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!

The calm before the… surgery

We haven’t posted in a while… we’ve been busy enjoying life with our family.  Who can blame us for that, right?  Ha!  Isn’t that what we’re all busy doing this summer?  Packing as much life into our days as possible?  I’ll admit that we’ve not filled all of our days with wonderful adventures.  We’ve had plenty where we don’t want to do much and we lounge around too long.  We’ve had some where Brandon spends too many hours studying for his NCLEX (still waiting for his ticket to test).  There were days when I sit at my desk much longer than I should and cut into “family time”… but hey, we all have those, too. 

On the plus side, we have had lots of days so far this season where we played outside.  We are helping the boys learn to ride their bikes.  We let them play in their pool and let Ellie play in her little pool, too (read: it’s really a little Rubbermaid container that is small enough that she can’t fall over in it).  We’ve had sparklers and campfires and many nights at the playground.  We've done the festival thing here and there (food trucks, parades, rides, etc.).  We’ve gone camping (once) and just returned from a great vacation with family.  Summer has been amazing so far.  So we have no complaints here.  Brandon finished school last month, we are trying our best to keep the boys on a schedule, Brandon is just starting a new career which will bring with it a totally new schedule for him and our family, we are looking forward to moving in the next month, I landed a new job within the company I have worked for since 2009, and Ellie… she’s learning and growing and proving that nothing is impossible for her.  We have a family reunion and our first Down syndrome association family picnic coming up soon, too!  Things are busy and crazy and exciting… a little stressful at times… but stressful in a good way, that’s for sure.

Ellie and I watching fireworks

This summer is good – dare I say GREAT!  But things are moving along quickly and I can’t believe that July is already here.  For so long, July has been off in the distance, lurking ahead of us… waiting around the corner.  We’ve been anxiously awaiting July because July brings hope of a new normal for us… but July also brings a day of sedated procedures for Ellie (next week) and another major surgery on the 26th. 

Ellie is absolutely no stranger to sedation or surgery, but she hasn’t been fully sedated for almost a year (last September she was sedated for an outpatient scoping procedure) and she hasn’t had surgery since we were in Boston in May of 2015.  The surgery she’ll have at the end of the month is intense.  They’ll harvest cartilage from her rib cage on the right side and they’ll use that cartilage to expand the ring of cartilage just below her voice box in her trachea.  This means they’ll cut the ring of cartilage in her throat at the front and back and use the rib cartilage as a spacer on the front and back side to make the ring larger.  See the image below.  Ellie will have the surgery that you can see in the bottom series of images where there are anterior and posterior cartilage grafts.  While this is a major surgery… it’s not “open your chest up and reconstruct the inner workings of your heart” kind of surgery.  It’s not “your heart and lungs will be stopped for four hours” kind of surgery.  I’m still scared and there are still serious risks involved (just like any surgery)… but compared to what Ellie’s been through in the past, she can totally handle this!  She's had a few bouts with bradycardia (slow heart rate) over the past week... only one night that was really concerning, though.  I normally wouldn't be too concerned about it, but of course, Ellie has to do these things just a week before getting sedated, so cardiology had her wear a Holter monitor for 48-hours.  She didn't have any episodes while on the monitor.  Instead, she saved those for the first night off the monitor.  I'm sure she'll be fine for sedation next week, her EKG looked okay this week.  With the type of repair she has with her heart, there is always a risk that as she grows, the tissue used to repair the septum won't transmit a signal as normal cardiac tissue would.  So there's a chance that as she grows, her heart rhythms may change.  We're keeping an eye on it and right now (other than a few nights where she threw us some curve balls), she seems just fine.  She just likes to keep us on our toes... turkey.  Cardiology said the results from her Holter looked just fine, though.

Back to the surgical plan:  her trach stoma is just below the surgical site here, and that should actually help her heal a little faster.  She will not need to be intubated for the procedure.  That’s a great thing.  Once she heals (however long that is), we’ll be able to start capping her trach and seeing how well she’s able to use her new airway.  Right now, capping is absolutely not an option.  Her current airway is too tiny to breathe in through.  We can use her speaking valve because she is strong enough to force air up and OUT of her airway, but she’s not strong enough to draw air IN through her upper airway now.  That’ll be something she’ll be able to do after surgery.  If that’s successful, she’ll have a sleep study and some other trials and such to do… and eventually, we can start to look at life beyond her trach.  What a thought, right?  We have no idea what this timeline looks like right now.  I’m hopeful that this could happen within a few months of surgery.  But there may be other things that we need to look at in this process (tonsils, etc.).  We’re taking it one step at a time, but this is a very big step, y’all.

And as much as I LOVE her Gtube (never thought I would ever say that I LOVE a feeding tube… but let me tell you, they’re amazing), it looks like we’ll need to get rid of that once we get rid of her trach, too.  And once that’s gone, we’ll have a baby that’s free of accessories – WHAT??  I mean, I’ll forever hold other babies and adjust them a certain way in my arms as not to accidentally pull their G tubes out (if I’ve held your baby/toddler in the past two years, I’ve done this to them… sorry, it’s a habit).  We’ll have to get rid of her G tube because Ellie has decided that it’s her new favorite thing to pull at and pull out.  Gross!  If we don’t keep her in a onesie, she’ll pull that sucker out several times in a day and hand it to me like she’s doing me a favor.  Not cool.  On the plus side, it’s created a learning opportunity for me to calmly teach our boys all about tubies and how they go in and what all I need to put them back in Ellie’s belly.  My boys know entirely too much about tubies and trachs.  In fact, they recently asked me for coloring pages where they could color their own Gtube buttons.  We live in a weird little subculture over here – don’t judge us.  On the plus side of this, we don’t really NEED her feeding tube anymore, either.  Ellie still gets one tube feed at night, but this is only because GI is really hesitant to pull all night feeds at once.  We have to take baby steps any time we want to make changes to her feeding regimen.  She’s taking all of her food by mouth (unless it’s the week we were on vacation and she decided that there was too much going on for her and she had no interest in eating or chewing or any of that business).  And thus… feeding tubes are my friends.  But just like any toddler who is able to eat by mouth, she will eventually eat when she’s hungry enough… I’m sure she’ll be fine without her tube.  I’ll just have to get over not having that amazing safety net that it has provided for so long… and cherish not having to give her medicines by mouth until we have to take it out.

Those are my thoughts as we march forward this month.  We have two friends that are also facing major surgeries next week… please keep Tillery (going in for surgery on her skull) and Aberdeen (another open heart surgery) in your prayers, too.  It’s a very big month for our friends.  We also have a friend who just gained her angel wings this past week.  Please pray for sweet Sofia’s family.  Her smile brightened our world and her momma was a constant source of strength in the RMH and she helped us navigate the world of trachs and ventilators.  This was a momma who (in the midst of spending years in the hospital with Sofia) secretly worked with the concierge team at Cincinnati Children’s to surprise families by buying them lunch from any local joint they chose.  What a wonderful surprise this was!  Chipotle in the middle of my work day during a crappy week in the hospital??  What a way to brighten someone’s day.  So… if you really want to pay it forward, call Best Upon Request at Cincinnati Children’s, offer to buy lunch for a family having a rough day.  I promise they’ll know of families having a rough day… and the Best Upon Request team does all of the running for you… they take care of all of it.  Do it in honor of Sofia and her sweet momma.  Do it because those parents will never forget the kindness of a stranger buying them lunch.  I promise!  That’s Hustling Kindness!!  If you want to do something a little smaller, buy a few meal cards from them and have them deliver them to a family in need.  Having a lunch ticket delivered from a stranger is awesome, too.  Let's keep Margaret's kindness going, y'all!

And on a really bright note, here are some pictures from our vacation last week.  I was having some serious anxiety about taking a trached baby to the beach.  Sand + water + an opening in your neck that leads straight to your lungs is certainly a recipe for disaster.  However, with months of preparation and the encouragement of family, friends, nurses, and the respiratory therapist with our supply company, we ventured out to the beach and the pool and we had a wildly successful vacation.  My family has been traveling to Fripp Island since 1983 (when my mom was pregnant with me).  Ellie’s first trip was in my belly when I was 30 weeks pregnant with her and this was her first opportunity to put her piggies in the sand.  We stayed in a house big enough for the 28 people in my family and my dad’s sister and her family traveled down at the same time to join us.  It was amazing and a much-needed break.  Can we go back yet?  Until next time, Fripp…

 Baby on the beach... trach covered, sand-free mat under her "pool"... she loved it

 And the pool - she was crazy about the pool, too

 The boys enjoying the waves with Daddy

Ellie petting a gator at the Nature Center.  
The boys got to hold snakes and visit the turtle day care.  Adorable!

One of my favorite pictures

And for reference, here is what we looked like last time we were in Fripp in 2014

And of course... we came back in time to celebrate July 4th.  We watched fireworks and took the boys camping for the first time.  Sleeping in a tent was just as I remember... felt just like sleeping on the ground, lol.  I'd do it again a thousand times - those little boys had so much fun!  Thank you all for following along with this ridiculously long post.  I'll keep you posted next week on Ellie's procedure and again at the end of the month when she goes in for her surgery.  Tracheoreconstruction: here we come!!