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…

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!  

Done!!!

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!

Wowie!!!

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!

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.     

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???