5/3 Update

Hey all - Elle had to be intubated around 4am this morning after a very long and distress-filled night.  Elle got into respiratory trouble pretty quickly last night after I sent the last update.

She is mildly sedated and has been made very comfortable today for the most part.  She has finally gotten some rest that she needed although she is still very, very sick.  Please pray for a stable night tonight specifically.

We are so grateful for you, your encouragements, your support, your prayers, your love.  

Rock of Ages, cleft for me - let me hide myself in Thee.

Dana

5/2 Update

Hey guys - so we are still in the PICU for tonight.

Viral results came back positive for adenovirus and parainfluenza virus.  Basically a couple of viruses that may not even affect me and you but for her, it can cause pneumonia and breathing problems.  So those yucky bugs are our culprits.

She made a little progress on her oxygen needs but not as much as we had hoped for today...but she is still on the high-flow binasal cannula that she has been on.  Her chest X-ray looked about the same as it did when she got to the hospital yesterday.

She has a super low platelet count and a couple of other things in her blood work that are 'off' but all those things are probably due to infection.  They are keeping a close eye on things though.

She feels pretty crummy and needed some morphine this afternoon to take the edge off of her pain...it worked well so I'm glad she has something that helps her rest.

She's not the most stable respiratory-wise in the last hour or so.  I'm waiting on the doctor to come in and look at her.

Please continue to pray for Elle's comfort.  We cannot stand to see her in so much discomfort and pain.

Thank you!

Dana

Elle is sick again :(

Hey guys.  So we are back at LeBonheur as of about 11:00 this morning.  Elle hasn't been acting 100% the last few days but started getting a lot of chest congestion yesterday afternoon.  Her lungs got really junky and she had some diminished breath sounds primarily on the side where she had all the pneumonia and chest fluid a few weeks ago.  We put her on oxygen at home last night, did extensive breathing treatments and closely monitored her.  This morning she got more and more labored with her breathing and then started to drop her sat even on oxygen.  She was pretty uncomfortable.

She has pneumonia but thankfully it is not a horrible case like last time.  We are still waiting on test results to see if she has a UTI, blood infection, etc. but I'm optimistic that those will be negative.

They have her on high-flow oxygen - she did not have to be intubated (put on a ventilator) and we are keeping her off of CPAP for now, although if she gets unstable on the high flow binasal cannula (that she is currently on), then we will have to step it up.

We are still down in the emergency room but they will be moving us to the PICU at some point  for the night.  So we will stay tonight and just see what is happening tomorrow...might move her to a regular room (non-ICU room) or go home if she is stable enough and her oxygen needs decrease.  But we really don't know what tomorrow will look like at this point.

Thank you for standing with us and continually praying for us.  I was able to talk to Ann Carlyle at school during her lunch break and she is scared.  We are too.  Pray that God's peace would envelope us.  I will say that Elle is much less sick than she was a few weeks ago, and hopefully she will continue to stabilize and improve quickly.

Much love!

Dana 

Elle Update: 5 days and counting at home!

Hey everyone!  I thought I'd pop in and update y'all on Elle since we've been at home.

Overall, her lungs have improved everyday.  She still has a bit of a productive cough, but her lungs sound great and the junk she is coughing up is decreasing.

She woke up Friday with her nose pretty congested but it hasn't developed into anything more than that (and she sounds better today)...except that she has apparently passed it along to me.  I think all the stress and sleepless nights are finally catching up to me and I'm fighting a cold.  It's not horrible but I just feel so, so sleepy and run-down.

Fortunately, everyone else is healthy!  We gotta get healthy and stay healthy because we have another big weekend coming up.  It is Easter weekend and it is also Elle's 7th birthday Saturday!!  Make-a-Wish is throwing her a mega birthday party Saturday and we are so excited about it! (Thank you to Make-a-Wish and all you are doing to pull this off!)

So Elle went to school today - first day back in over 2 weeks.  She was tired but wasn't fussy when I dropped her off so I think she was glad to get back to school.  She has her infusion tomorrow and then a day of rest at home Wednesday.  Friday is a holiday, so she will only go to school a couple of days this week which works out to kind of ease her back in to her schedule.

She is definitely weaker overall than before she got sick.  She is eating well (the action of eating) but she has a significantly decreased appetite.  Her antibiotic finished yesterday which may very well have been affecting her appetite, so we will see if her eating picks up as the week goes on.  She had a couple of days of increased seizure activity but we adjusted one of her meds and that seemed to do the trick to bring the seizures back under control relatively speaking.  She's had a few frustrating and/or upsetting moments this weekend but mostly she has been giggly and happy...for this, we are so very grateful.  

Our weekend night nurse position is still not filled and our substitute nurse didn't show up this weekend - please pray that this gets resolved quickly.  We have been waiting on this position to be filled since January.  (Speaking of, my brain is ultra-fuzzy these days, so please excuse any nonsense in this update!)

As we are moving through each day and all the details and exhaustion that come with each day, it is super hard for me to be able to stop and remember this sacred thing we are celebrating this week.  Please remember with me, that Jesus came as one of us, suffered all that we could ever suffer, died so that we can be with Him forever, and rose from the dead.  He is risen!!  We love because He first loved us...with the truest love...Jesus gave His life so that we may live.  May this truth imbed itself on our hearts today and everyday.  May we, in turn, love and serve each other today and everyday.

Much love to you!

Dana

WE ARE HOME!!!

After waiting allll day, we finally got home today around 4:00.  Then we had to go through an hour of the re-admission process for home nursing (for the night nurses), Ann Carlyle got home from school, dinner, unpacking all the things, trying to get back in the swing of things like pulling meds, making tomorrow's lunch, etc. and Frazer had to leave to drive to Nashville tonight for work.

Elle was super happy to leave the hospital, of course, and the whole way home she was looking out of the window like she had never seen trees before.  :) We did manage to squeeze in a little time in the tree swing after dinner (and Frazer and Ann Carlyle had a good father-daughter jump on the new trampoline).  The sun was shining, the breeze was perfect...so very thankful to be home and able to get outside for a few minutes.

Elle probably would've stayed there all night but she was starting to cough up more junk, so we had to go in to put on pjs and wind down for bed.  But her lungs have handled all the day's activities very well!  I spot-checked her sat (oxygen saturation) a couple of times after we got home and when I felt she was out of breath from exertion, and it was always 97 or better.  A++.  AND she didn't even need oxygen last night!

We will have her our home monitor for the next few nights since last night was the first in almost 2 weeks that she hasn't needed oxygen.  I've got everything ready just in case, but hopefully all that equipment will sit in the hallway unused.  So far, so good!  Her sat has stayed in the low, but acceptable/no-oxygen-needed range.  

Our night nurse coming at 10 to watch Elle until the morning so I won't be alone in caring for Elle.  So thankful for that help.

Well, I'm too tired to think of anything else to fill you in on!  :)

Good night to you all - thank you for continuing to pray for us.  Let the next chapter begin!

Dana

Happy because we are GOING HOME!

Tree swing happiness

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

Elle Update: 4/8 Day 9

(I just had to double check the days again because my brain can't compute...yep, 9 days in.)

Another good day!  Elle did great keeping her sats mostly above 92 today.  She did have to go on oxygen for about 5 hours last night (a super low amount though)...and she has to go at least 24hrs being on room air before she can go home...so the clock reset this morning at about 4am.

She hasn't wanted to eat much today, but what she did eat, she ate well.  She fatigues quickly and was coughing up more junk from her lungs (that's a good thing - we want it outta there) but she's getting stronger each day and that's what we want!

She's still dealing with diarrhea multiple times a day due to her antibiotic.  Right now, it is what it is and she has to have this antibiotic.  We are upping her probiotics though and giving her zofran for nausea when she needs it.  She was pretty nauseous and miserable last night after her dose of antibiotic...she wanted so badly to sleep but just couldn't because of her tummy for almost 30 minutes poor thing.

But again, all in all, she is looking great.  The doctors are encouraged at her progress.  Her temperature stayed stable all day too.  There is some talk of going home tomorrow perhaps, but we might have to stay until Wednesday.  We had a pulmonology consult today to make sure we have a good home plan.  She will have some blood drawn in the morning that will help the doctors decide on a discharge plan.

Elle is getting more and more energy back and with that comes a good bit of antsy-ness.  So please pray that she miraculously stays content to sit in a bed in a hospital that she has been in for 9 days.  Please pray for her tummy and for her lungs to continue to heal.  Please pray for her coughing muscles to be strong and do the job they need to do.  Please pray for the rest of us as we are so weary.  We are tired of being apart and being on this specific roller coaster...although truly thankful for the amazing recovery Elle has made.  The pulmonologist was telling us today, from her point of view, how dire the situation was that night Elle came in.  That her organs could not have worked for much longer under those conditions.  Thank God for LeBonheur and the wonderful, wonderful medical team that has been caring for Elle...it's a big, big team.

And thank God for our big, big team of you all.  We surely could not carry on without you.  Much love!

Dana

(Don't you love these short, positive updates?!)

Oh and PS - I meant to include this yesterday, but I forgot because again, my brain.

When I was driving with Ann Carlyle to the hospital yesterday, we were listening to Ellie Holcomb's newest CD 'Sing: Creation Songs'.  My absolute favorite song on there from the first time I heard it is the last one...'He Loves Us'.  It's a short, sweet lullaby taken from Isaiah 25:8 and Psalm 42:8 about Jesus and His love for us. 

Here are the lyrics:

(The tune is also precious and beautiful...you've got to listen to it. Ann Carlyle and I listened to it 3 times in a row yesterday in the car.  It is often times on repeat. It speaks straight into our souls.)

When we're lost, God is light
He'll be with us through the night
Cause He loves us

When we're sad, and need to cry
He will sing a lullaby
Cause He loves us

From the rising of the sun
After every day is done
Even through the dark of night
God is with us all the time

When we fall and make mistakes
God will cover us with grace
Cause He loves us

Even if we run away
He'll come find us just to say
How He loves us

From the rising of the sun
After every day is done
Even through our darkest night
God is with us all the time

Everything that's on the earth
Land and sky, and flowers, & birds
They're all singing God's love song
And we can sing along

Every moment, Every day
Everywhere in every way
God loves us

(Thank you, Ellie, for this song!)