knowing”, and also doing it all to her when she’ll have been intubated 3 times in 5 days.  However, he also feels like the other two stenoses are results of this, and that by clearing this, it may correct all the issues that are going on in her airway. 

So, I guess that we’ll just pray that it goes smoothly and as planned, and works, that she does well with the anesthesia, and that we can go home by the end of the week next week. 

It’s been a long day.  I’m going to make Luke stay at the hospital tonight so I can go home and get a little sleep.  And pick up some clothes and food for the next few days.  Hopefully this weekend can be fun for Piper; we’re going to try and keep her moving, build up her strength again after being NPO for two and half days, and make the days go by quickly.  So, all the fun we’ll be having should surely lead to some cute pictures.  For now, how stinking cute is she???

Thursday, September 16, 2010

…and the drama continues…

The schedule from last night:

11:00- go to bed

11:55- cares with primary nurse

12:10- cares with CA

12:50- kid wakes up screaming

1:45- kid wakes up crying.  I cried.

2:30- kid wakes up.  Again.

3:30- nurse wakes me up to try and feed Piper while she can.  Result was unsuccessful.

4:00- cares with primary nurse.  After so many times going to sleep to be woken up a few minutes later, I’m UP from this point on.  Decide to do sudoku.  In the dark.

4:15- cares with CA

5:00- Piper’s up.  Bright-eyed and bushy-tailed, and looking for breakfast.  <<sigh>>.  At least she made it happy- she was laughing, talking, and blowing raspberries. 

Unfortunately, when we tried waking her up at 3:30 for something to eat so that she could be NPO for 8 hours prior to the MRA, she was going to have nothing to do it with.  She never even opened her eyes, and just kept looking for a place to put her head down.

So the opportunity for nutritional fulfillment was missed.  Which was going to make for a very fun morning of waiting until noon. 

We decided to take a walk around the grounds to try and waste some time.  We cleared it with the nurses, of course, and we left.  We came back about an hour later because I was hoping Piper’d take a nap, only to find out that we were going to be quarantined to the ward because the doctors were so worried about her airway that they didn’t want her to go into distress somewhere else in the hospital.  That’s reassuring. 

Piper really did fairly well, a lot better than yesterday, with the NPO bit.  So that was a nice reprieve. 

For the MRA, they had to give her TWICE the amount of anesthesia they did yesterday to get her asleep enough to be able to control her breathing- for this test, they have to hold her breathing at precise times to get the best pictures.  So she was one groggy girl this afternoon.  She got to eat dinner at about six (so she still went 22 hours without eating), so hopefully she’ll be happy the rest of the night.   

The ENT docs did rounds this evening, and we got absolutely ZERO new information.  They said that the MRA hadn’t been read by the radiologist yet, and Cardiology hadn’t made any recommendations yet, because they wanted to wait for the echo that’s scheduled for “sometime tomorrow”.

So, I guess the plan is still very much up in the air.  There’s talk about transferring us to the cardiac floor tomorrow, if they keep us, which I’m a little bummed about because I have LOVED the nurses on this floor.  But at this point, no one’s committing to us staying or coming back for surgery later on.  The nurses all seem to think that we’ll be sticking around until at least the severe part is cleared, but any time I ask a doctor, it’s the “let’s see what the ________ team thinks” line.  I don’t think that anyone is willing to commit to anything. 

After the second intubation in two days, she sounds pretty dang nasty, so that may up our staying power.  But I guess we’ll see.  I’ll be pretty surprised if we get to go home, but my own bed would feel kinda nice.  Pros and cons to both, right?  Just so long as they think she’s safe, I guess.

Thanks for keeping Piper in your thoughts!!!

Wednesday, September 15, 2010

The Rest of the Story

It’s after 9 now.  That means that I’ve spent the last five hours trying to calm down my child who’s hyped up on drugs, in pain, exhausted, and STARVING. 

Yeah, it’s been GREAT fun.

She was FINALLY able to eat after 7 tonight, at which point she screamed every time I tried to skooch the plate away from her (after an HOUR of eating).  She ate a BIG serving of macaroni and cheese, a cup of canned pears, a half a cheese quesadilla, and a cup of ice cream (of course).  Plus milk.  When she finally started eating, it was the first time she stopped crying all afternoon. 

She looked at us with the face of “And WHY has it taken you SO STINKIN’ LONG TO FIGURE THIS OUT???”. 

We’ve walked the halls of this part of the hospital more times than I can count as we waited for The Magic Hour to come when she could eat.  And of course, that meant that WE couldn’t eat until then (okay, after then), either.

She’s finally asleep now (alleluia), but we’ll see how long that lasts (can you sense my tears???).

The best part of the whole thing?

We get to do it all again tomorrow.

She has to be NPO for the MRA (the scan that’ll look to see if it’s really a vessel surrounding her windpipe) tomorrow, too, which is scheduled for noon.  So, she can have something to eat at 4am, and that’s it until after the test and recovery.  Gre-e-e-eat.

BUT, we did have one last bit of GREAT news- her ABR (the hearing test) came back PERFECT- NO hearing loss!!!  NONE!!!  I’m really, really glad.  I really doubted that she could have a loss in the midrange because she listens so well and follows directions.  But I kept preparing myself that she could have issues in the lower and higher tones, because it’s a lot harder to figure out what she is and isn’t hearing there.  But now, we don’t even have to worry about it!!!  WOOHOO!!!

I have no idea how long the MRA is supposed to take.  But hopefully by early afternoon tomorrow we have a better idea of what’s ahead of us. 

For now, I’m going to go and put on my comfy clothes, which I’m so glad I brought, and watch a movie.  With my mom- ‘cause we’re going to have a three-generation slumber party tonight.

Surgery Update- YIKES!!!

So, the ENT just came out and talked to us- he was all done with his part (the scopes and looking at her ears), so now we’re just waiting on the ABR to be finished before we can see her. 

Best news first- NO tubes!  I KNEW it!  I couldn’t figure out how she could have NO ear infections and have fluid.  He said they looked PERFECT!  Woohoo!

Now on to the NOT so good news.  She has 3 (count ‘em, folks- THREE) points of narrowing in her airway.  All of which he’s blaming on her being a preemie, and being intubated so many times on a preemie airway.  The least severe is the voice box- it’ll be a quick fix where they can “snip” (don’t you love those technical terms"???) some of the tissue. 

Then a little below her voice box is another, more moderate, stenosis near her trachea.  This one he figures he could do a little balloon to inflate the area and enlarge it, so although it’s there, it’s not a huge deal.

The third one, though, is pretty severe.  It’s in her windpipe.  He showed us pictures, and it’s pretty scary. 
There’s no hole where a hole should  be… 

It looks like there’s probably a blood vessel that’s wrapped around her windpipe that’s doing the constricting.  If that’s the case, they’ll go in and try to “lift” it off.  But, in order to figure that out, they’re admitting us overnight, doing an EKG and a heart ultrasound tonight, and an MRA (magnetic resonance arterial) tomorrow to see what’s going on.  Then we’ll make a plan after that.  It doesn’t sound like they’ll let us go home until they can figure out how to release the most severe narrowing. 

Once we get that one fixed, we’ll come back and have them fix the other two. 

So one couple of hour “in-and-out” procedure has turned into a several day fiasco.  But, on the upside, at least we won’t have a kid at home with a severely compromised airway. 

The OR just called and said that we had at least another 40 minutes or so for the ABR (the sedated hearing test, for those fortunate enough to have never dealt with it).  Once that’s done, they’ll send us to recovery for a while, and  then up to a room. 

Good thing I packed a bag, just in case, with my clothes.  And toothbrush.  I like having my toothbrush…

And now, for some eye candy…  Thankfully they have a really fun play room to use when you’re waiting for the anesthesiologist to come and get you.  The scrubs they gave Piper were only about six inches too  long in the waist, so I made the executive decision to put her back in her clothes to play in.  Piper had a B-L-A-S-T!!!

Monday, September 13, 2010

I think Piper may become the new Jack-Jack

September has been affectionately dubbed “The Month from Hell”.  But I feel guilty thinking that, so it’ll be our little secret, okay?

We have three BIG appointments at Children’s in less than three weeks.  Thursday, the following Wednesday, and then the Tuesday after that. 

Wednesday this week is Piper’s bronchoscopy, tracheoscopy, and laryngoscopy, possible ear tubes, and ABR. 

Yikes.  I’m totally freaking out about it.  TOTALLY.  I feel totally guilty because I actually hope that they find something.  I mean, really- if they find out that she does have some kind of stenosis, which seems to be the most likely cause, and it’s minor, then we'll get the “watch and see” orders.  Which I like.  I’m afraid, though, that if that’s not it, they’ll order more things, and that the ultimate result will be scarier than just a narrowing airway.  And by the way?  Hearing that your kid probably has a compromised airway is not exactly fun.  I mean, it’s just breathing, right???

Anyway, back to the point, I’m not in the mood to go on Wednesday.  And to make matters worse?  They called this morning and told me that they won’t get her in until 1:45.  And that my kid isn’t allowed any food or milk after midnight.  “But apple juice should fill her up”.  Yeah.  Right.  That’ll happen.

I had a breakdown to the nurse on the phone as I tried to wrap my head around getting my 13 pound kid to skip TWO meals, in a row, without losing my (or her) mind.  This is my kid who utilizes her calories so efficiently that she can eat like  a 20 pound kid and still only weigh 13 1/2 pounds. 

Yeah.  This’ll be fun.  I’m still mad at them- I’m not sure how they expect us to do this.  I’m hoping that, once we get to the hospital at 11:45, she’ll either be distracted enough to forget, or that she’ll freak out enough for them to do something about it.  Maybe I’ll have the nurses sit and deal with her as she turns into Jack Jack in The Incredibles.jack jack

So, anyway- think good thoughts for us, and our sanity, through Wednesday.  I can’t WAIT for it to be over!!!

Thursday, September 9, 2010

Peeping Piper

Piper’s discovered that she can stand up on things that don’t have a ledge for her to get her hands on.  She’s really quite skilled at it these days- the walking of hands up a surface as her legs slowly push her up.  You know, because my kid has to be 100% in control of her body.  At all times.  Period.

She yelled at me this week.  Literally.  I had a ticked-off, mad-as-all-get-out, flabbergasted in awe, little twerp.  Why?  Because I had the gall to take a shower without her.  So as she was explaining to me why she was mad, she decided to stand up on the glass shower doors.  Unfortunately, that means that I couldn’t get out of the shower.  Yeah, that was fun.

But the most fun thing she can do with this newly acquired skill is watch the dogs as they play outside.  She’ll stand and look out the window for as long as the dogs are out.  She laughs at them, yells for them to come to where she can see them, and kisses on them through the glass (ew). 

Someone please explain to me why my child’s favorite toys the last few weeks have been boxes of tissue, screen doors, lint rollers, a box of ribbons [that’s still sitting on my coffee table begging to be untangled], flexible measuring tapes, pieces of paper…  And then, if you could please explain to me why, exactly, we continue to put money into new toys.






Tuesday, September 7, 2010

In pursuit

The weather is (finally) starting to cool down here.  One thing that does mean is that the number of weekends available for dog baths is quickly dwindling.

It’s not my husbands favorite weekend pasttime.

But apparently it’s becoming one of Piper’s. 

P1070754She heard the bath water running, and flew down the hallway.  Screaming to make sure that her father didn’t start without her.

And much to the embarrassment of the dogs, and frustration of her dad, she “helped” (for the 2.5 seconds before the likelihood of the dogs jumping out of the tub, soaking wet and covered in shampoo, was higher than the level of fun Piper was having). 

P1070757I’m pretty sure Piper was asking if she could get in with the dogs.  You can see how well that request worked out for her.  You can also see Maggie begging for me to not post pictures of her in the bathtub.  She’s a very modest dog.

Monday, September 6, 2010

Poor, Poor Piper

You feel bad for her, don’t you?

Who knew that a lint roller could make such a funny (for me and my mom) toy???



P1070704 P1070705 P1070707

She’d try to get it off one hand by pulling it off with the other- at which point the second hand, obviously, got stuck.

It was a vicious cycle.

And viciously hilarious.