​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!

Monday was a good day.  Bentley got plenty of rest.  She tolerated the ventilator well.  She received a full day of feeds.  She also looked really cute.  They started a new respiratory therapy exercise that appears to be helping her lungs.  She even received a visit from physical therapy.  

Overall, it was just a good day.  We anticipate more of the same Tuesday.  The plan is to let her rest for another day and attempt extubation on Wednesday.  We'll let you know how it goes.

Thank you Thank you!

​Sunday fun day in PICU.  Bentley did great throughout the night.  She tolerated her chest PT and and rested very soundly.  I was feeling rather encouraged that she might be able to tolerate the bipap.  Bentley showed more of herself today than any since her admission.  She pulled off her socks a few times and tried sitting up with her legs crossed.  We even got her out of bed so she could sit with Lindsay for a little while.  However, as the morning progressed it became evident that Bentley was working very hard to breathe. 
 
Her little body was simply exhausted.  The amount of respiratory support she was demanding reached the limits and demonstrated a need for more assistance.  Bentley was tired.  She needed to rest.  She was uncomfortable and was searching for a deep breath.  Her body needed a little more time to recuperate in order to support the effort her lungs were demanding.  Bentley was intubated around lunch, or a little after (breathing tube put back in place).  This will provide her more time to recover, build strength and stamina, and tolerate the efforts of coughing and exercising her lungs through a normal day.  It looks like a step backwards, but through this I am confident she will be able to recover her lungs to a level in which her body can keep up. 
 
She is still a stubborn determined sly little girl.  You can see it below the surface.  A little time and rest should make great strides.  She isn’t giving up, she just needs to stop and catch her breath.  Thank you to everyone lifting her and her team up. 
 
Psalms 18:32, It is God who arms me with strength and keeps my way secure.

Saturday in the PICU was a good one.  Bentley showed more promise on her CPAP trial during the night.  Shortly after Lindsay arrived the team came through on morning rounds and gave the “ok” to extubate (remove breathing tube).  Through a little understandable apprehension, we agreed and prepared to get underway.  Bentley was extubated around mid morning.  Precious thing, I think she was pretty stunned.  We got her sitting up and managed to get a few brief sounds out of her.  The mid-day was spent trying to get her up and moving, forcing her to expand her lungs and breath deeper.  Although everyone wanted us to try and get Bentley to cough, she coughs for no one.  Lindsay and I were both able to hold Bentley sitting up in a chair for a little while.  She was pitiful and just wanted to go to sleep.  The problem with sleep was that she would reduce the depth of her breaths and her O2 sat would drop.  Over the next few hours we were forced to increase her oxygen % and started to realize further intervention was needed.  A cough assist device was attempted, once, Bentley was not a fan and proved this effort would be futile.  Some aggressive chest PT was initiated, which she loves.  Her love for this exercise was found in her fist stay at Children’s a few years ago.  Eventually, it was determined we needed to try a bipap mask to help provide a forceful assistance to her breaths and recruit some bronchioles and alveoli to further expand in her left lung.  She was hooked up on bipap around 5pm and has shown promising results since.  She will remain on the bipap through the night and we will see if she can tolerate going back to a high flow nasal cannula on Sunday. 

A world of improvement since Tuesday.  
 
Bentley is very worn out, that is obvious.  Her little body is totally spent.  Tonight I am praying for rejuvenation through these wealthy breaths.  We will work on her hard Sunday to be a little more active and get some of her spunk back.  If Bentley is able to show resilience and tolerate reduced breathing assistance she should move to a lower level of care.  We’ll let you know what happens.  Thank you for the continued prayers and support.  Again, lot’s of kids and lots of families in need of them as well.  Good night.

11:35pm
​Wrapping up day 4 in PICU.  I speak for Lindsay in saying we were kind of hoping for a more eventful day, but Bentley was not having it.  I blame her completely. 
 
Beginning the day, the plan was to completely turn off sedation meds and let her wake up.  Once she was awake we were going to try some CPAP trials to see how she was breathing.  -Oh yeah, her lung is looking a lot better, they tell me.-  So we waited.   And we waited some more.  And we ate lunch.  And we watched Frozen.  And we waited some more.  B just didn’t feel like waking up enough for us.  We did get her stirring a few times, but not enough to breath without a tube.  Some of you may have seen her get fed up with the noise in a room and reach up and flip off her ears.  Well, when I turned on Frozen, she did just that.  She drunkenly reached up with her left arm, taped up with an IV, and found the tiny CI cable tangled in her hair and pulled the mic off.  I laughed out loud.  Shortly after her doctor came in, a spritely short woman, and said “put her ears on, get her awake”.  I chuckled to myself thinking, “You don’t know this girl, she’s as stubborn and determined as you are”.
 
So, all sedatives are off.  We are letting her wake up, when she wants to, and trying to get this ventilator out of this room.  They did start back her tube feedings this evening to give her a little boost of nutrition.  I have her all tucked in tonight, we read our stories and said our prayers. 
 
Thank you for the continued prayers.  The team here continues to dominate in my book.  Very appreciative of all of the love and support.  Thank you!
​

8:15pm
​​Another productive day in the ICU.  At this moment Bentley is easy to arouse.  She is resting comfortably with a small amount of sedative on board to help.  She listened to some Jewel this afternoon and some songs from me.  She is moving her arms and really trying to move out of every position her nurse puts her in.  Although, the meds are keeping her from being very successful.
 
During the course of last night, the breath sounds in her left lung became diminished.  It was determined this morning that she needed a bronchoscopy to suck out some of the secretions and give the lung an opportunity to expand and exchange oxygen.  The bronch was performed around lunch and got a lot of nasty mucus out.  Her lung is showing improvement following the bronch.  However, she may need to have another one tomorrow before the ventilator can be removed.  This will be determined following her chest xray and ABG’s in the early morning.  They are still using medications to help pull some fluid off of her body, she is still rather swollen.  Today they removed her urinary catheter and her central line (big IV).  She is left with two regular IV’s, NG tube, and ET tube (for the vent).  They also began tube feeds to provide some nutrition. 
 
Bentley is progressing.  We are very confident in the plan at hand.  Please continue to pray for the team of providers in this unit.  They have so many children to care for.  Thank you for the continued prayer and support.  Bentley has been prayed over so many times the last few days.  We cannot begin to show enough appreciation.  We know it is through His hands Bentley’s care is provided.

9:35pm

​​Overall, it has been a very positive day for Bentley.  Both chest tubes have been removed and so has the arterial line.  The last blood pressure medication was discontinued early this morning.  The ventilator is still in use and being weaned, but needed.  She is still on some sedatives to help keep her calm while she has so many things touching her.  Appearance-wise we are starting to see the results of receiving so many fluids over the last 36 hours.  She is pretty swollen and looks rather uncomfortable.  Honestly, it is what I was expecting to see yesterday when we walked in the room.  They are giving her some medications to help pull off some fluid.  Her temperature has been up and down, currently up, and a couple of virus strains were found in her cultures.  She is responding to our stimulus and we have put her ears on occasionally to talk to her.  Bentley has come a long way since yesterday and we are optimistic she will continue to improve.
 
Thank you to everyone who has spread the word about my angel.  Her progress continues to be the result of some miraculous hands being at the helm.  I apologize to anyone I have not personally texted or called. I owe so many of you a call, I know. Especially those of you are aren’t blood, but still family.  We love you and thank God for your caring concern, thoughts, and prayers. 
 
While at it, please throw up a prayer for all of the children on this unit.  I am amazed walking down the hall.  It truly breaks your heart to know not every child has the family or friend support that Bentley has behind her.