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March
22
2019

March 22, 2019

Hello! 
     We've continued Vest & Nebulizer treatments every 4 hours day/night since we got home from the hospital. He seems short of breath & like his lungs are irritating him still at times.
    Thankfully we have O2 on hand, so giving him oxygen as he needs it. Hopefully he can get back to himself soon here! This RSV has been exhausting/ nasty!! 

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March
19
2019

March 18, 2019

Exhaustion has set in, it's been a really long stretch for us but we made HUGE progress the last couple days and tonight we try to sleep with no oxygen. 
   I truly appreciate all the love, get well messages, visitors, gifts, food
Thank You so much
March
17
2019

March 17, 2019

We've had a good day, we are down to 6L oxygen 40%! Hes tolerated a lot of weaning today!!! Also been tolerating small amounts of gtube feedings every 4 hours. Big steps forward.
    The best medicine was his sissy climbing in bed and singing to him. Such a beautiful moment.
Continued prayers for Bentlee as we are on our last couple days stretch.
   Also include Stephen Ekre in your prayers tonight as he needs some help with his recovery
Have a good night everybody 💕
March
17
2019

March 17, 2019

Goodmorning,
 Bentlee had a good night last night. Couple coughing spells but nothing too bad.
   The Dr did rounds this morning, our plan for the day is to turn down his IV fluids from 50 to 20, and they getting back to a more normal feeding schedule.
We will also try to wean more oxygen today as yesterday he didnt tolerate any changes. Our status is no longer ICU which is a great step.
     I will try 4 different 3oz gtube feedings with Kid Boost Essentials. A little iron in the gtube and maybe get him sitting up in his wheelchair today. That will feel so good for him.
   He has gotten pretty weak being here, He will get to have PT & OT tomorrow which will be great! We are on the right path~ More visitors coming today Thanks for your support & Prayers. God is good!
     He got this penguin from Michelle Wahl, he loves it! Gave him hugs and cuddles this morning
March
16
2019

March 16, 2019

Today we are so thankful for friends and family to help get us through our day! So good for both of us to see familiar faces! 
    Bentlee is not having fevers anymore and is for the most part pretty stable, just gotta support him with a lot of oxygen right now until he is ready to be off.
Thanks for checking in, saying prayers and supporting us through these hard times

March
16
2019

March 15, 2019

We had a few visitors which is great to see! Toots, Kjellann and my mom.
 He finally got taken off of Cpap at 1pm today and has been on blended flow nasal cannula. We have been weaning just a little and trying to find a happy medium to keep him comfortable and not struggling. Today he got down to 8L 60% but had to go back up to 10L 65% and were staying there now.
   He has seemed super irritable and annoyed the whole day, kicking and pushing away staff which he has never done before. He's also had stress hives throughout the day randomly pop up and disappear. Low blood pressure all day. Somethings a little off, just trying to figure out what. I hope our night goes ok and we can rest.

March
15
2019

March 15, 2019

    We had a decent night last night. Rest helps so much! The Dr was in for rounds and we turned down his oxygen to 30% and Cpap setting to 6.
    If he continues to tolerate it and respirations stay slow we get to switch back to a blended flow nasal cannula. So looking forward to that instead of a full face mask on. Poor boy is irritated and confused.
   We are headed in the right direction! Sister and Brother will be around this weekend to visit, I know that will perk him up! 
 Thank you for the Prayers we appreciate all the support 
March
14
2019

March 14, 2019

Goodmorning,
 We are going on day 4 here at Sanford. We finally had a decent night with not too many disturbances. One episode of a fever spike but were able to get it down again. Bentlee has been on a constant Cpap face mask for 20 hours so far. It's a constant pressure to help keep his lungs open and full of oxygen. He has a really hard time understanding and staying calm with that strapped on his head for so long! I feel so helpless.
    The Dr came in and did rounds this morning. He will have to wear the CPap for another 24 hours but slowly trying to wean down the oxygen % and flow of it. Hopefully we have hit the peak of RSV and it will slowly start to get better from here.
 Bentlee is a loved little boy and we all want to see his beautiful smile and hear his contagious giggles again. He is missed at school, home, and therapy. Please continue the prayers for him as God does help! Thanks