Posted (jooosh) in All Posts on December-12-2008

Ella’s trend over the last couple days has included some subtle hints to indicate that she’s getting fluid overloaded. As Kelly was with her throughout the day, the signs were becoming more prominent. Clinically she tends to be a bit more fussy, which can be hard to key on when it relates to fluid, but she also tends to cough more as well.

The more accurate tale of the tape can be seen in her “numbers”. We’ve observed an elevated heart rate while she’s sleeping, lower O2 saturations, and a sudden increase in weight over the last week (when the nurse came this morning, she weighed .31 kilos more). These signs tend to point to an increase in fluid retention.

Her BUN yesterday was 19…which is trending in the wrong direction from the 31 we saw a few weeks ago.

Armed with all this info, we felt Ella was going to need a dose of Bumex to push her in the right direction. After consulting with the pulmonologist, he concurred.

We gave her a dose this afternoon around 4:30, and her urine output has picked up. So glad we have this big gun diuretic to use once and awhile to help Ella get out of these valleys. Hopefully we’ll get better at catching the trend sooner so we can stop her before she slides way down the mountain.

We’ll see how she does tomorrow and if needed we’ll give her another dose of Bumex. We don’t want to push her too hard in the drying out direction, but we want to make it count too.

I have witnessed Ella do a couple new things over the last few days which really impressed me.

The first would be the grabbing of her binky on her own, followed up with a grab of her bean bag frog to cover it up! Kelly has been working with Ella on getting the binky in her mouth the right way on her own.

The second is her signing daddy! At least it seems like she’s signing daddy. It’s hard to tell for sure but when I walked over to talk to her tonight, she put her thumb to her forehead just like the daddy sign. One could argue that she’s just sticking her fingers on her head, but I’ll take it for what it is and just assume she’s signing daddy =).

Life has allowed us to catch our breath a bit, so we’re hoping to decorate the house and clean up the basement tomorrow. Here’s hoping that happens anyway…hehe.

Always great to have you following along with us on this journey. Your words of encouragement, thoughts, and prayers mean more that you know.

Thanks for loving our girl along with us!

Romans 15:5-6
May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ.

Roxie Moore on December 13th, 2008 at 4:19 am #

Josh and Tina, Thank you for the daily notes on Little Ella. While I don’t always go to the blog I do always read the first lines to get a feel for how she is doing. Key words like “slipping” do get my attention. thank you again… I do pray for you all and think of you often. The last time I was in the states I wanted so much to make a trip to Florida from Texas to visit… but besides the needs to be with my own children(6) and granddaughters (4), I had concerns about the germs I am sure that we are exposed to on the international flight and air ports. but please know that we are still praying and praising God for the blessings He has bestowed on the Bun.
Though we have never met, I feel like you guys are family.
Love to you three, Roxie

Joel Snyder on December 13th, 2008 at 1:51 pm #

Ella, What good news to hear that you are on track to getting dried out. I am really impressed with the progress that you and Kelly are making. Have a good weekend and give Mom,Dad,and Kelly a big hug from me. I will catch you later. Love,Grandpa!!!!!!

The Dirirm Family on December 13th, 2008 at 5:50 pm #

Those first “words” no matter what form are the best! Enjoy the rest of your weekend. We will be praying for the meds to do their work.

Debbie Bennett on December 13th, 2008 at 6:43 pm #

Let it flow, let it flow, let if flow… 🙂

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