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  

Mid-day Update 4/3 Day 4

Hey guys - real quick update since last night's news.

Elle is still doing ok but we are definitely not out of the woods.  As often happens in ICU situations, especially combined with problematic neurological issues, things can change very quickly.  And most of the time, you take a couple steps forward and one back.

It seems Elle had a bit of a step back overnight.  Her chest X-ray showed a bit of fluid on her OTHER lung (the left one that had been healthy).  So they did a chest ultrasound this morning and thankfully, it was okay.  They were making sure that there wasn't a lot of fluid that would warrant a chest tube on that side.  And just to have a look around.  But again, it was okay.

They tried to turn down the vent settings a bit but then had to go back up (more machine breathing, less Elle) but we are trying again this afternoon.

Also, she just doesn't seem as active and strong as she was yesterday.  She is sleeping much of the time (although, this is not a change since we have been here).  She also seems to have a bit more junk she is trying to cough up from her lungs.  And we have seen a big increase in seizure activity today.

They are running a viral panel (bloodwork) on her to see if there is any virus going on.  We should see these results by the end of the day.  Until then, all the medical people have to put on gowns and masks to come in the room to prevent possible cross-contamination between patients.  Fortunately, we don't have to gown and mask and if the viral panel comes back clear, then they will take the precautions away (no more gown and mask for them).

They also did a spinal tap this afternoon to test for any infection/inflammation in her cerebral spinal fluid.

We are still trying to figure out when we should do the infusion vs the timing of removing her breathing tube (infusion before removing it or after) and trying to figure out if there is another underlying infection.

There are so many things to consider and to weigh out when trying to find the best way to treat her.  I remember in nursing school, much of the testing revolved not around a right or wrong answer, but around what is the best thing to do 1st, then the 2nd, then the 3rd, etc.  Which of course muddles the water.  Medicine is often not a hard science, but there is art to it too.  As much as we wish it could be black and white and completely objective, it can be so many subjective shades of gray.

Ok I think that is everything for now.  I'm sure I forgot something.  But anyway...

Feeling a bit more emotional today and just straight up sad for my baby. Please pray that we can grieve as we need to but also have clear minds and hearts as we work with her medical team to give her the best care we can give her.  We've had some good snuggles with Elle and are enjoying the bright sunshine coming through the window today.  Spiritually, I do feel grounded but the decision-making and the unknown and the fear makes my flesh feel utterly undone.  It's all just hard and broken.

Thank you always always always for praying for us.  Having an army of love standing with us is truly life-giving.

Much love!

Dana

(PS if we find out anything definitively, I'll try to update again tonight, but it might not be until tomorrow.)

Elle Update: 4/2 Day 3

Chest tube is out!!!  (This is the tube that was inserted between a couple of her ribs on her right side to drain the fluid out from around that lung.) The removal was quick and not too painful for her.

We are officially on 'weaning protocol' for the vent.  This means they will lower her ventilator settings little by little (but probably more frequently and regularly) as long as she tolerates it.  It may take until Friday, but that's when we hope to have the ET tube out.  (This is the breathing 'endotracheal'/ET tube that goes in her mouth, down her throat and into her lungs. It is connected to the ventilator which helps her breathe.). While we want to make sure not to remove the ET tube too soon, we want to do it as soon as possible because we don't want her breathing muscles to weaken too much while relying on the vent to breathe.

(I hope all this make sense - I've had some questions about what is what and medical terminology, etc.)

So bottomline, chest tube is out and breathing tube is still in and she is still on the ventilator.

Elle was very active this morning and awake for much of it.  We had to give her some medicine today that helped calm her down a bit because we don't want her too active because she could easily pull her ET tube out.  That would not be good.  She also has an IV that she doesn't need to be tugging on either.  But yay for activity!

The tummy problems and diarrhea seemed to have slowed a bit, so we are thankful for that.

We are still waiting on some important lab results - please pray we can get those tomorrow!

We are waiting to do her infusion for now.  There are a few reasons why, but after some discussion, we all decided it would be best to wait at least a couple of days.

I got to get into bed with Elle today and snuggle in with her.  Didn't really get to hold her, but I'll take it.  My arms miss holding that girl.

She is very stable and moving in the direction we want her to go. All in all, we feel that she had a pretty good day.  We are seeing more and more our Elle-belle doing things that she usually does and that does our hearts so much good. AND we got more smiles today!

Thank you again to all who have prayed, written, called, visited, encouraged, lifted us up in love in all kinds of ways.  We are so blessed - and I mean that truly from the bottom of my heart.  

We thank God for sustaining us and feeding our souls and for giving our hearts such joy and peace despite extremely difficult circumstances.  We do not feel like we are flailing out of control with no one to hold us.  God is near.  God is here.  He loves us so much. We have many fears and worries and concerns and this is all just really, really hard down to every cell in our bodies, but our feet are set firmly on Jesus, our Rock.  Our Joy and our Peace.

Much love to you!  Thank you for reading this and caring for us!

Dana

Sweet baby with Daddy

One of my favorite pictures ever...her first hug for me since we have been here...

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

Please pray for Elle

Hey guys - quick update to let y'all know what's going on and to ask you to please pray for Elle-belle.  

She had seemed to have a bit of a cold starting Wednesday afternoon but by Saturday, we had her on oxygen and we were monitoring her closely.  We tried to manage her symptoms at home but by Saturday night, we had to take her to the emergency room for respiratory distress.  

They intubated her, put her on a ventilator and gave her a chest tube because there was a ton of fluid in and around her lungs. They started her on IV antibiotics although there may not be an infection - but just to make sure everything is covered while we wait for lab results.  She is sedated and on some IV pain medicine.

We are taking this one step at a time.  We are hoping to wean her off the ventilator tomorrow or Tuesday but you know, it just depends on so many different things.  I will say that we are greatly encouraged by how well her lungs have improved in just the last 24 hours.

We will be at LeBonheur for at least a few more days...but again, so many variables.  (Right now we are in the PICU because she is sedated and intubated.)

Please pray for Ann Carlyle as she is turning 10 in just a few days (!!), is performing in her first school play this week and is trying to process a lot of scary stuff she doesn't understand.

Please pray for me and Frazer as we are worried, sleep-deprived, trying to make wise medical choices for Elle, all the while trying to care for and be present for Ann Carlyle...especially this week!  Please pray for sustenance and for us to not be driven by a spirit of fear.

Pease pray for Elle's whole medical team - that they would make wise, caring decisions on her behalf.

Please pray for Elle to continue to be stable and improve and get home as soon as possible!  And please pray that we figure out what has caused all this mess.  

Also, please pray for Frazer's dad as he has been dealing with some pretty severe pain that we don't yet know the source of.

Thank y'all for gathering around us and lifting us up.  We are so thankful for you.

Dana

March!

Can y'all believe this? It's only been 2.5 weeks since my last update! It's a March miracle.

Elle started school this past week!  She was worn out but a good worn out.  Her first day, she had a field trip to the Art Project - an art workshop in midtown.  She came home with paint everywhere so I know she had a blast.  Wednesday, they had a wheelchair basketball game and pep rally that all the kids attended.  When I picked her up at 12:30, it sounded like a massive dance party was going on in the gym.  Thursday, they studied Italy.  Friday, they had a Dr. Suess parade.  That's a strong first week of school right there!

We are so thankful for Shrine School!  Everyone there is so kind and truly want the best for these kiddos.  Lots of smiles.  Lots of gratefulness.

It seems that Elle is losing/has lost a good bit of eyesight the past month.  She is doing ok with it - she doesn't seem too frustrated with things specific to vision - but it's a new stage we are entering into and there are challenges and there is a grief that comes with each bit of progression from Batten.

We also are seeing some different signs of dementia - some of these things cause her distress and some of these things don't.  My prayers have always been that Milla and Elle would never not know who we are...that they would know our sound and scent and touch and that that would bring them comfort even when they can't see us and can't understand everything going on around them.  And that the dementia would be a strange kind of blessing - that the clouds of confusion would wrap them in joy and the presence of Jesus and the knowledge of His deep, deep love for them.  Praise God we saw this happen with Milla...and now we continue those prayers for Elle.

It's a weird thing.  People ask me how Elle is doing and truly, I've been at such a loss of what to say these days.  She is not sick with an infection, her seizures aren't totally out of control relatively speaking and she's a pretty content kid most of the time.  All these things we are so, so grateful for!  But we also see disease progression every single day...some of which are such small progressions but we recognize so much from Milla's journey. 

I've spoken of this before (not sure if I've written about it) but seeing these things is complex.  It's scary and heart-breaking to see these same things happen to Elle and we know much of what is to come because we have lived through it already.  And sometimes my courage and fortitude wavers as I have to walk this road all over again and too, while I am still very much grieving Milla.  It is crazy how much Elle can look like Milla.  I mean, I have to remind myself that I'm not holding Milla.  And there's a part of my heart that loves seeing an actual physical body that is such a copy of her.  My heart swells for just a moment as I see Milla...just for a moment...because I miss her face and her body and her hands and everything about her.  But then the depths of grief crash into me and my body feels actual pain from the loss of her.

We are still without a night nurse for Thursday, Friday and Saturday nights but we've had substitute help most of those days the past couple of weeks. Please keep on keepin' on with praying for us.  Thursday night, Frazer was out of town and I was up all night with Elle and I'm STILL feeling it.  You'd think I'd have some kind of tolerance built up by now, but instead I think it just chips away at me.

When you think to pray for us, please keep a dear family from Memphis in your heart - the Masons.  Their little girl, who had Batten Disease, died a week ago.  Our hearts just break with them.  We also know that while nothing can remove their pain and fix their utterly broken hearts, there is a supernatural balm that covers us from our God through the prayers of others.

Spring break is next week - can't believe it!  We, as a family, are not going anywhere but Ann Carlyle and I are doing to road trip to Birmingham to see my family for a couple of days.  We are both excited but Ann Carlyle is super-duper excited.  :) Please pray that everyone stays healthy and that we can go and have a good time there.

I am thankful to be able to take Ann Carlyle away even just for a couple of days.  She also sees the way Elle mirrors Milla and she feels the loss (and anticipated loss) of her sisters so much...it seems she feels that loss even more-so the older she gets.  Please pray for her little heart.  She has sacrificed and continues to sacrifice so much.

I'll wrap up with a verse that I read this morning at church...

"And after you have suffered a little while, the God of all grace, Who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and settle you. To Him be the glory and the dominion forever and ever. Amen."  (1 Peter 5:10-11) We live not for ourselves and for this world, but for Him and for the world to come.  I was reminded this morning yet again that our suffering is not wasted.  It matters.  Praise be to God!

May God bring you comfort today, wherever you are, whatever you are going through.  May you feel the deep, deep love of God.  May He wrap you in His light and warmth on this cold and dreary day.  Much love from the Gieselmanns!

Dana