Monday, August 27, 2012

Post-op Day 3

Harlie was moved to the floor yesterday. Which is fine, really. The only negatives to the floor is that they don't allow cell phone use in the rooms. And I love how they follow that with a very positive, "but you have your own room phone you can use!" that doesn't make long distance phone calls, so that works great for us in from out of town (which must be a good portion of their patients). I just find that rule not family friendly. The other thing is that only one parent can stay (overnight, I mean) in the room. Now I do understand this rule especially considering the size of these rooms. There's really no way two parents could stay.

So, last night I stayed with her and let Tom go back to the hotel. The "bed" was horrible, not that I expected anything different. But Harlie had a "great" night and an awesome nurse. Seriously, she was one of the best we've ever had, including ICU nurses.

When we were moved to the floor in the afternoon, we got a nurse who is training a new nurse. Quite frankly, I think that's a great assignment to get, so I was really happy. And the nurse said the normal ratio is 4 patients to 1 nurse. But since Harlie has a trach she qualifies for 2 patients to 1 nurse. Awesome! I wish they had that everywhere!

Anyway, the day nurse said they gave Harlie the best night nurse, and they were not lying. Shannon was awesome! She worked her butt off last night and I didn't have to ask for anything. She said she works again Wednesday night and that she'll ask to get her again. Loved her!

We got the same two nurses from yesterday today, so that's great too. I have to say that I am super impressed with the quality of the nurses on the floor. So I am happy to be here. Plus they take vitals less often, so hopefully Harlie feels like she's being bothered less, too.

Here's what she looks like today:

She definitely can't open that left eye much at all, so I am really trying not to worry. I know, I need to be patient.
Her micro surgeon came by to see her yesterday and he said she looks really good. He said they still need to remove the drain lines from her leg and neck and put a cast on her leg. But given the trauma of yesterday, he said he wanted to give her a day off. So they will do that on Tuesday.

They are going to try the sedation thing again. I told them I think they need to give her more meds this time.

As far as how she's doing... She's getting tube feeds now. They started slowly to avoid constipation issues. Which I'm happy to say, it looks like we might have been succesful. She's peeing some, although she's not peeing as much as she should given the amount of fluids she's getting. I think the problem is that she is scared to sit on the potty, or it hurts to sit straight up. Probably a little of both.

She did indicate to me that she hurt. She cradled the right side of her face with her hand (the way you would do if you had a bad tooth ache). I asked her if she hurt and she nodded yes. Yes!!! Communication! What a good sign!

So they gave her some pain meds and they are going to give it every four hours. She seems to be more comfortable now.

Then, I signed and told her that I loved her, and I don't know if she was just groggy and signed it back out of habit, but she did - she signed "I love you" back to me!!! Woohoo!

She is a funny girl! She's hiding under a blanket, which is fine by me. And when someone comes in, she closes her eyes and acts like she's sleeping. When she hears them leave, she opens them again. She really cracks me up.

I forgot to tell you what Tom and I did on Friday while Harlie was in surgery. We kept trying to take the stairs, but the hospital is pretty confusing. So, we walked out a stairwell door that said "no re-entry, key card required." I, of course, questioned this, but Tom said, and I quote, "we're not going to get locked in the staircase, Christy." uh-huh.

We got to the bottom and it said, "emergency exit only - door will alarm and security will arrive within x-amount of minutes." I can't remember how long. Luckily, there was an intercom button, so we pushed it and security had to come let us out.

Oh, and I never told you about my hair. So, you might know that I've most likely lost my mind and I have some of my hair dyed pink. The girl who does my hair has to bleach that section and then I dye it when it fades (every 2 weeks or so). Well, Tom posted a pic on FB a few weeks ago that showed a girl with streaks of blue and pink in her hair. And he said "double dog dare you." So, when I went to get my hair cut on Tuesday, I took my pink (and newly purchased blue) with me. She dyed a section in the back (on the bottom, so you can only see it when I have my hair up) blue. I know, I've lost my mind. I'm so conservative, it's totally outrageous for me to do this. But I have no career, so why not?

Well, as she washed my hair, she said, "so, that blue dye? Is green." I said, "you mean turquoise?" and she said, "no, I mean green."

And then I saw it. And it WAS green!!! Very green. Like Halloween green. Nice. Totally not the impression I want to give up here to all these people that don't know me.

So, last night Tom went back to the hotel and I stayed here. Then he got up and worked out, then came here. Then I left and ran 3.5 miles (I've run 3 out of 4 days since we've been here!) and went back to the hotel and dyed that green patch pink and now it's brown or maybe purple-ish, so the green is no more and you can barely see any color at all.

I've been having some technical problems lately. My computer's charging port is broken, so I can't use it to update my blog. So, I have to use the iPad, which is really hard to blog on. It doesn't view the blog right, so after a certain point, I can't see what I'm typing. It has been very frustrating. But Tom downloaded an app that makes it SO much better! YAY Tom!

Okay, I think this has been long enough. Please know that our spirits are good, all things considered and that all of your messages of love and support have helped us tremendously! We are so thankful to all of you!

And the boys have been having a great time with Tom's family in Pennsylvania. They've been to a water park, the great lakes in Erie, the children's museum and the zoo in Pittsburgh. So thank you Mary Ann, Kristie, Nathan, Tayne and Amanda!!!

Much love,

Christy xoxo



Donna said...

I'm so glad she signed I love you...groggy or not, I know that did your heart good :)

AND, I'm SO glad you have good nurses - pretty funny how that can have such an impact on you, huh?

Love all the pics of the boys on face book - they look like they are having a great time!


Anonymous said...

I am so happy that things are going better than expected in Boston. I don't know how you guys do it. Our thoughts and prayers are with you guys always. Get better soon, Harlie. Keep that feisty spirit little one.
Love from Pgh. Sue and Ron

Susan said...

Hooray for great nurses! I'm glad things are going well. Don't worry about her eye. It's typical that it takes a week or more for the swelling to go down and the eyelid to fully open. At least for Ainsley.

It made me smile hearing about Harlie hiding and pretending to be asleep, but it also breaks my heart a little. She's smart, that's for sure. I'm glad you can be with her on the floor. (I'm always the one who stays with Ainsley.) XOXOXO.

Veronica said...

What! No cell phones in the hospital room? Are they living in 2012? We even got to use cell phones in the CVICU, as long as they were on silent.
So happy to hear about getting good nurses. That makes all the difference. Heal up Harlie, praying for you!

Lisa B said...

Glad to hear that Harlie still loves you and that the nursing on the floor, so far, are a good fit for you. I hope she has a quick and easy recovery.

Lisa B

Anonymous said...

Oh my Christy you are such a STRONG STRONG woman and we feel so blessed to have your entire family in our lives. Hope you got my text an know that we have been checking in on you all on the blog. Thanks for all the update. XOXOX Marcy, Mike and Kaden