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.