Monday, April 15, 2019

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 effecting 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

Wednesday, April 10, 2019

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

Tuesday, April 9, 2019

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


Monday, April 8, 2019

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!) ❤

Sunday, April 7, 2019

Elle Update: 4/7 Day 8

Great day today!

Elle has made great strides in eating solid food and SHE IS OFF ALL OXYGEN!!  She came off of it about 5 hours ago, has eaten and has still done great!  Everyone feels really positive and encouraged at her progress today.  We will be here another night for sure and then it will just be day to day...but I see light at the end of the tunnel.

Her white blood cell count was up a bit this morning but everything else looks just fine and she looks just fine, so they aren't too concerned about it.

Ann Carlyle's birthday party was a big success!  Thank you to all the adults at the party that helped keep an eye on kiddos and helped corral them and helped keep my sanity.  :)  Ann Carlyle had a blast and it was the perfect end to her birthday weekend.  (And I for one, am glad all the activities and events of this weekend are over!  Whew!)

Thank you for praying for my sleep last night!  I slept great.  I wish I could've had another 5 days to sleep but I'll take the 8.5 hours I got.  :)

So pretty much all good things here.  Howbout that for an update!  (And look how short it is! Yay!)

Please pray for an inordinate amount of good sleep here at the hospital for me and Elle and a good sleep for Frazer and Ann Carlyle at home.  Ann Carlyle has been going nonstop with little sleep for a week now, so she needs a lot of rest tonight.

Much love from the Gieselmann's!
Dana

Saturday, April 6, 2019

Elle Update: 4/6 Day 7

I just looked back at my emails to make sure 'Day 7' was right.  It was 1 week ago (almost exactly) in the 9:00 hour that we realized we needed to head into LeBonheur with Elle.  Can't believe that.

And on a much happier note, it was 10 years ago exactly in the 9:00 hour that Ann Carlyle made her debut after trying to stay in me forever and ever amen.  We like to joke with each other that she was just too comfy-cozy and decided she wasn't going to come out.  We are so thankful for her life and for her heart and for the incredible little lady she is becoming.  Her heart has grown exponentially with each year - we pray God continues to grow her heart and use her in all kinds of ways.

I got to see her in her school musical today - and she was awesome.  She was 'just' a servant and townsperson but I told her that I thought it took more acting chops to make those roles interesting and fun than if she had actual lines.  :) I don't know if that's true or not but she was animated and all-in and had a blast doing it.  

She woke up to a million balloons and signs and streamers in the house (shout out to Janet and Callie!) and pinwheels and a huge sign in the yard - well, 4 signs actually - a cupcake, the numbers 1 and 0 and a doughnut.  So fun.  After a big pancake breakfast with all 4 grandparents, she went to her marathon performance day from 9-4ish.  There was a cast party and then I brought her home to surprise her with a trampoline in the backyard (which she has wanted for years!) and then we drove to the hospital to see Elle and Frazer and celebrate there.  She started the day out with Frazer and is ending it with me.  I hate that we are all split up on her birthday, but we tried to make the best of it and I think she's had a super fun day.  She's exhausted, so that's a good sign right?!  AND she gets to have a fun party tomorrow afternoon with a slew of friends!

Y'all, she has received over 100(!!) cards and will be opening them for days to come.  Y'all.are.the.best.  It's put a smile on all of our faces...so, so fun!!!  Thank you to everyone for helping us pull off this day and for helping us celebrate our girl.  We couldn't do it without you!

So - Elle update - she did not sleep for 22.5 hours straight.  Literally.  Naturally, neither did I.  I was already utterly exhausted - I'm not sure there is a word for my level of exhaustion at this point.  But I am at home tonight with Ann Carlyle so hopefully I'll get some good sleep.  Please pray that Elle sleeps as well.  She has had a really hard time with sleep since being extubated, which I'm assuming is at least partly due to the steroids she got yesterday and this morning.

Elle was moved out of the PICU this evening and onto the neuro floor!  This is stepping down from intensive care, so it is cause for celebration!  They felt she did really well the last 24 hours and has tolerated having oxygen weaned from high-flow binasal cannula to regular binasal cannula, which basically means she doesn't need as much support breathing.  Very good progress!  AND she actually ate 5 goldfish crackers today!!  It will probably take her a couple more days to get her appetite back but that's completely normal, so we just have to wait and see.

Shortly after we arrived in our new room, Elle's temperature went up a little again and she started looking anxious and like she was struggling a little more to move air in and out.  They did a chest X-ray which looked great thankfully.  But she continued to be labored (in her breathing) and anxious.  I had to leave to take Ann Carlyle home, but Frazer said as of right now, she is breathing better after a breathing treatment.  Her temp is still a little high even after ibuprofen - no one really knows why her temp is increasing each day in varying degrees.  

So we made some really great progress today and Elle is doing really well but we aren't completely out of the woods yet.  Please continue to pray for her lungs to heal and for her appetite and ability to eat to return.  These are our biggest and most immediate prayers.

Also, please pray that we can make it through tomorrow and Ann Carlyle's party all while having Elle in the hospital.  We have lots of hands on deck (we couldn't be more thankful) and without those hands, we literally would not be able to make it happen.  Please pray that Frazer and I will both be able to be at the party and that Elle does okay without us for a couple of hours.  

If you have seen me lately or if you see me soon, you will most likely see me dazed and confused because I am.  I apologize if I couldn't complete a sentence or even a thought.  :) 

Much love and gratefulness - 
Dana

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