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 !!!!!

Goodness.  The two week mark is 6am Tuesday.  Let's review the last two week shall we?

5 Chest Tubes
3 ETT Tubes
2 BIPAP machines
1 Ventilator (it never left)
4 NG tubes?
2 bronchoscopies
2 Central lines (including 1 PICC)
7 PIVs
12 different nurses +/- 1
5 or 6 Respiratory Therapists
3 Attending Physicians
4 Fellows
5 Residents, maybe just 4
10ish meals from Tazikis
1 chip salad
countless other fun facts as we go (this has not been reconciled w/ the medical record, I could have a count wrong, didn't do a timeout before typing, hahaha (hospital humor))

This is a short list compared to some patients up here.  It's just kind of fun to count some of the stuff once you stop to think about it.  No telling how many cups of coffee have been consumed in this room, or helicopters I've watched arrive, or dirty diapers, or parking passes we've validated, or trips to the waiting room to eat.  For anyone who works in a hospital, it's always a good idea to spend some time on this side of things, as a reminder of why you do what you do, and why the little things are so important.  I shoot for one inpatient stay every 6-9 months.

Sorry, the psychosis is setting in.  Bentley has had a good few days.  She got her chest tubes Friday night.  Since then it has been pretty chill.  She is hanging out on the ventilator, chest tubes still in.  Weaning the ventilator, but not aggressively.  B has definitely come back around, neurologically.  She is showing that her strength is returning and so is her attitude.  The problem today is that I think she is sick and tired of being her.  She barely slept last night and she didn't sleep all day today.  This evening she got a little happy juice flowing through her veins and has been sleeping since.  I think a good night sleep will do the body great.  The couple of hours I played with her this evening she was hyper sensitive to everything touching her body.  She is aware of me leaning on the bed, and slightly shaking it.  She needs sleep.  Like, she really needs sleep.  Please pray for her sleep.

Tube out Tuesday, maybe Wednesday...We'll wait on the docs and play it by ear.  she's not going anywhere.

Sorry I forgot to BCC the email list tonight, I just realized that.  #LateNightProbs

​Bentley is still at it.  Driving her mom and dad crazy.
 
On Friday Bentley spent the day on the ventilator.  She was bronch’d again with nothing significant found.  Friday night she decided to pop spontaneous pneumothoraxes (sp) in both lungs.  This resulted in chest tubes being placed on both sides, again.  From what patients tell me, chest tubes are rather painful and uncomfortable.  So we have added some pain medicine to her schedule to help with the discomfort.  She also received a PICC line for a more sustained IV access.  Pulmonology was brought on board to help with the brainstorming as to why she is having so much trouble respiratory-wise, and to help as we prepare a long term plan for B.  She has played with some noise making toys today, but she has not had much activity otherwise.  On an up note, Ally came by to visit today, Bentley’s sister.  She has been with Mimi and Pop for the last week.  Still cute as a button, fat, and happy.  Bentley still doesn’t care much for her, so we left her in the waiting room and rotated through.  I took a nap with her this afternoon.

​It is obvious Bentley has trouble finding a comfortable position.  She is also getting somewhat resistant to anyone or anything touching her.  So many stimuli have been painful lately, she winces in anticipation when I try to hold her hand or rub her leg.  Keeping her ears on would probably help, as we could all talk to her before we touch her, but keeping them on in this bed is not the easiest thing.  In addition, the noise on an ICU is not always “clean” noise.  There is lots of commotion, hisses, rattles, bells, and talking which is not something she usually enjoys hearing for long periods of time.  We have done a pretty terrible job of letting her know what is about to come, mostly because we haven’t kept her ears on.  Everyone has been pretty good at talking to her as they work with her.  Mom and Dad just need to be more consistent with letting her hear.    
 
Please pray for all of us, nurses, doctors, techs, therapists, mom and dad, to be more aware of ways to improve the sensations and environment of Bentley’s room.  I can only imagine having so much negative stimuli will begin to take its toll. 

​She made it more than 24 hrs this time, but not 48. 
 
Bentley rested well last night and was so strong this morning.  Her eyes showed as much life as we’ve seen while in the hospital.  She was moving more than she has any day prior.  However, it just wasn’t enough.  This evening, just before we could decide who was going to leave campus and eat, dropped her O2 sats. We sat her up and tried about everything anyone knew to do.  I don’t exactly know if it was a mucus plug or what, but it was obvious she needed a lot more help again.  This makes intubation #3.  I have not asked a prediction on how long, but anticipate another couple of days.  We’ll try to loosen up her secretions more and continue efforts to recruit lung space.  #3 stinks.  I’m not excited about this one.
 
Thank you for the prayers. 

Looks like we're about to hit double digit days.

Wednesday has been like a children's roller coaster at the National Peanut Festival.  I can’t explain it, you just have to go and ride one.
 
Bentley was extubated around 10am this morning.  She went straight to BIPAP this time (this entails wearing a nasal mask sort of like your dad’s CPAP machine, but not).  She really did well for a couple of hours.  She was sitting up and tolerating everything pretty well.  Around noon she decided to scare us a bit and keep us on the edge of our seat for the rest of the day.  She does have some energy back and is wanting to fight us each time she is suctioned.  Unfortunately, her inability to clear secretions is causing some problems for her today.  As a result, she is receiving rigorous respiratory therapy treatments, among other things.  This afternoon we flipped her to her stomach to see if that will help get some of the secretions out (this is how we do chest percussions at home).  It seems to be working pretty well.  Bentley's oxygenation and respiratory efforts are improving and she has passed the re-intubation milestone we had projected for 5pm.  She is still not out of the weeds, but she has maintained almost 5 hours longer than I thought she would. 

How many more will she give us....?

Today was another good day.  Bentley pooped tonight as if she is completely full and enjoying her tube food.  She "played" with a couple of toys (pushed a button 5 times) and knocked off her ears following afternoon stories.  All good signs.  The plan is still to wean the ventilator and try CPAP tonight.  If all goes well we'll try to extubate her again on Wednesday morning.  

Thank you Thank you!  Can't thank everyone enough.  Let's see how tomorrow goes!