Elle Update: 4/4 Day 5

First of all HAPPY BIRTHDAY to my mom today!!!  She is a rockstar in about 4.5 million ways and we love her and appreciate her so much!!

Second of all, I think most of you know that Elsa and Frozen are her favorites - well, today, she has a nurse named Elsa!!  How cute is that?!

So all in all, we had a good day. But I'll go ahead and fill you in on the not-so-great.

We found out this morning that Elle has RSV.  RSV is a virus that typically happens with babies and can cause respiratory distress.  But with all things, in a medically fragile kid, common viruses can become more serious.  This actually was kind of 'good' news or I should say helpful news because the doctors had been scratching their heads a bit about how sick she still is, etc when nothing was growing with her cultures.  They ran a viral panel yesterday and the RSV popped up.  And it's probably the reason she started running fever yesterday.

She had a bit of a rowdy evening and was not happy about things, so we had to start some sedation back but it's a low-dose continuous drip and it seems to have worked well for her today.  She was much more restful today.

Her chest X-ray was improved this morning. Great news.

Infectious disease doctors said we are doing everything right medically and they are not alarmed by anything at this time.  Great news.

Her spinal tap from yesterday was clear and all good.  Excellent news.

Elle had her infusion done today.  More excellent news and we are relieved to have that done and in her brain.  All went smoothly - no complications at all.

I went home last night - it was super hard to leave - but my body was starting to kind of shut down from lack of sleep.  And I knew it would be good for Ann Carlyle and me to have some time together at home and a 'normal' morning before school with me there.  I didn't sleep as well as I had hoped BUT I did sleep better than I would be if I was at the hospital.  And even better, I had an absolutely wonderful, fun and beautiful time with her.  All we did was drive home from the hospital to Wendy's for dinner (because, frosty) and then home to eat, shower and go to bed by 8:30.  But our conversation was real and hard but needed and good and full of laughter and playfulness too.  I love when we can have our time together without all the distractions.  When she and I went to Birmingham a couple of weeks ago, we had some of this extra-special time.  I don't know how else to describe it but it was just some good, God-given time that I will treasure in my heart forever.  So thankful for it.

And Frazer stayed with Elle and slept in the bed with her which I think was great and special for both of them, despite the lack of sleep that Frazer got. :)

Ok...I can't sign off without shouting out some more thank you's because you, our community, are ridiculous.  Just so much awesomeness all around.  We thank God for you truly all day every day.  Frazer also wanted me to specifically tell you all how thankful he is for you and that even if we aren't able to respond to each message, call, email, note, etc., we are storing it aaaall away in our hearts and it has provided such comfort and sustenance for us.

Much love to you!  And may a peaceful and sleepful night be ahead for all of us! :)

Dana