It's hard to believe it's been so long since I wrote about my girl.  It was very therapeutic for me early on, and I hope it will be again.  

I'm writing from a hotel room in Punta Gorda, FL.  The last 7 months I've been working down here.  This may have been the hardest 7 months of my life, and I know Lindsay's.  Bentley and Ally are in 2nd grade now.  Bentley is now 10 years old.  She and Ally are in the same grade, and they will be until graduation.  We held Bentley back twice.  That's a story and a blessing in and of itself.  However, this year B has only been to school 3 days.  Ally has been flying solo often as she doesn't have her sister to run toward and give a hug to in the lunch room or down the hall.  She's been a boisterous and spirited 7yo as usual, but needs her family back under one roof on a daily basis.  This time apart has been a challenge for all of us.  

 Always taking an opportunity to not only provide B with the best resources possible, but also take advantage of modern technologies for her, I wake up each morning and open her camera on my phone to take a quick check on her before I start my morning routines.  most mornings Bentley is wide awake at 330am central time.  She's playing with a pie tin or fireman's hat, or solo cup, or some other item with an attractive texture.  I'll catch her wanting something different and waking up her mother by pulling off her bipap mask to make an incredibly annoying sound of whooshing air, which we can't help but wake up to.  Lindsay walks in, finds a few toy options for B, and goes back to bed.  This exercise happens from 1 to 15 times per night.  We don't often count, but one night I watched the "game film" and counted 13 times Lindsay had to go fix her mask and give her a toy.  

I digress somewhat.  I miss my girls.  I look forward to getting back under one roof soon.  For now, know that B is a growing 10yo.  She now has a GJ feeding tube, and is fed by tube feed around 16hours per day.  She requires quite a bit of airway support by means of a bipap device during the respiratory season.  She's finally gaining some weight.  Now weighing in somewhere just shy of 40lbs.  Her home-based step-down unit has in full swing and we are building a stable of nurse babysitters to help give some respite to Lindsay and allow us to give Ally some much needed exclusive attention.  The daily challenges continue.  We are grateful for the commmittemtn of our parents as Mimi and MommaB have supported Lindsay every week since I started this new job in August. They rotate each week and even Bentley has picked on the rotation as she communicates her anticipation for the next grandmother each weekend.  

We are grateful for the opportunities God places before us, and have confidence his will is at play each day.  Thank you for your interest and support of our family.  

The breathing tube is out.  Just pulled it, about an hour ago.  Placed on BiPAP.  So far so good.  We can usually tell within 2-4 hours if she is going to fly.    

PICU Day 9.  We've had a rollercoaster of a week.  Well... not an American Scream Machine week, but a Miracle Strip kids coaster kind of week.  Bentley wanted to drive us a little crazy a few nights ago and start running a high fever while throwing up (all while on the ventilator with tube feeds running).  The anxiety only took one year of Lindsay's life, could've been worse.  Her lung started allowing some air back in on Thursday.  Since then, she has progressed pretty well, all things considered.  Slow but steady.  

It is very obvious Bentley is bored out of her mind.  Around Day 5 she started pulling out her pigtail and fighting us when trying to keep her on her side.  She hasn't really wanted us touching her until the last day or two.  We tried putting her Angel Ears (what we call her cochlear implants to Ally) on, but she basically told us "No Thank You".  She DID get a real bath last night.  Not a bath-tub-bath, but a wet-to-the-bone with a wash basin and all natural dye-free, scent-free, suds-free, gluten-free soap.  When the nurses aren't looking I may use some Dove.  We feel good with the progress.  Her docs, nurses, and theraptists have been taking great care of her, and are very in tune should she take a turn and need another couple days of rest.  

Thank you for the continued prayers.  This evening will tell us a lot.  Although we are ready to spend Christmas here, I would rather her sitting up and able to eat chicken salad.  

At least we can say it has been a productive week.  Ally is now to the point of Rotten (with a capital R), thanks to Mimi and Pop.  Lindsay has signed up both of our Team Bentley Mercedes Marathon BellRunner teams, you can donate by clicking the links.  Mom came to town and washed our sheets.  Three big wins.  More updates soon.  Have a Merry Christmas if we don't see you.  I've got the Bing Crosby playing in her PICU room, sorry if there are any Scrooges down the hall - I'll give you a Christmas Tree Cake. Mele Kalikimaka!

Regarding our Marathon teams: I have committed to the relay AND Half marathon this year, for some crazy reason.  For those who don't know, the primary beneficiary of the Mercedes Marathon is The Bell Center for Early Intervention Programs (where Bentley received the majority of her therapy until she was 3yo).  I am proud to say I have been asked to serve on their Board of Directors for the next few years.  We are so incredibly thankful for the impact they have had on Bentley's development, and our support system.  We run the marathon as official BellRunners, supporting the Bell Center with any money raised.  If you would like to run too, sign up, or let us know.  We can always start another team.

​Hey crew! Yeah yeah.  I know it’s been quite a while since I provided some juicy updates on Bentbug (I didn't realize it had been this long!).  Well, you just got lucky enough to catch me with some down time.  Lots of it.  She’s back in the PICU.  I know, none of us want it, but we’re back.  Bentley came down with a nasty respiratory virus, parainfluenza. She has been dealing with a chronic cough for a month or two.  It appears we were fending off anything serious thanks to all the nice tools we have at the house (chest percussor, suction catheters, bipap, oxygen, and eggo waffles).  However, this virus hit hard and fast.  Wednesday night she got sick and we could tell her respiratory status was becoming compromised.  We watched her closely for a couple of hours, but decided it would be best to go ahead and make an ED visit.  Within an hour, she was needing significant ventilation support.  So, we intubated her. 
 
She has been running a fever constantly since admission, and dropped her left lung yesterday. It still sounds closed to me.  Right now, we are in a waiting game.  Let the virus take its course.  Let her little body recover from the trauma.  Let the ventilator keep her breathing stable.  She is one tough cookie, that’s for sure.  It is obvious she is very unhappy and does not feel good at all. 
 
It is kind of funny.  Bentley has a pretty keen sense of where she is, when she has been there before.  We don’t even bring her CI’s up here anymore because she refuses to wear them in this building.  She doesn’t want us to touch her, and she doesn’t want a toy.  The only thing she wants is her bunny.  I can respect it, but it breaks my heart at the same time.  She just sits there, in a silent darkness with a tube projecting from her mouth and an assortment of wires and tubes stuck to various parts of her body.  How she manages, I will never know.
 
Outside of the hospital Bentley has been doing fantastic.  She is growing like a weed. She is so tall.  We hardly feel it when we hold her, but see it when another person is.  She is 5!  It is so hard to believe.  Bentley has gotten good at scooting around the house on her little radio flyer thing.  I think she has a good sense of where the playroom, kitchen, and den are.  Not sure how often she ventures beyond there, but she knows those rooms.  She is now in school 4 days per week.  Bentley loves school and school has loved Bentley.  It has been so good for her.  We can tell a difference in her when school is out, or when she must stay out for a period.  She just gets bored at home.  School provides the variety of stimuli to challenge and develop her as a child.  She learns words (expressed as sounds we can understand), songs, books, toys.  It truly is amazing to think about what all she has picked up because of being in school.  We noticed this even when she was at The Bell Center.  That’s probably why she knows half the songs she does. 

One thing that hasn’t changed much is her diet.  She maintains a consistent affinity for waffles, chicken salad, and pb&J sandwiches.  There is not much variety there.  Oh, of course, she loves French fries too.  Nothing healthy, all things starchy and fatty.  Lindsay mixes chopped up Strawberry into her chicken salad, along with extra mayo, to get fruit in her.  The only vegetable we can get in her are veggie straws (and let’s be honest, those aren’t any better for you than Cheetos).  I hear she is eating icecream at school, but she doesn’t do much with us.  She will take down some yogurt.  So, I guess her diet is expanding some, but it’s still narrow. 
 
Music is a constant love of B’s.  We listen to all the Disney songs, as Ally has grown to love the movies.  There are a few B is not fond of, but she lets you know that quickly.  She enjoys music with her breakfast, lunch, and dinner.  She also wants music at pretty much any other point of the day.  If you put her in the car, you better turn on some music quickly or she will pitch a fit and pull her ears off.  We have a CD of songs from Bentley's time at The Bell Center.  As much as I love hearing those kids sing the same 50 songs over and over and over, I could use a break for a while.  I’ve started adding some piano and classical into her mix when I’m DJ’ing.  B loves a piano.  She can sit and play with one for hours.  I think to true tones from a piano must translate crisply through her cochlears.  I could be wrong, but that’s my theory. 
 
Bentley is growing into her role as big sister.  She and Ally get along well.  We still must work with both when it comes to sharing, but for the most part they are doing well with it.  Ally has been such a good little sister.  She gives B a hug and a kiss before bed every night.  She likes to climb in Bentley’s bed with me during stories each night.  I lay down next to Bentley and Ally lays on top of me, with her blanket and about 6 stuffed animals.  Although she used to push Bentley’s hands and feet away from her during this time, now she wants Bentley to be touching her.  B usually throws a leg over my arm and Ally likes to put her arm down there so she is being touched by Bentley too.  It’s sweet.  The first thing Ally asks about when we get her up in the morning is where sissy is.  She wants to know if Sissy is eating breakfast, in bed, or somewhere else.  The morning we left for the hospital she was cued in that both of us were gone, and talked through it with Lindsay (I think Lindsay posted that on FB).  I’m proud of the two of them.  They are going to have a unique sistership.
 
Well, that’s all for now folks.  I feel as though I always bring this to you with a selfish ask for prayers, but here we go again.  I pray the Lord continues to breathe his breath into Bentley’s lungs, and use these nurses and therapists to bring her through to recovery.  She has a great care team and we do feel spoiled with the fact that all the attending physicians and senior fellows know Bentley well.  We have seen some of these guys mature through their entire PICU fellowship, and I’m confident Bentley has contributed to their wisdom as a provider by challenging the norms.  Thank you for your continued prayers and support.  Thank you for caring so much for my Bentley.  We’ll keep you updated as this visit progresses. 

​Well, it has been some time since we provided an update on my growing Angel.  Our last updates almost exclusively recounted our short vacation to the hospital.  Bentley has been learning and growing in a miraculous fashion since before that stay, and I know I have failed to provide some stories of this development.  She continues to amaze me every time I look at her.
 
I sit this morning with my coffee as Bentley’s oxygen concentrator hisses and hums in a melodic tune we have come so fond of around here.  I’m not sure I can sleep without it these days.  We returned home from Children’s right as February crept in, with a small collection of equipment.  Bentley was recovering so fast it was as if she had never been admitted to the hospital at all.  We kept her on oxygen for a few days, weaning to night time only for a couple of weeks.  Eventually we felt confident in her ability to maintain her oxygen and just discontinued it all together.  I was very pleased we were able to get a suction machine this time.  In the event she ended up really congested or stopped up I can suction her nose and upper airway.  However, we didn’t need it when we got home.

Bentley did lose some strength during that stent downtown.  However, Lindsay being the amazing therapist she has become, quickly helped get that back and continued to push Bentley to progress further.  Bentley was able to return to school following flu season.  Naturally we didn’t want to risk her catching something during the peak of the season and held her out for a while. 
 
Through the winter we were able to take part in a few fun events including the annual Mercedes Marathon.  Bentley and I, again, proceeded to dominate the super hero Bell Center 10-meter dash on Saturday before the big race.  You should have seen the determination on Bentley’s face as we approached the starting line.  She appeared as if she was about to race an Olympic event.  I actually had to calm her down.  I’m pretty sure we won our heat, and although Bentley wanted me to petition for a tournament of Bell Center participants, following her victory and inflated ego, I reiterated not everyone was as prepared as she was and we would push for that next year.  Lindsay, however, decided it was the perfect year to run the half marathon.  Butch and Alana kept Bentley and Ally the morning of the race so Lindsay could run it.  I had a blast with the half marathon this year.  Shortly after Lindsay started I walked back in the hotel and got a hot coffee.  It took a good hour to warm back up, and then I proceeded to attempt navigating the city so I could see her a few times along the route.  That failed miserably as I found her once, and then got lost with the traffic rerouting and missed her finish.  Bentley and Ally were there by that point and cheered her across the finish line.  Lindsay was so inspiring I have now started my morning routine with a brisk jog around the neighborhood.  I may even do the relay at the next Mercedes…we’ll see.  But I really am running, so hardcore.

Bentley has visited her favorite downtown hotel 4 times this year, three of those since May.  We are finally getting a jump on some of her respiratory woes, but she puts us through the ringer that’s for sure.  We have come to the conclusion we must treat her more like a child with CF.  As she develops a cold, which has been all summer, she is unable to expel the secretions or snot.  The pooling snot provides the perfect environment for bacteria to grow and turn into a narly infection.  We have been catching it more on the front end recently, with a few close calls.  The problem is, at the moment she has been super snotty for a couple of months and we are in the perpetual routine of breathing treatments, chest percussions (I bought a electric percusser and it is the best thing ever, got it during our last hospitalization from Amazon), and naso-tracheal suctioning.  Occasionally we put the NG tube back down to get her some fluids.  She tends to not want to drink when she is super snotty and then heads toward dehydration, quick.  She has been acting as happy as usual lately, but stressing her mother out with coughing spells and snot plugs.  I am currently awaiting FDA approval of a new oximeter with Bluetooth tethering so I can get some remote monitoring going from work (the inner nerd in me coming out).  I figure if we can monitor patients at the hospital remotely, why can’t I monitor my child at home?
 
In the development world, Bentley is growing like a weed.  She is so smart.  She has mastered a little more sign language, but most importantly she is singing!!! Like, not with words and all, but with her voice and “Ahhhs”, “ooohhhhhs”, and “eehhhs”. She keeps the beat right in line with the music and she can absolutely belt “The Wheels on the Bus”.  Other favorites of hers are “God Made Me”, “The ABC’s”, “Fraira Jacka (sp)”, and “Can’t Stop the Feeling”.  HAHA jk on the last one.  But seriously though, she is singing constantly and it is the most beautiful sound on Earth.  She is my Angel.  Ally hasn’t started singing along yet, but she does dance along.  Her dancing is hilarious.  B really is expanding her song catalog and is surprisingly spot-on with pitch and rhythm.  –hold on, her oximeter is alarming, let me go check it
 
She’s good -She sleeps on oxygen because we also think she has sleep apnea. However, she has learned she can pull it off when it tickles her nose, and then we usually get startled by the desaturation alarm a few minutes later.  
 
Bentley has started back to pre-school and she has been so excited.  When I get home she can’t wait to tell me all about it.  She has the best teacher and aids and loves to take PB&J sandwiches in her Pottery Barn lunch box.  Lindsay went to school to read to her class recently and B did the motions to the book the entire time……ok, so Lindsay had to help her.  I think B just had a little stage fright. 
 
School has been good for her though, and Lindsay.  B is getting to hear more input from children and other adults.  She is exposed to other toys and challenges.  I think it has played a big part in the strides she has taken recently.  Mad props go out to the team at Hall Kent, we appreciate you guys.  Also, she has around more little kids her age.  I think some of them really like her too.  -Hopefully not the boys, I can’t handle that right now.-  But it gets her out and develops relationships with others.  I spent quite a bit of time with the special needs classes when I was in high school.  Those kids need exposure to “normal” more than you can know.  Especially those like B who are fortunate to show no cognitive impairments, just physical and sensory.  I do pray for her friends as she grows up….l’ll give you that one candid emotional insecurity of mine. I pray she has friends.
 
Ok, enough of the sappiness….  Bentley has a new talking tool we get to keep for a month or so.  It is this Dell tablet that has a really fancy software on it.  It allows her to push “buttons” and the tablet talks what button she pushed.  We call it her Talker.  She can push a button for “Drink”, “Dad”, “Ally”, “Mom”, “Eat”, and many others.  This thing is cool.  And really expensive (primarily b/c of the software).  We are working on getting one of our own but may need the assistance of some grants to fund it (If you know of any grants to help send me a link, I'm just googling "special needs grants") .  Either way, we are going to get one for this girl.  Every time she pushes one of the buttons her face just lights up.  She already gets what it does, she just has to work on remembering where each button is.  It’s really cool and amazing to see in action.  The technology that is developing around special needs is just fascinating.  The whole eye movement controlling computers blows my mind.  We don’t want one of those for Bentley though, her crazy eyes would crash Tesla’s smartest car.

​Another super cool addition to the house is this rolling flying saucer (don’t know how else to describe it, and sorry I don't have a picture).  It’s a Radio Flyer toy that has made Bentley mobile in the house.  She is now rolling around the kitchen and almost making a mess with the cabinets.  The other day Lindsay was actually teaching her how to open cabinets and pull out he pots and pans onto the floor.  Ally was helping teach these phenomenal skills.  She is a pro.  Bentley hasn’t quite mastered it, but is close.  I am sure I will return home one evening soon and B will have Lindsay and Ally in a tizzy with the extraordinary mess she has made. 
 
Ok, I’m spent.  Not much else to talk about.  Bentley turns 4 this weekend and we may be having a small Itty Bitty Peanut Festival themed party for her.  You are all invited. 
 
Ally is growing like a weed too (90%ile in weight) and being a great little sister.  The first thing she wants to see in the morning is “Sishy”, that’s what she calls Bentley.  She wants to play with B more than B wants to play with her, but time will help that.  B is coming around to a sister, I just don’t think she realizes she has a friend to play with now as she still selfishly hogs any toy in her vicinity. 
 
Thanks for the keeping my sweet girl in your prayers.  She is 4 years old!!!!! My how time flies.  I feel like just yesterday I was sitting in the lobby of Children’s South seeing EK play in the corner and praying fervently for something I could not yet comprehend.  Thank you all.  It takes a village…
 
Check this podcast out: Lenya the Lion.  

Did I mention we moved this summer too? Yeah, Bentley was intubated the week prior.  It was fun....NOT.  But we did move into a great little house.  We absolutely love it and feel very fortunate to have found it.  My first home purchase so I really feel like a grown-up now.

My plan is not to only provide updates when Bentley is in the hospital.  However, it seems that is the only time I have long stretches of not a lot to do.  I have plenty to do, but you know what I mean.  So…. Bentley is back in the hospital.  Currently on day 8.  This time it is not as critical and terrifying as our visit in January.  B came down with pneumonia.  At first it was just a cold.  We tried some oxygen and suctioning at the house, but Lindsay felt like she was getting worse.  Shortly after getting to the doctor’s office an ambulance was called and our weekend was shot.  Lindsay left Ally at the pediatrician’s office for me to pick up after work.  It was pretty funny seeing Ally just chilling with one of the ladies in the office.  A is a happy little girl.  Funny story: the ambulance driver asked Lindsay if she wanted to ride with them or drive her car and meet them at the hospital.  Lindsay snapped back “I’m paying for that thing; you better believe I’m riding with you!”  I love my wife.
 
We spent a lovely 5+ hours in the ED.  I got a tour from one of my old nursing school cronies which was cool.  However, that was a mighty long time to sit in the ED.  Not fun.  One of our favorite PICU docs came down to check on her, but they felt as though she was not quite bad enough to go to ICU.  We ended up in Special Care, it’s like the ICU step-down.  They took good care of B in Special Care.   We were pleased, overall.  Saturday Bentley remained pretty cruddy and was not very active at all.  I held her a lot.  We watched Woodlawn, good movie.  Into the evening we started to get the feeling that Bentley just wasn’t doing as well as she should be.  She wasn’t putting up much of a fight during treatments and was letting us do PT exercises without flinching.  That’s not our Bentley.  We voiced our concerns to the nurse and she promptly paged one of the Residents.  Dr. Jorge, I’ll give you a shout-out.  I appreciate the thorough assessment and concern given our observations.  Following a few quick lab results and a x-ray Bentley was back on the radar of the PICU team. 
 
Bentley was retaining a lot of CO2, her pH was looking bad, and her x-ray was worse than on admission.  All “monitor” vital signs (BP, HR, O2 sat, and RR) were normal.  Given her demeanor since admission I would not have expected the staff to pick up on those little things a parent notices about their child.  She didn’t budge to lower extremity stretches, she didn’t move much to suctioning, and she just seemed out of it. ...The things only a parent will notice. PSA: If your child is in the hospital and you think something isn’t looking right or they need some attention, you are probably correct.  If we hadn’t asked the question, she could have gotten much worse before anyone noticed. 
 
The ICU team acted quickly.  They immediately felt as though intubation was the best option.  We conceded and went back to the waiting room while they did their thing.  Lindsay and I said a prayer, thanking our Lord for our amazing daughters, and watched an episode of Suits to distract ourselves and stay awake. 
 
Sunday was a steady day.  Nothing too exciting happened.  Still on ventilator, still requiring a good bit of support.  Not on sedation.  I did get her to listen to some music for about an hour before bedtime.  She also let me read her stories.  For the most part she did not want her ears on.  She never does when she is sick. 
 
The rest of the week was coupled with slow progression and the occasional step backwards.  We were feeling very hopeful on Thursday evening and then again Saturday morning that the next day would allow extubation.  In each case we were wrong.  As of today, Sunday the 24th, she is still on the ventilator requiring a fair amount of support.  It is hard to say exactly what is causing the set backs but it is likely her neuromuscular issues are playing a part in it as well as remnants of the virus.  Oh, she had rhino virus, also known as the common cold.  It turns out that thing was more than a booger.  The docs are taking things very slow.  They did a CT of her lungs today to see if there were any indicators from it as to what is going on.  Some signs of bronchiectasis, but not sure of the plan following that discovery.  We’ll continue to take it one day at a time and see where we end up. 
 
Ally has been getting spoiled rotten during this fiasco and we are extremely grateful to our sisters for their support.  She spent a few days with Melissa and a few days with Jessica.  At each location she is being fed as much as she can hold and getting more attention than she gets at home.  I don’t think she is complaining.  Three of the 4 grandparents are here and helping out as well (the 4th has been dealing with the remnants of a month long power outage at the farm, gross).  It just so happens we closed on a house a few hours before heading to the ER.  The plan was to spend the weekend moving, but Bentley cramped that to a degree so Mom, Alana, and Butch stepped up to the challenge of helping us get the move started.  They have also been a huge help filling some coverage gaps with Ally and Bentley.  They even gave us a few hours of freedom to swing by a wedding reception for a friend.  Huge thanks to our family, we couldn’t make progress this week without them. 
 
Sorry for the bum update and the timing.  I actually had a good update started I was hoping to post this week but Bentley changed those plans.  I’ll finish it and throw it up soon so you can read about all she has been learning and accomplishing since our January hospital stay.  Thanks for the texts and prayers for this little girl.  She’s a champ to be putting up with all of this stuff.  I would have gone crazy by now. 

Our wonderful 3 week vacation is over.  Bentley made it home last night.  She was sent home on a little oxygen and with a few other toys to help us keep her lungs clear.  

She immediately wanted to play our falling game (in the video last week), which i am not willing to play yet.  We sat her down on the rug and she wanted to scoot across it to the hardwood floor.  The funny thing was, she is too weak to push herself backward. So, she was basically spinning on one cheek and turning in circles.  Lindsay has some work cut out for her to help bring her strength back, but I don't think it will take too long.  

I can't thank enough people for all of the support over the last three weeks.  The prayers for Bentley and her medical team, Thank You!  Our family has been awesome.  Mimi and Pop have been man-handling Ally.  Momma B and Poppa helped out up here, keeping Lindsay well rested, and letting both of us get some sleep those first few stressful nights.  

I can't thank everyone at Children's enough.  From what I am told, a large number of the nurses, doctors, and therapists that treated her in PICU stopped by to see her yesterday.  You guys are awesome!  Thank you!

So thankful God chose me to be Bentley's dad.  She's His, but mine for now!

We met Jace's family in PICU.  He's a tough little fighter and his family could use your prayers too: https://www.facebook.com/JacesArmy/

I sit here so grateful.  Through the hands and decisions of those who chose to follow His calling, even if they didn't realize it was Him calling them into medicine or nursing or respiratory therapy, Bentley is recovering.  We're not home, but I think I can see it from here.  

Bentley is doing amazing.  At this moment we are up in the Pulmonary Care unit, and I see her hands waving in the air above her bed, above the pillows we have guarding her from the rails.  I think she is trying to say "Daddy, I'm still up.  You feel like playing?"  Never mind, she just pushed me away, I interpreted wrong.  

She is doing amazing.  She is back to smiling, she ate half a pancake for breakfast (a big pancake), and a grilled cheese for dinner.  I think she was hungry.  Thank you to everyone who has prayed for her, her care team, her parents, and any other avenue of this bump in the road.  Thank yoU!  Thank you to everyone who cared for her. You're awesome!

Tonight I lift up the families still in the PICU, and those who will be in the future.  I could write pages about them, and I don't even know them.  

BIG DAY!! Bentley was extubated around 1030.  She has done great so far.  You could tell it took a few minutes for her to figure out what happened, but she has been a champ.  

She was extubated straight to a high flow nasal cannula.  No BIPAP mask this time.  About 4pm we gave her the first honeybear of apple juice, and she sucked it down faster than she ever drank her juice before.  A few minutes later she downed half of another one.  She has been playing with toys and smiling a good bit.  She still hates being suctioned, but it forces her to whine a little.  Her sweet voice is fighting through raspy vocal chords and chapped lips.  

I am elated.  This time last extubation we were still on pins and needles, with very little confidence she would go the distance.  I feel good about this one.  The respiratory therapy is scheduled pretty frequently.  A lack of a cough is my only concern at the moment.  We still have suction and good therapists, so I think they can compensate.  

Prayers of praise and thanks tonight, along with some continued support.  Great people up here.  Very thankful for all of their hard work.

Today may be the day.  We are waiting on the doctors to round.  All day yesterday they were saying "tomorrow".  

Unfortunately, today Bentley is looking kind of groggy.  As if she doesn't feel good or is really tired.  Not sure what's going on.  

Hurry up. Wait. And see.  

​It’s almost Friday!  I plan on getting crazy Friday night.  Might just buy an ice-cream Snickers in the Market. 
 
Bentley has had a good few days.  She is still on the ventilator, but her chest tubes came out today.  Each day has yielded some hesitation toward removing the breathing tube, so they have left it in.  Lindsay and I are both somewhat comforted by it, but do want to see progress. 
 
Yesterday morning the team decided B was needing to train for the Mercedes Marathon.  Therefore she needed some CPAP trials as sprints for some endurance training.  She did well as each trial got longer and longer.  Although she was showing improvement, the docs just didn’t feel like she was quite ready today.  She did well today, but not quite as well as yesterday.  Not exactly sure what tomorrow holds or what the plan will be.  Tonight it’s aggressive respiratory therapy and dreaming in between.
 
She has been getting plenty of rest, and appears to have gotten some good PT from mom the last day or two.  So that’s good.  Continuing to pray for her body to rest, build strength, and her lungs to completely expand and clear up.  Thank you !!!!!