And she's still in the cardiac ICU!
She did well on trach collar all day yesterday. But for some reason they put her back on CPAP in the middle of the night. But only for a little while. So, she's been on trach collar now since the wee hours of the morning.
Yesterday afternoon she fell asleep around 4pm and slept very soundly (like the best sleep I've seen her have since getting here). When I left at 8pm, she was still sleeping. And she's been sleeping a lot today, too. I suppose with all her work of breathing she's just tuckered out. I hope that's the case anyway.
The plan was to move her to the floor today. They came in today and pulled the central line out of her chest (it went to her right atrium). So, now she can move about more. Ever since they did that, she's been sleeping. So, I still haven't been able to pick her up.
But, they said they are still not comfortable moving her to the floor today. Her secretions are VERY thick and they think that she's too much for the floor to handle today. I found out that the room she was getting on the floor (because her move to the floor had already been set into motion before they changed their minds) was a double room. Maybe with any luck, another night here in the CICU will give them a chance to discharge more patients so we can get a private room.
Last night we had another visitor! It really is such a highlight of my day to get a visitor from home. My friend Lindsay, who just happens to live a few houses down from us, had to work in Maryland and McLean (Northern VA) and she stopped here to take me to dinner. Unfortunately Harlie was sleeping the entire time Lindsay was visiting her. But it was so wonderful to get out! And for the entire time we hung out, I felt like me again.
I feel like I'm in a whole different world when we're at the hospital. And I feel like a whole different person, too. When we're home the complexities of her medical conditions aren't so much in my face. Of course the day-to-day stuff of trach care, and therapies are there. But it's easier to forget about the really serious stuff when we're home. And I have to try to forget about being at my house with my kids and my husband, because I can't live that life now. I have to be here. And to think about how much I miss our life at home makes being here that much harder. And honestly, Harlie's a different little girl when we're here, too. She's mad and she really takes it out on me, especially. And, quite frankly, I'm tired of it. I will be so glad to get back to our life at home. And hopefully that will be soon.
Speaking of visitors, my friend Jennifer came up today. I feel so bad that my friends have to go to such lengths to come and visit. And I am so lucky that they are willing to do so! I don't know that Harlie feels the effects of visitors as much as I do. But I have a feeling that will change as she gets older.
Well, it looks like they want to keep her here for 48 hours after she's been moved to the floor - just to make sure she's okay and back on room air (assuming that will happen in that time frame, which I know I shouldn't do). So, hopefully we'll be able to go home on Saturday. Hopefully.
Thanks for checking in!
~Christy
Wednesday, June 17, 2009
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5 comments:
I know Saturday (hopefully) can't come too soon for you. I am glad to see she is getting rest. I am sure she needs it. Hope things continue to improve.
Hi! I wish it were under better circumstances, but it was so good to see you both. You're awesome - seriously - so on top of every detail, such an advocate for Harlie, and a great friend. Did Harlie end up liking her Magna Doodle? Hoping for a good night tonight!
I'm so glad she's finally getting some good rest! Crossing my fingers that you'll be home over the weekend. We're headed on a mini-vacation so I may not be able to check in until we get back. Hopefully by the time I do she's doing great things AT HOME.
Aww. Bless her little heart. Sending lots of hugs your way. Praying for a swift recovery so you can get home too.
www.caringbridge.org/visit/margaretreed1
Christy I was wondering if they can or have tried to place a PICC or Hickman line, some sort of "permanent” IV access so they don’t have to keep poking her?
I'm sorry its so tough on you right now. My surgeon is in Pittsuburgh (about 3.5 hrs from where we live in Ohio) I feel like I'm leading a "different life" when I'm in the hospital for weeks, too. Even harder for me when I get home sometimes my husband acts like I was on vacation and he has had to be a "single parent" and expects a little to much too soon. (I have a great husband, who is an awesome father don't mean to make him sound bad) I didn't mean to complain to you just trying to say I know what you mean. You are not alone. Thank you for sharing. Blessings to you and Harlie
Leighann Sturgin
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