Elle Update: 4/1 Day 2

Y'all are so awesome - thank you so much for the outpouring of love, prayers, support and willing hands!!

We are Day 2 in the hospital.  Elle is still intubated and in the PICU.  However, her chest X-rays are looking great and the lab results relating to her breathing function are great too.  They tried to wean the vent a bit last night but she didn't tolerate that well so they put her back to her original settings.  But we weaned the pressure from the vent juuuuust a little a couple of hours ago and she's doing great.

She still has her chest tube but it is barely draining anything so if she continues on this path, they will pull it out in the morning.  (I feel a side stitch every time I think of the chest tube - I've never had one but I've heard they are brutal.)  So I am super excited to get that out of her, as I'm sure she is.  Also it's one more tube that is preventing me from holding her and that makes me so sad.  I literally have not not held her in my arms for this long in 7 years unless we were in different cities.  

Elle's infusion is scheduled for tomorrow but as of this hour, there is a debate over whether to do it tomorrow or in a couple of days.  So she should get her infusion this week but not sure which day yet.

This morning, she gave us a little scare because she was utterly unresponsive to any kind of stimuli for a few hours.  They did a CT scan of her brain to make sure nothing was being missed and then an hour later, Elle woke up and started responding to some of my questions, nodding her head, opening her eyes, moving around and grabbing my neck for a chokehold hug.  It was awesome.  Frazer said it was Elle's April Fools Day joke. :)

(Oh and the CT was fine.)

She's had a pretty good day and was responsive multiple times today.  Her cousins were up here this afternoon and she smiled so big playing with them!  She actually smiled big with that tube in her throat!  (Cousins are the best.)

She's struggled a couple of times today with coughing, gagging and pain and we've had to give her some pain and sedative meds here and there.  She seems to be getting more uncomfortable the past hour and her tummy is messed up a little too.  Meds are on board and we will go one step at a time.  Her medical team has been wonderful here and we feel listened to and really heard by them and they have been very forthcoming with information which is such a gift when you are a hospital parent.

All in all, she's had a pretty good day.  She is getting better slowly but we are headed in the right direction and that's what is important today.

Tomorrow morning we should get a couple of lab results back that might help clarify some of our treatment decisions.  Please pray that we get those back as the implications could be  a such big help moving forward.

Ann Carlyle seems to be doing well.  She was perky and happy at breakfast when I talked to her and she had a good day at school.  I talked to her again a bit ago while she was at dress rehearsal and she told me, 'Mom, I have to make this quick.  I'm in the middle of a costume change.'  There was fun and delight in her voice and while she had a couple of worries during the day about Elle, she is doing well.  But of course, please pray for the processing of all of this.  (And her school is just the best place and the support for her is amaaaazing - thank you CMDS! And even more awesome, her aunt is the counselor there -  the love there is for real.)

Oh - thank you to all (friend and stranger) that have asked what they can do for Ann Carlyle to make her feel special this week for her birthday.  I mean, you make a momma's heart melt!  Honestly, a bunch of birthday cards would make her so happy. That would make her feel seen and loved.

Please continue to pray for Frazer's dad - they are still in search of answers for his pain.

Thank you again for all your words and acts of support - we are feeling the love!  I'll update when I can tomorrow.  Much love from all of us- 

Dana