When I got to her room this morning, she was in her wheelchair! She sat up for about 10-15 minutes, which is great!
But she is less communicative than she was yesterday. Barely motions yes, or no. She's not using her hands at all. Its as if her arms are really heavy. Same with her legs.
It has been a busy day already, with occupational and speech therapy coming by. Someone also brought a therapy dog. Harlie didn't seem to care at all, which is very unlike her. She didn't even want to look at the dog. She didn't want to interact at all with OT or ST. I asked her if she was mad and she shook her head no. But I don't believe her. How could she not be mad?
She is off Morphine completely and they turned off the Dex.
At around 11am, they took her off the vent and put her on trach collar. She coughed up tons of secretions non-stop. Bubbly secretions came out of her mouth, which is a good sign that air is getting past her trach. Her nurse and I literally never left her side, constantly suctioning and wiping secretions from her trach and mouth.
A bit after noon, I guess her body had enough and she started wigging out. She got really restless, wide eyed, purple faced, and sweaty. And she was reaching out for me. We watched her sats go down to 65 in seconds. She looked exactly like she did when she was on bipap last week, like she was frantic. I just can't describe how awful it is to watch her struggle to breathe. If I didn't have PTSD before, I can promise you that I have it now.
They put her back on the vent and she still appeared to be gasping for air. Her mouth opened for every breath. It has now been an hour, and she is still purplish/red. Since she's not on anything for pain (except Tylenol) they were wondering if that was a contributing factor. So, they gave her some Morphine and Versed. And they are going to put her on Oxycodone. She never complains of pain, so we can't count on her to tell us.
It has now been over an hour and a half, and she is finally settled and appears to be comfortable again. They have decided to slow things down a bit. She isn't going anywhere anytime soon, so there's no reason to push her so fast.
Its now almost 5pm and it has been a busy day with lots of docs coming to visit. She's watching tv, which is a nice change. Never thought I'd say that!
They are getting ready to move Harlie to a bigger room, still in the CICU. When she had that episode earlier today, this room was full. So a bigger room will be nice. Plus, we are right by the main doors to/from the unit and it is very busy and noisy. Doing rounds with people going in and out in the middle of it is not ideal. So, I'm not sad we're moving.
Whew, I am wiped out. Too tired to write anymore. My sister is flying up tonight. So, I'm looking forward to seeing her.
I wish I could thank everyone individually for all you've done. The words of encouragement, kind comments, texts, messages and very generous donations are appreciated more than I could ever say. Being able to focus on Harlie and not worry about how we are going to pay for this is a true gift. Thank you from the bottom of my heart!
Much love,
Christy xoxo
Friday, August 18, 2017
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Liver Update
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3 comments:
You have no idea how much I want to jump on an airplane to Boston just so I can give you a hug. I've been on the verge of tears all week - this set back for Harlie has really touched my heart. I know she will be okay and so will you, but I hate that you find yourself back in the trach world. I'm glad you will have your sister's company this weekend. You have a great support system. As for those of us who can only watch from the sidelines, I wish I could do more than just write words of support. Just know that you and Harlie are in my heart and my thoughts constantly. xoxo
Sending love and light and thinking of our girl nonstop...
Thinking of you all and praying that Harlie recovers aa quick as possible. Watching them struggle to breathe is just the worse thing ever :( Lots of love to you all, Bea (mum from trachy board) xx
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