Posted (Tina) in All Posts on April-23-2010

The doctors don’t have an explanation…but Ella started acting like herself last night at 7:30pm. She was in a great mood for a few hours, went to sleep. She woke up at 4am when the nurse changed her diaper. After 15-20 minutes, she cried herself back to sleep. She has been in an amazing mood all day, kicking her legs and smiling. Heck, she’s even been sitting up in the hospital crib, getting tangled in all her wires!

They gave more Bumex last night and she weighed in at 14 kilos, so she is still losing fluid. Her chest xray looked improved this morning. They continue to give Lasix every 6 hours and supplement with Bumex when she is positive on her fluids. Tonight, she is due for Lasix at 8pm and Bumex at 10:30pm, based on her ins/outs. She sits at 2 liters of oxygen and on 20 parts per million of nitric oxide via the nose cannulas. They are realizing how touchy her pulmonary status can be and don’t want to wean or make any changes until they have resolved some of her other issues and know that her Sildenafil is being absorbed via her tummy.

The only time she has gotten annoyed today is when she wants to drink water. You can hardly blame her – she’s so thristy from being so dried out with the diuretics.

There are so many things to make forward progress with on this child, so it is a matter of choosing one area to focus on, going slow and getting some victories. For today, they decided to try food. This time they wanted to go even slower, 5ml per hour of Nutren Jr with Fiber. Ella still had a challenge with it initially today because she gets too much air trapped in her belly when using a continous drip of food and she is still not passing gas like she does normally. So when that air gets trapped, it causes her gas pains. Instead, we talked them into letting us drip it over 30 minutes on the pump then venting for 30 minutes. Each time we vent, we usually get gas out. It has worked fine throughout today and she has been tolerating the food fine. She has been watching her videos and having a great day. We’ll see what happens over the next 24 hours. There is still concern that it could be a cumulative effect and that by the time more food gets in her, she may have slow motility or slow gastric emptying. Either way, time will tell.

Tomorrow, there is discussion of weaning her off of the withdrawal meds: Methadone and Ativan. They want to go very slowly over about a 2-3 week timeframe. They will continue to give one or the other every 3 hours, but slowly wean the dose of med.

They discontinued Benadryl yesterday and we have not given any Atarax today. She has not shown one sign of being itchy. Wow.
We have not given any Morphine because she has not shown any signs of being agitated. Wow.
She is happy and smiling. You would never even know that she was checked out the past two weeks. Wow.

We realize that there still may be bumps in the road in the coming days, but this was a true testament to prayer. Again, the doctors have no explanation for the sudden turn. We thank all of you for the prayer support and are so thankful to see our daughter smiling and feeling good today. Whether the days ahead are darker, it was a clear indication to us that He is in the midst of the chaos.

1 John 5:14-15 (NIV)
This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

Tara Hayes on April 23rd, 2010 at 9:05 pm #

Praise God from whom all of our blessings come!!! I am so stinkin excited to read this post!!! Sweet dreams.

Julie on April 23rd, 2010 at 9:07 pm #

So relieved! Praise God! Hope you get some sleep tonight, too.

Laura Blackwell on April 23rd, 2010 at 9:44 pm #

Smile. God is good.

Nancy Costas on April 23rd, 2010 at 10:10 pm #

It is so good to see Ella smiling and doing so much better. We will continue in prayer for Ella to keep on improving. Love you all you guys.

Lyle, Nancy & Amaya

Gloria Jacobsen on April 23rd, 2010 at 11:47 pm #

Ella is God’s little miracle girl.We just praise Him and thank Him and continue to ask Him for her total healing. Also for strengh and guidence for the two of you. God bless all three of you.I am so sorry I was out of town with my sister from Boston,when you were visting Temecula. Take care and rest when you can. Gloria & Red

Jim and Char Snyder-Jordan on April 24th, 2010 at 4:46 am #

The miracle continues. Ella continues to teach others to have faith and believe in God. We are so very grateful for your effort in being faith based parents. You are awsome. Go Ella, Go…

Ellie Brown on April 24th, 2010 at 5:31 am #

Welcome back Ella

Alicia Martin on April 24th, 2010 at 6:14 am #

Wonderful news!

Eve Johnson on April 24th, 2010 at 6:40 am #

Hooray for today!

julie kirk on April 24th, 2010 at 6:48 am #

Little Miracle girl. God has big plans for her 🙂

Karissa Benoit on April 24th, 2010 at 8:40 am #

So glad she is doing better! It’s great to see her beautiful smiling face again. By the way—you are missing really awful weather over here. It’s like winter all over again!

The Williams on April 24th, 2010 at 8:42 am #

Praise God as we know the reason for her happy place… God get’s all the honor… we love you all!

Joel snyder on April 24th, 2010 at 9:23 am #

Ella, What great news that you are feeling better and I am praying that this is just the start of better days ahead. Tina and Josh I am so proud of you and your unbending faith and courage when the things are tough. I hope you have a great weekend. Love,Grandpa!!!!!!

Tammy on April 24th, 2010 at 12:44 pm #

It’s been a couple of days since I’ve been able to read the news…..Ella looks so much happier. What a blessing. Sweet baby girl….I will pray that everything keeps moving in the right direction.


Krista Chiefa on April 24th, 2010 at 2:29 pm #

So happy to see Ella’s smile – you can tell she is feeling better. Praying for continued progress and feeling good days. Miss you, Bun.

monika clark on April 24th, 2010 at 2:31 pm #

THANK GOD for Lamentations 3:22–ella’s lamentations have been answered along with all our prayers,and ever continuing. GOD BLESS AND KEEP YOU EACH AND ALL, love and hugs, monika

Steve and Joan Odell on April 24th, 2010 at 2:48 pm #

Thank you GOd….prayers continue and hugs, Steve and Joan

Rainey Family on April 24th, 2010 at 8:05 pm #

We are so happy to hear that Ella is feeling more like herself. I hope this is continuing today too!

Laura Marold on April 24th, 2010 at 9:31 pm #

I’m so glad she’s feeling better! Love, Laura M.

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