Elle Update: 4/9 Day 10

Hey guys!  Stiiiill here at LeBonheur but the wheels are in actual motion and the plan is to go home tomorrow for real barring any craziness.  Please pray for a boring night!  :)

Elle had to go back on oxygen last night again but since it was a low amount and because we have all the equipment and home health team in place, they are fine with her going home if we are okay with it.  (We are okay with it.)

And we really are ready to go home but there is a bit of anxiety that comes with it too of course.  Please pray that all goes smoothly but if something is off, we will be able to recognize the problem.  

So one of the biggies is her CO2 level.  It was ridiculously high - scary, life-threateningly high - the night we were admitted.  And it is still a little elevated.  This means that her lungs are not ventilating quite well enough - not that she can't oxygenate well enough.  (This may be too much information, but hang with me!) Bottomline, she will probably need a bit of oxygen overnight for awhile because that's when her body is the most relaxed...and that's when her CO2 level can rise as her lungs aren't quite 100% healed yet.

She still gets fatigued quickly doing anything, including eating.  While she is doing very well and can return to her original full diet, she isn't quite back to what she was able to do before, so we have to be slow and careful with her eating.  

We stopped one of her seizure drugs because it was causing another drug level to dangerously rise.  Her seizures were not great for a couple of days; she's not had too many today until this last hour and I've seen a lot of long ones.  And we may see some rebound from all the med changes in the following weeks.  Also, I think she's having some withdrawal symptoms from one of the meds which includes restlessness and trouble falling asleep.  Not sure when that will level out.

Her tummy is still very messed up from her antibiotic but she just has to take it through Saturday and then hopefully her poor bowels will return to normal.

So those are the specific things to pray for for her as we head home.  And please pray that it will be an easy transition home, that there won't be any hiccups with the home equipment and that we can quickly find our way to a new norm including frequent and extensive breathing treatments.  I'm not sure yet when Elle will be able to go back to school - please pray that she can get back in her routine quickly though.  

I think there are going to be a number of things that are going to look different moving forward with Elle, not the least of it, her lack of vision.  And it could take 4-6 weeks for her lungs to fully recover to 100%.  It's a thing we have to laugh about in the Batten community so you don't cry...juuuust when you finally get used to a new normal, the child changes again and you are thrown back into chaos and confusion, scrambling to figure it all out.  Only time will tell what significant changes we will be dealing with long-term.  But whatever that new normal is, we rejoice in God's goodness through all of it...the good, the bad, the pretty, the ugly.  He is the constant in our lives...His goodness never changes, never fades.

PS - Did I tell y'all she lost a tooth last week??  (It had been super loose so they pulled it while she was here.) I'm including a super cute picture of her new smile.  :)

Love you guys!

Dana