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. 

​Well, what a time for an update… I appreciate the requests I get for another one, and to know how B is progressing, growing, and doing.  Thank you.  Today I simply ask for your prayers.  Bentley is in the hospital in what I guess you can call Serious Condition, not quite as critical as yesterday.  Yesterday morning, I found B lying in bed unresponsive.  She appeared to have gotten sick in her sleep and aspirated.  She was warm, breathing, and had a pulse.  We did call 911 and brought her to the hospital.  After a tumultuous day, the Lord’s hand on these healthcare providers has her moving in the right direction.  Bentley is suspected to have been in Septic Shock.  She has been intubated and physiologically supported through a recipe of blood pressure medications, sedatives, ventilator, and fluids.  At this point things are looking up.  A number of the meds have been weaned off.  The paralytics and sedatives have been turned off or greatly reduced.  As of this morning the rate on her ventilator is being weaned as well.  Last night, a couple hours after turning off the paralytics, she woke up and is showing evidence of intact brain functions.  She is still on some sedatives to help keep her calm, but we are very pleased with what we have seen to this point.  I send this out to capture that small batch of prayer warriors not reached yesterday.  Please throw up prayers for my sweet angel.  She is one tough little girl.  She is in great hands.  I know the Lord has carried this team and guided their decisions in treatment.  We are not out of the weeds yet but I pray today is a day of continued progress and healing.  Thank you all!!  She wouldn’t be to this point without all of the prayers lifted yesterday. Thank you again!


Justin  


PS, As you may be aware, we Bryants travel as an army when someone is in need, so we are good in that respect.  All we ask for is prayer.