…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!!!

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!!!

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.

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

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.

Hmph.

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. 

She 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). 

I’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.

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???

  

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.