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

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

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