Thursday, March 15
My friend, Ann, flew from Arizona to visit me Wednesday and Thursday. For those of you who don't know Ann, you can read about her here. Once you know who she is, you'll get why this was such a big deal to me. Having her in front of me to talk to for hours and hours was absolutely wonderful. She made me feel so important and so special. And to feel that way is a pure blessing, especially during a difficult hospitalization.
Harlie sat up and smiled for a couple pics. That girl is so amazing. She really is so incredibly strong.
Thank you so much for going to all the trouble and expense to come visit, Ann! Love you!
Friday, March 16
Today her ENT removed her nasal ET tube, and switched the ET tube in her stoma to a trach. It is a stock trach for now, while we wait for the custom ones they ordered to come in. One of the ENT fellows said they were going to "Macgyver" it. I love it. Let's call it what it is. She also came in the other day and called Harlie, the Harlinator. Haha!
Anyway, it went really well. Dr. Preciado scoped her through her nasal ET tube and said her airway looked really good. He put a 5.0 trach in and they used twill ties to secure it around her neck. Surprisingly, they seem to be working ok for now. While her stoma is still lower than I wish it were, it looks better than I was expecting.
Her skin where they sutured the ET tube to her chest, took a beating. Her skin has gotten so sensitive to invasion.
Attaching the vent to her trach puts a lot of weight on it, and can cause too much pressure to the wound. So they immediately started working to get her off the ventilator and onto trach collar. She has done some sprints and has done well, overall. She is VERY sleepy still.
I think her eyes look a little better. I'm relieved to see small improvements there. Her face is now tape free for the first time in more than three weeks. Ahhh! That must feel so much better for her.
This morning we discovered that her BAHA (bone anchored hearing aid) abutment (the metal piece that is in her skull that the hearing aid clicks onto) was really bloody. It bled all day. It is so strange. We are guessing it has something to do with all the swelling.
Saturday, March 17
Today her lungs have some atelectasis (collapsed area). So, no trach collar sprints today. I am constantly reminded of our hospitalization in Boston, and find myself comparing the two, often. I remember it took a while to get her off the vent (maybe 3 weeks?). It was a constant dance of one step forward, two steps back. And that was after only eight days on the paralytic and sedation. This time around, she's coming back after 23 days on sedation and a little less than that on the paralytic. Crazy!!
She's had brief moments when she wakes and she communicates purposefully. And she's had some moments where she seems confused, like she's dreaming or something. I cannot imagine waking up after what she's been through. Even though she smiles for me on occasion, I know she feels like utter crap.
Tom came up yesterday afternoon. It is so much better when he's here. Oh, her BAHA stopped bleeding. Well, I guess I should say the area around her BAHA stopped bleeding. So, that's good.
Well, that's it for now. More later! Thank you so much for all the thoughts, prayers and gifts! I'm loving the love!!
Much love,
Christy xo
3 comments:
SO good to see her beautiful eyes! Glad you got some friend time as well.
I came looking for your blog today because I was wondering how Harlie was doing. It is so good to see her sitting up, even if just briefly. Sending you lots of positive thoughts and prayers from another medical momma in Virginia (we have never met but have mutual friends).
Sending love from country Australia. Your little girl is super and having such a sting family around her is awesome. Much love - down under
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