Friday, April 5, 2019

She's off the vent!!!

Y'all.  Elle was extubated today and came off the ventilator!!  

She had a great night last night and was looking good this morning so they said, let's take that breathing tube out at 1:00 and so they did.  It's been about 8 hours and she is flying steady.  She started having a bit of a tough time at one point this afternoon but after some very.very intense breathing treatments (that she will continue to get every 4-6hrs), she started looking way better.  Then tonight she had a small choking and coughing episode but she recovered with some suction and sitting her up and since then has done just great.  

She is on a high-flow binasal cannula that pushes air into her nose to give her a little boost as her lungs are still trying to heal.  She will continue to get the intense breathing treatments as long as she needs them.  They are really awful to watch but they work.  And if it keeps her off the vent, then we are all for it.

She spiked a rather high fever just an hour after her ET (breathing) tube came out, which caught everyone by surprise.  We finally got it down after a few rounds of meds and making the room frigid and she has been acting like Elle-belle.  :) So we are keeping a close eye on her of course but are so hopeful tonight.

She has looooved having that ET tube out.  She is trying to sit up and is laughing and playing and being silly and trying so hard to talk.  Her vocal cords aren't working quite yet but she is mouthing the words and doing such a good job!  Honestly, I didn't know what things would look like on this side of things, and while she is still very weak and can't eat yet, we are seeing all so many of her usual mannerisms and she seems mentally to be back where she was before getting sick.

One hard thing is that her vision is gone.  She has had very bad vision for awhile now and we could tell she was losing even more of her vision pretty rapidly the past month or so, and it seems she has pretty much lost all of it at this point.  There are times she startles easily and sometimes I think she is trying so hard to search for and see something.  She will adapt and be okay, but I hate seeing her struggle.

She also is on 4 rounds of a steroid to help her lungs out and this makes her shake uncontrollably and get restless and aggressive and just amped up.  This is not fun. I will be glad to have that gone tomorrow.

All in all, she is doing really, really well and we are so thrilled!  Maybe we will get to move to a step-down unit this weekend, but we will probably still be here in the hospital for a few more days.

On a different note, Ann Carlyle has performed her school musical, Beauty and the Beast, 3 times now and still has 2 more performances to go tomorrow!  It will be a busy and awesome day for our birthday girl with many surprises from us and many more from so many of you!!  Thank you so much for showing her so much love and care.  

I was supposed to go to the play tonight but had to stay with Elle in light of today's activities...but by all accounts, it is awesome!  She plays a villager/servant and I am hearing from multiple sources that she is a dedicated actress.  :) I am planning on going tomorrow to see her.  I love it so much because she loves it so much.

The busy-ness factor has increased greatly since we have our wild-child back at it so I gotta go.  Much love!!!!
Dana






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