Wednesday, March 30, 2011

Post-Op Day 2 - 2nd Update

Well, she's still on trach collar (not CPAP), so that's good.  But she's still on oxygen and when the collar goes awry and she's not getting as much, her sats drop.

Her swelling hasn't improved.  And I am bummed to say that I think it has gotten worse.  And that's not me freaking out, either, the nurse practitioner agrees.  Her ortho surgeon came by and said it was really tight.  She said they can split it down the middle a little to give her a little room.  But, once the diuretics start working, it will be too loose.  She would like to give her till tomorrow to see if she can lose some of this fluid.  She said she would let the ortho resident know that they might have to split the cast tonight if her breathing begins to be compromised.  I really hope that doesn't happen.  For many reasons.

The doc that's going to be in the CICU tonight just came by to have a look so he can have a baseline to compare to for the rest of the night.  I know she's in a hospital and that she's hooked up to monitors and that they will be watching her closely and that if she shows signs of distress they will just have to cut the cast - however - I will be a nervous mom going to sleep tonight.

I would feel better if the cast saw were bedside.  And the guy in charge of operating it were sitting right outside her door. I know plenty well enough how fast things move in a hospital.  And it is NOTHING like in any of the hospital TV or movie dramas.  Trust me.  By the time this person calls that person and that person pages another person and that person gets out of bed - she would be one miserable little girl.  Ugh.

They just administered her first dose of Oxycodone.  Hopefully that will help her feel more comfortable.

She keeps on communicating that she wants "up" and I think she means that she wants to sit up.  Then she signs that she wants to sit in the chair.  We put her in the chair, then she signs that she wants to be in the bed.  I think she's looking for a place that's more comfortable, but she's not finding it.  I put her in my lap while I sat in the chair and I propped her up so she's more upright.  But, she still signed that she wanted to be back in bed.  She reaches her arms up to me and stretches her little fingers out trying to reach me, wanting me to pick her up.  I lean down and hug her and she tries to pull herself up.  We've been through this before.  It appears that she wants a hug, but what she wants is for me to pick her up and then take her out of here.

She's breaking my heart.  Hopefully tomorrow will bring her more understanding about all of this.

Yep.  Different location, same position.  Sorry, Babe!!!
She did make some movement progress today.  We got her up and standing.




She wasn't able to support all her weight, we had to help hold her casted side quite a bit.  But PT brought a walker and she did understand to hold onto it.  She "stood" for about two minutes and then signed "all done" and they were happy with that.  Every little bit helps.

She also ate another 5-6 ounces of Pediasure today - very willingly, I might add.  Oh, what a great feeling!  I let her hold the medicine cup as much as possible.  I'm trying to give her as much control as I can.  It hurt me to watch her - she was shaking so badly!  But she was determined to do it herself, so I let her.  She really is so incredibly tough.  In so many ways.  Boy, are we thankful for that!

And earlier in the day we brought in the VECTA distraction machine.  We've used it before and it has really helped calm her down.


And they took out her arterial line.  That was NOT pretty, and I had to look away.  I was tempted to take some photos, because I'm demented like that (that's for you, Allie!).  But sometimes I want to share some of the horrible stuff I have to deal with - it makes me feel like I'm not so alone in all the yuckiness.  But, then I thought I could lose some readers.  Feel free to thank me by leaving a comment.

So, here's a photo after it stopped bleeding and was covered up.  But, I think you can tell how ugly it is underneath there.  And look at those puffy fingers!


And again, this has taken me forever to write.  There are so many interruptions in a hospital room!  So, that's it for today, I think.  Hopefully the diuretics will turn things around fluid-wise and she will get some relief without having to change the cast.

Thanks for all your support.  I love reading comments, so please say what you want - no need to be shy.  I'll update again as soon as I can in the morning to let you know how she did tonight.

Thanks!
~Christy

17 comments:

Josie Kurz said...

Hang in there tonight, I know it's so hard when she's your baby and there's nothing you can do to make it better! But we're all praying that she'll lose that extra fluid so the swelling can go down and she'll be more comfortable. It's great that she's losing lines left and right, that was always how we kept ourselves focused on the positive, another line gone. Hope it's a quiet night with no interventions necessary and that you ALL get some sleep.

Sending our love,

The Kurz

Tanya said...

I'm delighted to hear that she's had more fluids orally today. Wouldn't it be amazing if bringing home an oral feeder was an unintended benefit of this surgery?

That VECTA distraction machine looks *wonderful* For M's long ICU stay, before she could even focus on the TV, she would ask for balloons and just watch them. The VECTA machine looks like an even more wonderful device for the same sort of situation.

I can really relate to wishing the cast saw and the person who uses it was right there. Now. I won't share the story because it's not about M. Suffice it to say, I hope EVERYONE gets a very good night's sleep tonight.

Ann said...

Christy -- just wanted to let you know that I am checking in regularly and my stomach is sick just thinking about all that Harlie and you are going through. I sure hope the swelling goes down tonight. I'd be on edge too.

Oh, and this totally cracked me up:

"I would feel better if the cast saw were bedside. And the guy in charge of operating it were sitting right outside her door."

Hang in there .... and thanks for the updates.

Much love,
Ann

Jennifer and Elizabeth said...

Christy you simply amaze me. You and Tom and Harlie are so amazingly strong. I can only imagine what this must be like for all of you and the boys back home.

I'm so happy to hear that Harlie is actually willingly taking fluid by mouth, that is truly incredible given everything she is going through right now. I hope this trend continues.


Thank you for updating us all so much. I am thinking of you all constantly. I pray her swelling and water retention goes down very soon and that there will be no need for the cast saw or person to operate it.

((((hugs))))

Beverley said...

I can completely understand about wanting folks to see what we experience so that we are not alone in the yuckiness!

It is a 'boost' to be able to read the comments/encouragements .....we have our family to support us, but somehow our 'readers', 'fellow comrades in the journey' are so very important.

Loved the VECTA machine when Leyda was in last time.

Tell everyone on CICU that Leyda says Hi!

martin2704 said...

xoxoxoxoxoxoxo

Christy said...

Just wanted to let you know your sweet girl is still in my thought and prayers. I hope she has a restful night and the swelling goes down asap.
Much love,
Christy

Anonymous said...

Christy, your courage continues to blow me away. I hope the fluid will go down soon so Harlie can be more comfortable. It amazes me how strong she is being through all of this. Thanks for the updates. Hang in there! We're keeping you all in our prayers!
Anna

Sarah Gunn said...

Hang in there, you guys are handling everything so well! Harlie is amazing. I agree I would be a little nervous going to sleep tonight. Maybe you can get a cocktail and another delicious dinner and that will help? We'll be looking forward to hearing more tomorrow.
How are the boys doing at home? Was thinking about taking Charlie to CMoR in Short Pump tomorrow, want me to pick up Cooper too? We have a bunch of free passes. Call me if you do.
Sarah & Matt

B-Mama said...

Seriously, the stuff you all are dealing with--you are totally amazing! Tell that Harlie girl she is the toughest and cutest. I love hearing about her signing to get in a different position--poor thing. Can you imagine her delight upon losing the cast later on?!

Once you get the swelling under control, you are going to be in such a good place. It is so heartening hearing about the eating and "love you" triumphs. How fantastic!! Take those joys and run with 'em! :)

God bless you all. I'll pray for peace tonight, less swelling, and sleep for you all. Miss you around here!! xo

Brittany said...

Hopefully the morning sun will greet you both having had a great night's sleep (with the swelling down, of course!). Thanks for keeping us updated - you both are doing great!

Anonymous said...

Harlie continues to amaze us all. It's great that she is taking food/drink by mouth. And it was wonderful to read that she signed 'I love you' so soon after surgery.

I hope the swelling starts to go down overnight and that she's more comfortable in the morning.

Sending you more hugs and positive vibes.

Lisa B
Hampshire, UK

Rebecca said...

Christy,

What a strong and amazing little girl. She certainly knows what she wants. Good for her for standing up for any length of time. I appreciate the photos and glimpse of the process you give. Glad to hear about the oral feedings too. Hope last night was a good on all around and that she is less swollen today and much more comfortable.

Veronica said...

Harlie is such a brave little girl and I keep her in my prayers all the time!! I emailed you last fall... I have an infant son with Goldenhar and hypoplastic right heart syndrome. He is 6 months and I often feel like reading your blog is a glimpse into the future. Plus you are hilarious and love your kids so much, it is a blessing to read!

Heather said...

I'm so sorry that yesterday was such a rough day. I wish there was a magic something-or-other to make her more comfortable. hopefully today is a bit better with just a bit less swelling and a bit more comfort. and I don't really think there is much you could do to lose readers. . you are too good of a writer and there are too many people pulling for Harlie regardless of the procedure. thinking about you guys today as always.
love- Heather

Christy said...

Thank you to all of you! I really needed those comments last night and this morning!

Veronica - did I respond to your e-mail? I looked back and can't find anything in my e-mail. I'm wondering if it went into my junk e-mail? I'm terrible about my e-mail. So, I'm sorry! I hope everything is going well, and please e-mail me again if you want - christy (use the underscore symbol) holton at hotmail.com.

Veronica said...

Christy,
I didn't hear back from you but I figured you were just very busy! :) I just sent another email.