New life has bloomed here…

For anyone who grew up in a church where this song follows the benediction, you just broke into song.  Haha!  While we’ll look into that later, this post is about new life, new beginnings, and… wait for it… normalcy.  Yahoo!

I know I haven’t posted in several months.  Part of me has just been busy… the other part of me wrestled with the progression of this blog.  We had a wonderful holiday season AT HOME and have had just minor bumps in the road this winter.  Ellie’s pretty much been a hermit most days.  We have taken her to church maybe twice in the past three months… she goes on grocery shopping trips when we don’t have a nurse at home… she went to a Valentine’s event for our local Down Syndrome Association… she even went to the zoo with us once.  But she’s really not been out much this season because there are just too many sick people out and about for me to risk it with her. 

Since many of you haven't seen her in person in a while... she is getting bigger 

and rocks some pretty cute curly pigtails sometimes.

While we always have plenty of updates for Ellie, we’re also at a point in our lives where we just have a lot going on with all of the kiddos and I struggle to focus on just her with this blog.  I also have so much of my heart that’s in a happy place with her and wanting to share that sunshine with other families.  I’m not exactly sure what that direction looks like yet or how to keep this blog focusing on Ellie when there’s so much else happening in our household.  This is why I’ve struggled lately with posting… it’s ridiculous, really… but something that my brain has been keeping me from doing for a while.  I guess I’ll just go with the flow and see where that takes me.  On to general updates:

Lance just turned six and is one smart little dude.  He’s reading well and is obsessed with science and nature.  He’s likely the child that we have the most focus on right now, though.  As a family, we’re working through his ADHD diagnosis and trying find the best course of action to help him thrive.  When I used to joke that I “was too ADD” for certain activities… I had no idea how real and difficult ADD or ADHD were.  It’s crazy, y’all.  Of course, it’s nothing life threatening, just something we have to help him navigate.  The part of me that hurts the most is my own frustration levels with it.  There are things he does that make my blood boil.  Sometimes it’s totally his fault, other times I wonder how much control he has.  So my job (our job) is to do everything in our power to help him feel a sense of control over his actions.  We can see his outbursts manifesting in his relationships with others, too.  When he’s the aggressive kid (even if he’s tiny), it impacts his ability to make friends and interact well in a social setting.  That part hurts me, too.  Academically, he’s a rockstar (in my humble opinion, of course).  He’s doing well there and usually makes easy work of his homework.  Half the time, I don’t even have to read the directions to him because he is reading them to himself.  I don’t remember being able to read that well in kindergarten.  He turns everything into a math or science problem… and then tells me how things work (like gravity, or what stars are made of).  I’m amazed.  Now if that would just carry over to the social aspect of his life, we’d be golden!

Blowing out candles on his birthday cake.

Kaleb… he’s a sweetheart, but a soft heart.  He’s obsessed with taking care of his babies (stuffed animals) and being a superhero.  When he’s in a crowd, he’s often a dinosaur that roars at others… weird, I know.  He’s only four and I think he’s solid with his schoolwork, but there is a huge difference in the rate of absorption between our two boys.  Lance would count and write and identify all of his letters.  Kaleb doesn’t seem to be as interested with school.  He gives me daily updates on who he played with and what his snack was.  I think that’s fair for four, right?  He is upstairs right now wearing a hard hat and having a sword fight with a race track.  He’s pretending the lengths of track are snakes that are trying to eat his stuffed animals and he’s the zookeeper defending them.  That’s Kaleb.  His imagination is wicked vivid.

Peeking out from the top of his fort in the livingroom this week.

As many of you saw on FB, our little Bug took her first steps on January 16^th.  What a celebration this was!  We’re just pushing her more each day to get her form correct and get her to walk further and such.  We’re still battling storming episodes, but only when she’s sick.  They’ve always been idiopathic, so we’re not 100% sure what’s causing them, but we’re pretty certain it’s a combination of congestion, physical stress, and sleep apnea. 

On Thursday, I was working later and Brandon was catching up on school work.  All of the kiddos were in the family room watching a movie.  I went over to check on them and then into our room to see if Ellie was maybe sleeping by Brandon while he worked.  Brandon thought Ellie was with me.  I asked the boys where she was.  Lance shrugged without looking away from the screen and Kaleb said, “She went upstairs”.  What?  Brandon and I raced up the steps to see if she had, indeed, climbed the wooden steps by herself with no supervision… she had.  She went into her bedroom, closed the door, and started emptying her medical supplies all over the floor.  What a turkey.  She was rather proud of herself.  I think we won some kind of parenting award for that one, right?

In other family news, we bought some chickens.  I know… this isn’t news… but hear me out.  We have had chickens every year for quite some time.  The boys loved them and I loved to have them for two reasons: they lay eggs (and we eat at least 3 dozen of those a week), and chickens have always been calming to me.  If you’ve never sat and watched chickens for a while, try it sometime.  It’s really quite serene.  Now, when Ellie was little and hospitalized so much, we had no way of caring for our girls and had to give them up.  For the next two years, we went without chickens because we never knew what one week would bring from the next.  We were too preoccupied with what was going on with Bug to chance starting our little barnyard again - until now.  We finally feel like we’re in a solid place to start expanding our little family (in the form of animals… no more small humans).  So chickens are it right now.  Hoping to also add bees soon… who knows from there.  I feel like if we live in a farmhouse, we ought to have at least a few farm animals, right?  Chickens are a good start… a small celebration of stability.

We ordered our chicks online and picked them up at the post office.  Kaleb wanted them to ride next to him the whole way home.  We so missed the sound of chirping that filled the van.

Day 1:  we have 16 of them... and they're much bigger now.

That also brings me to a little, insignificant phone call I got about two weeks ago that really caught me off guard.  It was from Dayton Children’s and the woman on the phone was asking if she could pre-register us for Ellie’s ENT appointment on 3/1.  Of course, she could… but I was really confused.  I said, “Have you changed your policy on this or something?  We’ve never gotten a call like this before… we always just go up to the counter when we arrive and let them know that none of her coverage has changed.”  The lady said that if we hadn’t been seen in over 30 days, then it’s their policy to give a courtesy call like this.  HOLD THE DOOR – we haven’t been seen in 30 days?  That’s amazing!  That’s not happened to us before… thirty days without stepping foot into a hospital – yahoo!  I’m sure it was nothing to her, but to me… that seemed like a huge accomplishment.  Not only has Ellie not had to be admitted due to illness, she is now more stable and doesn’t need to be seen by her specialists as often.  Cue the happy dance!

And as for that appointment with ENT… well, we were finally given some sort of timeline for decannulation… and it’s very exciting.  Early in April we will go in and Ellie will get another sedated airway evaluation in the OR.  That night, we’ll be admitted and she’ll undergo a capping trial at night (we do this on the regular at home, so it’s not something new).  She doesn’t like it, though.  The next day, her surgeon will remove her trach.  If all goes well that day, she’s scheduled to undergo a sleep study that night sans trach.  This is a big deal, y’all!!  Again, if all goes well, and she’s able to get through her sleep study without her trach… she will likely be going home without it.  We’ve spent the past 2.5 years living the trach life… so I’m not even sure I’ll know what to do with myself… but we’ll be celebrating, for sure!  We’ll have to think of some way for y’all to join us in this celebration.  

We’re hopeful that the timing laid out works as planned.  If it doesn’t, well… waiting is nothing new for us.  There are a lot of “if all goes well” in this plan.  But it’s the first time we’ve had a tangible plan with dates and scheduled appointments to move in that direction.  If y’all can lift some prayers that we can do this #decan business, we’d be ever so grateful.

So as my daffodils start to emerge along the sidewalks, we celebrate new life, we celebrate unexpected little mercies, we celebrate normalcy (or our own version of it), we celebrate having a plan (even though we know it’s all God’s timing, really).  Celebrate with us, will ya?  And for any of you wondering about the title of this post and the song that goes along with it, here are the lyrics.  Pretty fitting for the road we’re currently on in this crazy life:

New life has bloomed here

God’s love has warmed us

Now the world calls us

To spread that love

God’s peace go with you

May it sustain you

And bring us together

To praise God again.

More on the “Now the world calls us…” part in another post… coming soon ;)  Until next time, friends, here are some pictures of some of our shenanigans over the past several months.

 This is exactly how all of our pictures with Santa look this year.  Awesome, right?

Christmas morning at our house

 

This is seriously how he ate his ice cream cone... and yes, 

he bit a giant hole in the cone 1st... it did not end well.

 The addition to Amos Memorial Public Library in Sidney is AWESOME!!  The kids love it.

Just before Inspired By closed their doors last month, we took the kids there to paint pottery.  Kaleb did an amazing job of spilling his glaze all over himself.  It washed out just fine.

Lance picked out a tinsy tiny reindeer to paint.  It's about the size of an eraser... but it's cute!

And if you happened to miss my post on FB about this, Ellie was featured on 22 different rotating billboards in the Cincinnati area in early February.  Doing our part to raise awareness for CHDs!

Go away, thunder, we’re not friends.

As I’ve said a thousand times, when you don’t see me post for a while, it’s because things are going great with Bug and we’re busy spending our days being “normalish” and enjoying every morsel of it.  And boy, have we been doing that.  We’ve been living it up as we’ve been able to do so many things out and about as a family… knowing that cold and flu season was looming ahead… knowing that it brought with it the need to hunker down with the littlest one.  Dang it.  We’d really hoped that by now, she would be free of her trach, but we’re not there yet.  Last Monday she had surgery #12.  This is the first time that she didn’t actually have any cutting or dilating happen while in the OR, so I don’t think this actually counts as a surgery.  It does mean that her new airway has stabilized quite a bit (big success), although there is some concern that the front of her trachea is collapsing a bit right above her trach stoma. 

That night, we tried a capping procedure at night in the hospital.  Epic fail, I thought.  She was able to oxygenate well… which was the goal, but Ellie was miserable.  She cried and screamed (remember that we’re not used to hearing this, so it was really heartbreaking) and fought sleep the entire night.  I held her in the tiny recliner I was supposed to sleep in and tried to get her comfortable.  I would try desperately to get her to sleep for 45 minutes to an hour – finally getting her to drift off – and the IV pump would alarm, or the feed pump, or it was time to take her blood pressure.  At 2am, I finally broke and snapped, “We’ve got to leave her alone” at the nurse.  It wasn’t my finest moment.  I was crying… I was frustrated… I felt like this glorious dream of having Ellie decannulated was crumbling in front of me.  The nurse reassured me that Ellie was doing well and surprisingly, went on with all that she had to do through the rest of the night like a ninja in Ellie’s room.  I thanked her in the morning and apologized for being grumpy at 2am.  I took my very exhausted baby home with orders to cap no more than an hour at a time during sleep for the next four weeks.  We’ll see where that puts us.  The 1-hour trials are still hard to do here… but nothing like the ten hour torture of that first night.

A very tired Mommy & Buggy after her 1st night time capping trial

Sometimes, Ellie falls asleep capped and does great through her 1-hour trial, but more often than not, she fights it.  She has sleep apnea and needs oxygen while she sleeps.  This means that we have to put a nasal cannula on her before bed.  Ellie hates this.  Thanks to the G tube and trach, Ellie hasn’t had to have things taped to her face since she was two month old.  She is not about to let us start doing this again.  So I think part of her frustration is having tubes shoved up her nose and taped to her face when she’s supposed to be relaxed.  The other stressor:  breathing itself.  For so long, breathing has been effortless for Ellie.  Either her ventilator was doing it for her, or she was breathing through the trach with absolutely no resistance.  Now, she has to figure out how to breathe through her nose when she sleeps and that’s a whole new thing to learn.  Something so simple and something we all take for granted… she has to learn.  And it’s hard work.  So that’s part of her frustration, too.  This road to decannulation is harder than I imagined – here’s hoping that it starts to get smoother. 

She’s still so full of joy.  She’s a smart little cookie and has personality to spare.  She wants to be involved in everything that goes on every single day… and we couldn’t be more excited about all of this.  She is making incredible progress in therapy and has even started saying mama, dada and bub,bub (for the boys).  She’s learning how to climb our steps (and sometimes how to fall back down a few) and is standing all the time now.  She’s amazing.

She's working hard on self-feeding.  

And we were keeping the cannula on her all day to see if it helped with her comfort level

One trick that she’s picked back up that we’re not so impressed with, though: storming.  Ugh.  I can’t even begin to tell you how this makes me feel.  The first episode occurred on Monday, October 10^th, the day of my grandma’s funeral.  We’d spent the day with our family celebrating the life of my grandma and enjoying the company of family from all over.  But you know how those kinds of days can be physically and emotionally exhausting, right?  This was absolutely no exception.  By the end of the day, Brandon had headed to work and I snuggled in with all of the kiddos in my room.  We did not have a nurse that night.  Ellie seemed restless and Lance offered to snuggle with her.  When her pulse ox alarm started to go off, I thought her probe was bad and silenced it for a bit, while I climbed out of bed to cuddle her.  She nuzzled into me, but couldn’t stop moving.  Her pulse ox machine never reads well when she moves around so much, so I waited a bit to turn it back on.  After some more cuddles, she started to sweat and I decided to bring her upstairs to her room, place her in the crib and see how she’d do there.  When I kicked the oximeter on this time, her heart rate was over 170, her oxygen levels were fighting to stay above 90 and when I took her temp, she had skyrocketed from “feeling warm” an hour before to a temp of 104.  I called Brandon at work and gave her Tylenol for the fever.  He headed home quick during his lunch break and took her vitals again.  Her fever was starting to come down… slowly.  By this time, the Tylenol was able to calm her enough to let her sleep.  Her respiratory rate was still high, but starting to decline… HR and temp followed suit.  Her oxygen level raised to a normal level as well.  Storming.  Only this time, Tylenol seemed to make a difference for her.

We weren’t 100% sure this was what was happening because she hadn’t stormed for about a year and that was under extreme stress in the hospital.  We had a great (read: normal) day with no issues.  She wasn’t sick, she wasn’t in pain.  There wasn’t an explanation. 

Earlier this week, she showed some of the same behaviors for our night nurse.  Ick.  Last Friday, we’d had another fun family night at the barn enjoying a fish fry and lots of activity.  All three kiddos fell asleep on the way home (Ellie fell asleep in the driveway with her cap on her trach).  Our night nurse, Danelle, came on shift 15 minutes later and took the peacefully sleeping Bug out of my arms and let her finish her 1-hour capping trial without issue.  I went to bed, looking forward to enjoying a night of sleep having my big bed all to myself. 

At about 12:20am, Danelle knocked on my door.  She said, “Jackie, I need you up here”.  I thought it was already morning, and stumbled out of bed to go upstairs.  Once upstairs, I could see that things weren’t right at all.  Ellie’s color was awful… pale, almost yellow.  Danelle started firing things at me that my sleepy brain wasn’t ready for.  I watched as Ellie drew her knees and elbows up and shook (seizures?), I saw that her heart rate was peeking around 160 and her oxygen was struggling to stay in the high 80s.  She was on 3L of oxygen at the time.  Yikes!  Her capillary refill was awful.  When we pressed on her fingers and toes, they’d stay white for a very long time.  Her respiratory rate was increasing.  If this was storming… it was coming on fast and furious and it was looking scarier than what we’d seen when she was little.  I was scared.  For the first time in a while… this little girl really had me scared.  I called Brandon.  Then I called mom and she said she’d be right over to stay with the boys.  We took a core temp on Ellie (98.4) and packed up the van to head to Dayton.  We called ahead to the ER to let them know the situation and when we arrived, were taken into the Special Care room.  Now, we’ve had our share of ER trips with Ellie and the boys.  We’ve been taken back to regular rooms and we’d sit there and wait for registration… then for another person… then for someone else… the ER was a long waiting game.  Not this time.

This time, they walked us back to a room behind the charge nurse desk, through a set of double doors, and into this one room… separated from all other rooms… it had an elevator right outside of it and big double doors into it.  It was set up like a trauma room and I’ve never been in a trauma room.  I walked in and my heart dropped.  I set Ellie down on that big bed and took a step back.  I looked behind me as ten (seriously – TEN) people flooded that room and surrounded my little girl.  Thank goodness Danelle was there because I couldn’t speak much at all.  I was able to answer a few questions, but she was there with her chart and was able to answer specific questions about medications and doses and such.  I was overwhelmed.  They took a core temp again – 104.7!  Her temperature had risen from 98.4 to 104.7 in less than an hour and half.  This storm was severe.  After an hour and a half or so, Ellie calmed down.  They’d given her a Tylenol suppository and that had settled her down some.  We’d wait in the special care room until daybreak when a room was available upstairs for her.  She had awful trach secretions and they wanted to monitor her for those, so they took us up to PICU for observation.  The rest of our admission was based on those secretions.  Nothing more was said about storming from the medical team – even though I’d pushed with my questions.  I’m not sure they believed me at all… even when I explained her history and how quickly things changed that night.  This isn’t new territory for us… this is a child who storms who shouldn’t storm and that makes me sound like a crazy person, I guess. 

Getting and EKG in the ER after she'd settled down

The next day - back to her silly self

So now onto the next step… the part that makes my insides turn and twist… the part that makes me want to throw a fit like a petulant child:  we need to know why.  We need to find what we cannot see, essentially.  We need to figure out what has changed recently to make these storms reemerge in our “healthy-ish” girl.  In the past, these were primarily cardiac related… we think.  To be honest, her storming has always been idiopathic (or there wasn’t really an explanation).  But once her heart was repaired in Boston… they went away.  We’re researching diligently now… and making appointments with specialists to make sure we’re covering our bases.  Sooo… that’s where we’re at.  I feel like these stupid storms took the wind out of my sails, yes… but the silver lining here is that they’re only a small part of our life with Ellie.  She spends her days happy and full of life.  She signs songs to us and loves on us like you wouldn’t believe.  This is just another hurdle… but one we wanted to be done with long ago.  Damn you, thunder!  We are not friends... and you will not win this battle.

Home - but NPO

Okay, so I have been terrible at updating since last week... but it's been busy.  First, thank you all for all of your thoughts and prayers.  Ellie is healing well after her surgery last week... she's remarkable!

On Friday, the surgeon came in and removed her drains and dressings and I got my first look at her sutures.  On her neck, she has a long lateral incision that looks like a smile (how appropriate!).  On her chest, she has a small incision where they removed her rib.  The surgeon did a beautiful job with her sutures... I think her incisions will heal beautifully.  Friday was great!  Ellie was in a good mood, she was full of energy... and she was determined to climb out of the bed.  I didn't leave her bedside unless she was sleeping because I was sure she would launch herself over the rails.  Turkey.

Saturday morning, we were waiting on rounds and waiting on a time for discharge when I started feeding Ellie her breakfast.  She was eating well and drinking like a champ through her straw.  This is totally gross, but I leave her HME off of her sometimes to allow her to work on coughing up any secretions she has.  She'll need this strength when she doesn't have a trach... so this is good practice.  While we were having breakfast (yes, I was eating what she wouldn't touch on her plate), her secretions were heavier and more frequent than normal... and the color of her formula.  When I wiped them away with a paper towel, I inspected them (read: smelled them) to confirm that they were, indeed, formula.  I called in the nurse and continued to eat while I waited.  Yep... I'm that disgusting... I can wipe away sputum, smell it, and continue with my breakfast.  My grossness tolerance has increased significantly since having Ellie.  Ehh... what can I say?

Anyhow, when the nurse came in, I had him help with suction as I gave Ellie more formula to confirm what I'd already suspected.  Bottom line: she was swallowing some formula, but there was a good amount that was leaking down into her airway.  Fortunately, Ellie has the strength to cough that up instead of letting it settle into her lungs.  I was certain this would mean additional testing and such before we could go home, though.  I looked at her and said, "really, Gilligan??"  I assumed we'd have to have a chest x-ray to see if there was any fluid on her lungs and we'd have to have a swallow study done before we'd get to go home... and I thought maybe we'd have to wait until a weekday for that.  I was totally bummed as we waited for rounds.

The surgeon that assisted Dr. Elluru during surgery was in rounds to talk with us that morning and I sheepishly walked out, expecting bad news.  Dr. Patel had none of that for us.  He explained that the stent that they used covered the surgical site, and also covered her vocal cords (which we knew), but it came up high enough that it could cause the epiglottis to close onto the stent instead of onto the top of her natural airway.  Since the stent has a tiny hole through it, if it wasn't making a tight seal, some liquids could leak through.  This was to be expected.  What??  He said to stay away from liquids (or add thickener) and she'd be fine with baby foods, purees, and other soft foods.  We have to stay away from crispy foods anyhow, but he said we should be alright with soft things.  So we waited a few more hours and went home Saturday afternoon.  Awesome!  Our best guess is that the airway was sealing just fine the first few days post-op due to swelling in the tissue surrounding the epiglottis.  Once the swelling receded, the epiglottis started closing on the stent.  That's the only explanation we could come up with as to why we didn't see it earlier in the week.  [how many times can I put "epiglottis" in a paragraph, right?]

Saturday was busy... whenever we're discharged from the hospital we have to meet with our nursing companies to resume care before our nurses can start again... and we needed to pick up the things Ellie would need at home.  Saturday night, her baby food was leaking from her trach during dinner... dang it.  This is scary because the risk for things like pneumonia are awful when you have foreign things in your airway.  So we called the doc in the morning and she's been put on tube feeds (with a few solid foods... think sandwiches) just to give her mouth the practice of chewing and swallowing.  We only give her a tiny amount of food by mouth each day and the rest is given through her G Tube.  Thank God for tubies!!  (For those not familiar with medical jargon, "NPO" in the title of this blog entry stands for nil per os... Latin for "nothing thought the mouth"... since all medical jargon is in Latin and all.)

So Ellie is mad during mealtimes when she sits and signs "more" and "eat" at us when she can't really eat.  Poor kid.  We're keeping her belly full... but that's not the same as eating.  This girl loves her spicy food and peanut butter.  She's due back in the OR on 8/15 to have the stent removed.  We should just have a short stay for that surgery.  Let's pray that her epiglottis closes without issue once the stent is removed and this little beauty can go back to eating by mouth.  I know we'll see regressions in feeding therapy... steps she's worked so hard to achieve... but hopefully not too much regression.

In short - we are home.  We are working on packing and getting ready to move soon... so that keeps us busy while we're not at work.  Ellie is mad about this food situation, but we only have 13 more days like this until she's free of her stent.  Fingers crossed that all goes as planned!

This was Ellie on Saturday... waiting for discharge paperwork.

Post-op Day 2

Brandon worked last night and since Ellie is in a regular bed (not a crib), I thought I'd climb in and snuggle with her all night.  I assume that once she's really awake, we'll have to move her back to a crib because I'm certain she'll launch herself over the sides of a regular bed about fourteen times a day, otherwise.

So at about 11:30pm, after Ellie had been sleeping for several hours, I finally climbed into bed next to her and cuddled in.  She rolled into me and had the biggest smile on her face to see that I was there next to her.  I got the warm and fuzzies and drifted off to sleep.  That sleep was short lived.  Apparently, when you let your kid sleep for much of the day, then lay in next to her with her arms wrapped in immobilizers, she thinks they're weapons.  I'm not kidding... Ellie turned into a Chuck Norris gremlin last night and tried to kill me in my sleep for hours.  It wasn't cute... but I was too tired to get my butt up and move to the couch.  I assumed that she'd stop eventually.  She'd doze off, then awaken again and chop chop chop with her arms and legs again.  Seriously, I think she was trying to break me in half.  She's crazy!  At 4am, I gave up and went to the couch - knowing I needed to get up at 6am to start my day.  Maybe she just didn't want to share her bed because she slept beautifully once I was out of it.  Turd.

Needless to say, Ellie is feeling better today.  She's strong and moving around like her rotten little self.  She's sore, of course, but not as sore as I thought she'd be.  She has an unbelievably high tolerance for pain.  Yesterday, she was allowed to eat by mouth.  I thought this would be harder for her since the back side of her trachea was cut open and lays right against her esophagus.  But she had no trouble eating.  Tough cookie!  In the evening, Batman came to visit her - we had to send this picture to her brothers.

After this, we were able to finally give her a bath and put her in regular clothes.  There is so much to be said about putting a kiddo in their own clothes in the hospital.  Hospital gowns are just too sad on kids.  They suddenly look ten times better when you put them in regular clothing, so I always push for this when Ellie's inpatient.  I think I drive docs crazy when I ask over and over again when I can dress her... but it's important!

This morning, she got to wear her "You're just peanut butter and jealous" shirt.  Everyone's getting a kick out of it and Ellie is full of her big personality today.  She's flirting and showing off.  She's waving at everyone that comes in and blowing kisses.  THIS is our sweet girl!  We're hoping to get her surgical drains out today and they just let me put an HME on her trach instead of the cool mist collar.  Just one less thing for her to tangle herself in, right?  She's having a good day, y'all!  Praise God!

Road to Recovery

7.27.16:

Last night was NOT fun.  Ellie was coming out of anesthesia and as it wore off more and more, her pain was increasing rapidly.  She was writhing in pain.  I’d asked a nurse if we could get her something for pain – our nurse was attending to a code at the time, so things were a bit slow.  While we waited, Ellie would cry and suddenly stop.  Her apnea alarm on the monitor would go off, startling her back to crying again.  She’d stopped breathing for 22 seconds the first time, 20 the second time.  She continued the cycle of cry, stop breathing, cry again before we hit the call button and brought the attending, nurse, and resident in to help assess the situation.  We've dealt with sleep apnea before (related to her small airway), but never episodes of her forgetting to breathe when awake.

Of course in the midst of this, her O2 sats would drop (happens when you don’t breathe) and her heart rate would increase because she was so upset.  It was scary stuff.  We put her back on bipap so that if she stopped breathing again (which she did), it could take over and make sure she kept a decent respiratory rate.  At least this allowed her some rest. 

Thank goodness we hadn’t given her morphine yet or we might have really been in trouble.  For the next several hours, she continued the same pattern, but was no longer upset.  She would be breathing okay on her own for a minute or two, then stop and bipap would take over for 4-5 breaths before she'd kick back in again.

Through the night, Ellie was able to get some rest… Brandon and I were, too.  Dayton Children’s has the best parent sleeping arrangements (unless you’re in IMCU) of any hospital we’ve stayed in… hands down.  So that was a happy note on the night.

When I got up this morning, Ellie was awake and looking around.  She wasn’t upset and she didn’t seem to be in pain.  She can only have Tylenol and Ibuprofen for pain management.  I’m pretty sure I’d be throwing chairs at people if that was my pain management after what she’d gone through yesterday… but she’s much stronger than I am.  I got a little smile out of her and she liked that I was playing with her piggies.  Brandon is laying with her now playing with her animals.  She’s pretty darn happy about that, but a little violent as she kicks at him sometimes.  I think she’s mad that her arms are in immobilizers and she can’t suck her thumb or play with the toys we brought.  She’s also pretty mad at her IV pump when it alarms at her.  Fortunately, she’s no longer used to these background noises.

All in all, this morning is starting out much better than last night ended.  I’ll post again later today within this post to let you know how today has gone. 

Thank you, again, for all of your thoughts and prayers.  She sure keeps us on our toes.  Let’s pray for smooth sailing moving forward.

2:00pm update: Our little champ is really showing us what she’s made of today… in the best way!  She was awake this morning as I played peek-a-boo with her puppet and got some genuine smiles out of her.  She gave kisses.  With her arms still immobile, she reached her flexible little legs all over the place to play with her toys… kicking them all over her bed.  A therapy dog came in and she loved petting her ears with her piggies.

After mid-morning rounds, they decided to take Ellie off bipap and put her back on the cool mist machine.  She’s done great on that ever since.  So she’s breathing just as she should be.  Celebrations!

Speech therapy came in (the same therapist that worked with Ellie when she was a month old) and we were able to sit Ellie up in her bed and let her eat some food.  She was very ready to take some food by mouth and did great.  That’s my sweet girl!  Right now, she’s snoozing.  When she wakes up, she’s going to get a bath and some trach care.  Once she’s all cleaned up, I’m allowed to put her in her own clothes.  There’s something about babies in hospital gowns that’s just too sad.  Once she’s in her own clothes, I know she’ll instantly look like she feels so much better. 

Today is a great day.  

Sitting up enjoying some lunch.  She tried jello and string cheese for the 1st time today.

She liked yogurt the best (as always).

Surgery 7/26

I'm updating from my phone... so these will be short, but I'll try to keep you as up to date as possible :)  We arrived in Dayton at 8am and got everything ready for surgery.  This is the first time we were able to sleep in our own beds the night before surgery... kind of weird, kind of awesome.  Here are pictures of Ellie as we waited to go back.  She was getting very sleepy by the end.

Daddy made her a balloon!

11:30am: They just took her back for surgery.  It'll be about an hour before they'll start the actual surgery and surgery is estimated at about four hours.  I'll update when we hear more.  Thank you for all of the messages and prayers already!  #teamelliebug

12:35pm: Actual surgery is now under way.  They had to set an IV and intubate her and do a quick scope before starting surgery.  But that's where they are now.

1:29pm:  They have just started the "rib harvest" part of the surgery.  I didn't realize until now that they were using a chunk of her actual rib for the repair.  This feels so "Genesis"... you know, creating something new from a rib... cool stuff.

2:37pm: They have now started the grafting in her throat.  Ellie is doing well.  They estimate the surgery taking another hour or so.  They'll call us again when they're wrapping up.  She will go right to PICU from the OR and it usually takes a good hour or so before we're able to see her.  So, assuming all continues as planned, we should get to see her again in about two more hours.

3:28pm:  Dr. Elluru is almost done - should be wrapping up in the next 15-30 minutes.  They will then take Ellie right to PICU. She's doing great.  We'll have at least an hour before we can see her once she's in her room.  Ahhh, I love the "almost to the finish line feeling".  I'll post pics and more updates later.



4:20pm:  Surgery is done.  CELEBRATIONS!  She is now in recovery.  Dr. Elluru said Ellie had a beautiful little rib that came out easily and provided perfect cartilage for the graft.  Her stent will be in for three weeks and covers her vocal cords, so she will be completely silent for three weeks.  Once we're through that, she'll have to have the stent surgically removed (but we were assured that was no big deal).

So now we just wait to go see her.  We are so very thankful for all of your thoughts, love, and prayers that have carried us through today.  I'll update later, but it may be a bit.  Thank you again!  Praise God!

Glimpse of her post-op.  She looks great.

7:20pm:  The first few hours were uneventful, but Ellie's having some struggles with pain and breathing right now.  We're not sure if this is a result of anesthesia or what right now, but it looks like we'll have to be careful about pain management because she's having episodes where she stops breathing... like, she's had ten episodes in the past 25 minutes where she's stopped breathing for 20 seconds or more... or until we agitated her to breathe again.  Yuck.  This has not happened before.  Keep those prayers coming, friends.

Ready for surgery?

Bah – that’s a joke.  No one is ever READY for surgery.  Ellie is scheduled for the OR at 10:15am tomorrow morning.  We’ve done months of prep work to get her body ready for this day.  No, she will not be decannulated post-op.  It’ll take a while to get to that point.  But the plan is for her to come out with an airway that is normal for her size.  Are we ready for that?  Absolutely.  Are we ready for step 2 and 3 and 4 through 25?  Sure.  But step 1 right now is surgery… and surgery sucks.  Sedated procedures aren’t fun, either… but handing your child over for surgery is the pits. 

This is the first time Ellie’s had a surgery that wasn’t critical to survival.  OF COURSE she needs a usable airway if it’s possible… of course.  But her quality of life isn’t deteriorating by the day as we await surgery.  So… it’s a different boat for us.  A better boat, surely… but different.  Before, we didn’t have an option.  She was getting surgery or she wouldn’t be here.  Plain and simple.  Now… she’s thriving.  The risks associated with surgery are still minimal compared to the benefits of life without a trach… but it’s weird to feel like we’re “electing” for this.  It’s not elective surgery – she needs a stable airway just as much as the rest of us.  It’s not feasible to think she can go on with an airway that can’t support her for more than a minute when that airway can be fixed.  It’s just a mixed bag of emotions here, if that makes sense at all.

The road we’re ready for…

During surgery, they’ll place some of Ellie’s rib cartilage as a spacer in the back of her trachea to widen it.  They’ll also place a long piece of cartilage along the length of the front of her trachea.  This will both widen the subglottic area (the area that is so tiny right now) and support the front side of her trachea.  We found out two weeks ago that the anterior (front) side of Ellie’s trachea has collapsed between her voice box and her trach stoma.  Her ENT said this happens sometimes, especially with trachs.  So they’ll use a long piece of cartilage to reconstruct that portion of her trachea and give support.  They’ll also place a stent in to hold the airway open how they want it during recovery.  Three weeks later, she’ll go back in and have the stent removed (I assume this is just a sedated procedure).  Three weeks after the removal of the stent, we should (SHOULD) be able to start capping trials and let Ellie try out her new airway.  So at least six weeks post-op (think mid-September-ish).

Do you want to know what I’m most excited for?  I mean… other than not worrying about her pulling her trach out and turning blue in a few seconds??  I want to hear her laugh.  Ellie will be two before she’ll be able to be capped and we’ve never heard her laugh.  Take a second to let that settle.  That’s hard.  On the happy side… the kid laughs (silently) all the time… she makes the most adorable little face and tucks her chin into her chest.  Sometimes, she really enjoys herself and throws her head back.  But without the ability to make sound, she doesn’t audibly laugh.  My heart aches to hear that sound.  So that’s my focus going into tomorrow.  I have to hand over my very healthy (in her terms) baby… but I keep focused on the fact that when all is said and done, she’ll be able to laugh.  I can’t wait for that… I can’t wait to see the look on her face when she hears herself laugh for the first time.  We have so many exciting adventures awaiting us on the other side of this.  We need to learn to babble yet… to jabber and start to talk.  She skipped all of that developmentally.  She was so delicate when she was first here and barely made any sounds her first few weeks.  When she started to struggle at a month old, she just slept all the time.  She was trached at three months.  So all of that baby language stuff… we’re going to catch up on that soon.  All in good time.  Let’s laugh first!

Sitting pretty in her room... a little disheveled here. 

This was how happy Ellie was waiting for her procedure 2 weeks ago... cutie!