Tuesday, June 9, 2009

Cutie Pie joins the WWF

Don't they say that sometimes your best trait, is also your worst?

Well, that would apply to Harlie. She is one stubborn, feisty little girl. Today has been a true challenge. I don't think I could say she's doing "well." I mean, medically, in terms of what's going cardiac-wise, she may be doing well. But on the outside, she has had a ROUGH day.

I think she has changed positions every two to three minutes all day long. They've pumped her full of all kinds of drugs, but none seem to be making her comfortable. One doc suggested that maybe it was too much and that's what's agitating her. I think I might agree with that. He said that he's afraid to keep giving them to her because he doesn't want her to stop breathing. Good reason.

But, literally, someone has had to stand next to her, at times holding her down. ALL DAY LONG! And I am not exaggerating. Her nurse (and the nurse of the child next to her) have had a major work out today. They are exhausted and one just said that when she gets home she's going to need a drink. I tried to tell Harlie that she's going to develop a bad reputation.

Harlie is trying her best to sit up (and then falls asleep and falls over) and stand up. They said that they have never seen a child so active on post-op day 1. After hearing "world's worst scarring adhesions" and "almost never unheard of" Tom said she is an overachiever.

Here are a few pics of her many positions.

Today, she has signed "down" and tried to take her trach collar off (what she does in the morning when she's ready to get out of bed). And then "all done" and "shoes." Do you think she's trying to tell me something?

All kidding aside, they have been worried all day that she's going to pull one of her tubes or lines out. She is truly wild and just will not settle down. One nurse said that her name would be Cutie Pie in the WWF (World Wrestling Federation). It has not been a fun day for us (not that any day in the hospital is fun). But one thing I've noticed about myself is that when things get hard for me to see or deal with, I escape by talking about some funny movie or show or something. I've done that enough times now that I completely recognize that I'm doing it. But, I suppose we each have a coping mechanism. Mine's just kinda weird and makes me look like someone who doesn't have a grip. But, unfortunately I do.

They said that they are going to try Dexmedetomidate to see if that calms her down. I've never heard of this drug and might have to do some looking to see what it's about. I know they don't want her to wake up tonight, but first thing in the morning, I want them to take her off all these drugs. The more I watch her, the more I am thinking I agree with the doc that suggested maybe the drugs were the problem. She's signed "glasses" a few times (which is what she says when she's outside and wants her sunglasses. She is very light sensitive so she wants to wear them.) Then I think she signed "squirrel" which tells me that maybe she's dreaming or hallucinating. I think I would rather her be in a little bit of pain than be confused and anxious due to the drugs.

Looking back on the day, it seems the more drugs they gave her, the worse she became. And maybe if she felt a little more she wouldn't want to move around so much! And if she wouldn't move around so much, she would bleed less, so she could get the chest tubes pulled, which would mean she wouldn't need the drugs anyway! Kind of feels like we're running in circles, you know?

If they could pull the chest tubes tomorrow, that would help a lot. They said that they are more uncomfortable than the sternotomy (chest incision). They determine when it's safe to pull the chest tubes by how much they have drained in the past 24 hours. She drained very little Monday night, but all the moving about she did today definitely made her drain a lot more. The magic number is 100 mls (which is just over three ounces) in a 24 hour time period. Hopefully when we get there in the morning, it will be under that.

Well, it is late and the morning will come early. I will give an update after they do rounds in the morning. Hopefully there will be a lot of good things happening.

Thank you!


Susan said...

Oh man seriously she should not be moving around that much. Your logic about her needed to feel a little bit of pain so she stays still makes sense to me. I hope "Cutie Pie" gets some rest tonight (and mama).

Janis @ SneakPeek said...

Oh my...that has gotta HURT!! I hope they can get the meds squared away so she can be comfortable. I can totally see your dilemma, that is some serious positioning!!! Good night momma, btw you DEFINITELY have a grip, now worries there.

Grandma said...

wow!!! our little "cutie pie" has some I can't even imagine the pain she's feeling wth all those positions. I think I agree..maybe if she felt that she would move less. Give her hugs and kisses from me, murphy and cooper.

Heather Lewis said...

I am crossing my fingers that you are there right now being told that she drained less than the 3 ounces in order to get the tubes pulled. looking forward to the next update with good news!

Anonymous said...

I haven't posted at all since the surgery. We are so disappointed for you and wonder along with you what the next "year or two" will bring. We also celebrate with you the amazing personality and strength that carries each of (especially Harlie) this far! Thinking of you in Michigan! -Suzanne and all the Upton Clan.

Sandy said...

I know it is hard, but I can't help but smile a little at her strong determination and willpower. She is amazing and sometimes exceptional people can be challenging. You can't help but admire her.

kelly said...

Poor sweet girl! I've been thinking of you all and am glad that you and Tom got to have a bit of "you" time among these difficult days. I hope you all get some rest and that today is a better one for you all. Love that cutie pie is rocking her hair bow!

Kim said...

Moxy. That's what that girl has got.

It's her strength, will and determination that got her this far, and it's what will carry her through... but man-oh-man, I do not in one least bit envy what you're having deal with. Wish I had a magic wand to take it all away.

I hope you have a more relaxing day ahead, that she snoozes all day. They say sleep is often the best healer. I agree with you - it totally sounds like the meds are messing with her. I hope they get that straight so she can rest and recover.

Hang in there! (Like you have a choice, right?!) Thinking of you!!