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snakes and airplanes

4/26/2013

11 Comments

 
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Big smiles during a break from her oxygen.
1 oxygen compressor/condensor thingy
6 oxygen tanks
1 O2 saturation monitor
1 nebulizer machine do-dad
1 feeding pump
1 iv pole
A wagon full of accessories and attachments.

This is the goody bag we are leaving the hospital with! I know, right?!  It's ok, you can be jealous.  All you probably get when you leave is a receipt for your ER copay.  If you stay in the hospital for 9 days, you get fun stuff like this.

We go home today.  We haven't left yet, but the docs came by and confirmed we get to leave.  So, what has happened since...

The doctor team really took on a new approach from saturday to sunday.  They realized this is a bigger situation than we all origianlly thought.  Due to Bentley's muscle weakness and lack of a strong desire to eat everything we need to give her, her ability to recover from this lung thing was impacted.  We have started, and will continue, rigorous respiratory therapy stuff.  Mainly in the form of nebulizer treatments, and chest PT.  The congestion and inflamation from her bronchiolitis inhibits gas exchange in her lungs.  This is why we are going home on oxygen and continuing those therapies for now.  The oxygen should be a relatively temporary thing.  But as all our docs have reaffirmed, this could take weeks or months to recover from, even for a baby without some of her possible probs.  

Nutrition-wise, we need to monitor B's caloric intake.  We have gone from the 50th percentile down to less than 3rd percentile.  Remember those bell curves you studied back in school, yeah, she's down on the lower left corner where it's really small.  We need to get her back up.  So B has a Nasogastric tube in place.  This is a small tube the size of a spaghetti noodle going through her nose into her stomach.  We will supplement anything she doesn't consume by mouth through the tube.  Ex: We have a target of 5oz per bottle, if she takes 3oz from her bottle and stops, we give the remaining 2oz through tube.  Plus overnight continuous feedings to help build her back up.  Idealy this will be a temporary thing too.  To help her get back to where she needs to be.  Although, our team of docs seem to think it may be more long term.  We have already discussed the plan for a gastric tube, if it becomes a necessity.  

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Atrovent breathing dragon facemask
The learning curve on all of this is sort of steep for a couple members of our family (Lindsay, haha).  But she's smart, she'll figure it out.  I'm not a patient teacher though, so pray that I will understand the disconnect there.  Right now we are working on converting units of measure, i.e. 1oz = 30ml.  Yes, we are starting slow, but I guess if you don't use it you lose it? even for the very basics.  hahaha, I love my wife.

I have to give a big shout out to our doctors, nurses, and respiratory therapists here at Children's.  They have been great.  We've had awesome care.  Multiple nurses deserve the Daisy Award.  I love having a team of residents coming in.  One of them stops by many times per day.  And you have a chance to teach them something.Our attending doc has been fantastic and the residents and interns have probably learned as much about deaf and blind babies as we have about babies on oxygen and tube feeds.  Lindsay has done a good job of letting them know things work deferently with B, focusing on her need for consistency and routine.  The RT's here have really impressed me as well.  

Well, our lives keep changing.  A week and a half ago I had a very different outlook for the months of April, May, and June.  Today I know flexibility is an understatement.  Adjustment is daily.  Sanity is relative.  Our reality is ours.  We must rely on each other and our friends and family more than ever.  Thank you, in advance, for what we may ask for.  

Snakes and airplanes, that's what scares me.  Having the privilege to be my child's nurse, shoot, that's just fun!

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8 days in her Duke socks. then spit up on them.
11 Comments
Terry Shea
4/26/2013 10:08:53 am

Glad you got to go home today! Hey my favorite pic is the one of you holding B in her hospital bed. :)
Xoxo

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Rene' Burke
4/26/2013 02:06:23 pm

So glad you are getting to take Bentley home! All of you are in my daily prayers. The poem was beautiful and I know God will lead you in the right direction on "B's" care.

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Jan Fry
4/26/2013 09:43:05 pm

So glad you are home! Sending lots of love/prayers for sweet angel baby. Tell your mom to let me know if I can do anything at all. xxx ooo

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Cathy Benton
4/26/2013 09:58:02 pm

Praying for all of you!

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Lindsey Moore
4/27/2013 12:54:06 am

So glad giraffe has been able to travel with Bentley! Sweet sweet smile on her face is contagious! Love you guys :)

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Connie Scollin
4/27/2013 09:59:18 am

Jusin and Lindsey, Wanted you to know that I am praying for your precious baby. Justin, I went to school with your Mom and see her from time to time. Actually not so much since she moved to Dothan. I have worked at childrens for almost 35 years. i worked downtown for 21 years in recovery and have been at Childrens South since we opened. I work very closely with all of our anesthesiologist. Please let me know if I can do anything and if you have any questions, please ask. My best friend is Suzanne Blocker, director of speach and hearing at childrens. Dr. Woolley is also a very good friend. I also knoe Betty Bell and she is an angel. Please know I am praying. Your mom has my cell number.

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Jennifer johnston
4/27/2013 01:11:20 pm

Love the updates and pics. Praying for all of you. Love lifted me (and you:) when nothing else could help, love lifted me. Old hymn but great message.

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Farrie Murphy
4/27/2013 03:20:09 pm

Justin, I go to church with Ken and Konie and we have been praying for all of you. Thank you for keeping us updated. We go to this site frequently so that we know how to pray. As a registered nurse, I know some of the challenges of taking B. home but you will be a master at all of this soon.

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Janet Turman
4/28/2013 01:12:39 am

I have just learned of your website and it is amazing-been wanting news of Bentley's progress and now I can follow you all on your incredible journey...thank you for the pictures, the news, your incredible support system-you are so blessed and your attitude as you navigate your way through healthcare and questions and answers and tests and more tests...you are all amazing. I know God is working through you. I am praying for Bentley-for you all. He will wrap you up and guide you on a path that will give Bentley what she needs to thrive-with a mom and dad like Justin and Lindsey, B is indeed blessed. Thank you for letting me be a part of your life. We love you and yours. with love, Janet

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Rachael B
4/28/2013 05:44:49 am

Going home!!! Wonderful news. Praying for sweet Bentley. You guys are amazing.

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Pam Smith (Daniel's mom)
4/28/2013 06:00:56 pm

Somehow I was lead to your blog.
Little Ms.B is absolutely adorable! Thank you for taking time to share your story with us so that we may pray for your family and learn from you.

Reply



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