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Here we go here we go here we go again

7/24/2016

46 Comments

 
PictureWatching a movie with my girl
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. 

46 Comments
Teresa Denney
7/24/2016 03:29:11 pm

Continued prayers for Bentley and you and Lindsay too. Saying praises for that great family support.

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Lee cleveland
7/24/2016 03:34:24 pm

I have been thinking about you all-actually had a snack bag to bring but Konie put the kabosh on and I gained a few more pounds😩
I am available and SO happy to plug in where you might need something until Friday-even a different snack bag!!
Lee cleveland

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Dana Whitlock Stockli
7/24/2016 03:51:13 pm

You and your sweet family are in our prayers tonight. If there is ANYTHING we can EVER do for you, please let me know! I'm a pretty good grandma and would love to keep Ally anytime :)

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Jess
7/24/2016 03:53:25 pm

Love y'all soooooo much!!! 😘😘😘

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Denise
7/24/2016 04:21:28 pm

Beautiful girl and beautiful family!

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Karen Isaminger
7/24/2016 04:33:54 pm

Continuous prayers for you all

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Kathy Oliver
7/24/2016 04:40:51 pm

Praying for sweet Bentley and your family!

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Kay Kolb
7/24/2016 04:48:32 pm

I think of, and pray for, your family so often. Today is no different.

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Cookie logan
7/24/2016 05:17:31 pm

We are all praying for Bentley

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Kim Spencer
7/24/2016 05:46:09 pm

So very sorry to hear this news. Much love to all. Prayers continue!

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Beverly Kilpatrick
7/24/2016 05:46:24 pm

Praying that Bentley recovers quickly and you are all home soon. Thank you so much for the update!

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Laura Stacy
7/24/2016 06:00:35 pm

Praying for Bentley.

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Jennifer Wolf
7/24/2016 06:28:02 pm

Praying for sweet Bentley! Love to you all.

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Amanda Givens
7/24/2016 06:51:29 pm

Praying for sweet Bentley and family. May God comfort you all as she continues to improve.

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Wiky
7/24/2016 06:57:50 pm

Praying for B and you all.

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Brenda Kasch
7/24/2016 07:38:32 pm

Praying for Bentley. She is truly blessed to have wonderful parents!

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Patti Slade
7/24/2016 07:55:18 pm

Thanks for the update. Prayers for sweet Bentley as well as for you all. So blessed to have family!! Love to all!

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Susan Hardekopf
7/24/2016 08:29:37 pm

Praying for your precious Bentley and for each of you as you juggle life!

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Ben McClurkin
7/24/2016 09:30:05 pm

Andi and I will be praying for that sweet girl.

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judy meadows
7/24/2016 09:44:41 pm

Lifting all of you up to our Lord for comfort, strength and total healing. Envision sweet Bentley resting in the arms of Jesus and hopefully this will bring comfort to you. Isaiah 40:11. We love you all.

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Jennifer johnston
7/25/2016 12:08:04 am

We love you and are praying for good results and healing

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Sandra Roland
7/25/2016 03:50:40 am

You have an amazing family, full of love. Prayers for B to be healed and home soon.

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Sue Doleys
7/25/2016 04:48:03 am

Prayers for you & your family.

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Rene Birke
7/25/2016 05:06:37 am

Thoughts and prayers continued for the entire family! All of you are amazing! Hope Bentley gets some relief soon and can go home!

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Gayle parsons
7/25/2016 05:09:12 am

Continuous prayers to our Great Physician for B🙏🏼

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Kathy Gannon
7/25/2016 05:10:29 am

Such love surrounds Bentley! Tim and I are praying daily for speedy recovery! She is one tough little girl! Thanks for posting so we know specifically how to pray!

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"Miss" Katie
7/25/2016 05:17:01 am

Praying for my girl!!!

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SANDRA TURNER
7/25/2016 07:27:07 am

PRAYING FOR SWEET BENTLEY AND ALL OF YOU. YALL ARE ONE AMAZING FAMILY

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Cathy Benton
7/25/2016 09:30:54 am

May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13 Skip and I are praying.

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Michelle Bomar
7/25/2016 11:40:50 am

Praying for a quick recovery for your sweet baby and peace and strength for Dad and Mom, in Jesus' name!

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Kathy Thomason
7/25/2016 11:46:38 am

Justin and Lindsay,
Our heartfelt prayers are with your precious Bentley each and every day and for you all! We love you and your beautiful family!

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rosie sciacca
7/25/2016 01:39:26 pm

Love and prayers are being sent to sweet Bentley and to both of you strong, amazing parents. We are lifting up ALL staff and family in the restoration of Bentley's health. God bless you all.

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Angela Ballard
7/25/2016 02:25:44 pm

Praying that Bentley will get better soon. She is one tough little angel. Prayers for your entire family.

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Wes Savage
7/25/2016 03:35:45 pm

Praying for you daily, Bentley, Justin, and Lindsay!

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Haley
7/25/2016 03:48:45 pm

Sending love and prayers. You guys are such great parents with such cute little girls.

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Don and Kathy Grren
7/25/2016 07:20:43 pm

We are praying she will be well soon.

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Jennifer Jones
7/25/2016 07:32:28 pm

My prayers are for Bentley and all your family. Doctors and nurses, too!

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Hunter & Alex Gaskins
7/25/2016 07:43:24 pm

Prayers from San Diego for B, your family, and sweet girl's healthcare team. We love y'all and will keep thinking positive, encouraging, faithful thoughts!

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Lissa Hines
7/25/2016 07:50:28 pm

Prayers for B and your entire family!

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Steve and Kris Milliron
7/25/2016 09:11:12 pm

Prayers to all of you for healing and comfort!!

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Natalie Frenxh
7/26/2016 04:57:06 am

Praying for sweet Bentley and your family!!!

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Cathy (Eades) Daniel
7/26/2016 07:53:40 am

Prayers for sweet Bentley and all of you.

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Terri Gray
7/26/2016 01:40:23 pm

Praying she will get well soon.

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Shay Bryant
7/27/2016 10:07:37 am

Love our family.Everyone's handprints are all over these girls. The best thing is they are all in God's hands!

Praying for all. Aunt Shay and Uncle Stan

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Edawg Jones
7/31/2016 01:53:39 pm

Come on BGirl. Show us your spunk! You are a part of a dear, loving family and we all want you better soon.

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Betty kirby( mary & Stanley friend)
11/5/2016 05:34:28 am

What a big fighter, & Blessed to have u'all for a family! yes I will continue to pray for u all.!love betty

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    I will be writing most of these.  Justin, that is, the dad.  Lindsay will provide her input.  

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