Ella had a great day.
She was up for Nurse Marla at shift change this morning and was in a joyful mood. Nurse Marla could not stop commenting all day on how much fun she had playing with Ella.
When they came to give her a chest x-ray this morning, they wanted her in an upright position. While Nurse Marla held her up, Ella even smiled at the xray technician!
So clinically, her behavior was amazing. Plus, her heart rate remained lower (170 was the highest today, even when she was awake) and her saturations stayed in the mid-to-high 90s. Her oxygen remained anywhere from 700ml to 500ml, throughout the day as she tolerated it.
She is definitely still fighting a cold which is evident by her nose getting stuffed and her coughing. She still sounds sick, and yet through it all, she was still managing to play and have a good time.
It was so promising to see Ella exhibiting this behavior, even as we are getting further and further away from her last dose of IV lasix.
Again, it was not great to hear that she has moderate to severe pulmonary hypertension, but at the same time, this is an answer to prayer. We joined all of you in asking the Lord to reveal knowledge and give discernment. This was a huge piece of the puzzle and the heart medicine is already working its wonders.
The increase dosage of Bumex at times when her belly is less full also seems to be keeping Ella nice and dry. Her chest xray came back and it is the best chest xray they have seen thus far for Ella! I took a look and her left lung (although still significantly smaller than her right) is the most expanded that I have seen it. This is a major answer to prayer, in that it looks like the breast milk is not causing any fluid build up in her chest cavity. Because the xray looked so great, they decided to increase the breast milk to 50% of her total feeds, starting tonight with her 6pm feed.
She has lab work in the morning where they will check all her electrolytes and make sure all her levels are intact.
Today held a glimmer of hope that going home might be within reach. All of it will depend on how Ella trends over the next several days.
Please continue to pray that she will get rid of her cold, the increase in breast milk will be tolerated, her lab work will turn out well, the strategy with diuretics and heart medicine will continue to make her strong, so that they can continue to wean her oxygen.
Also, a special prayer request for Par’s mom, Liz. She was hospitalized yesterday due to a kidney infection. Right now, they are not sure if that is her diagnosis or not, but you can keep track by visiting their blog.
I wanted to share the lyrics to a song that ministered to my heart today. The words resonated and I couldn’t help but feel the weight of the words. It is so good to absorb and take in the truth of God’s love.
I have to believe
by Rita Springer
I have to believe that He sees my darkness
I have to believe that He knows my pain
I have to lift up my hands to worship
Worship His name
I have to declare that He is my refuge
I have to deny that I am alone
I have to lift up my eyes to the mountains
It’s where my help comes from
He said that He’s forever faithful
He said that He’s forever true
He said that He can move mountains
And if He can move mountains
He can move my mountain
He can move Your mountain too
I have to stand tall when the wind blows me over
I have to stand strong when I’m weak and afraid
I have to grab hold, hold of the garments
Garments of praise
I have to sing praise when the hour is midnight
He unlocks the chains that bind up my soul
My sin and my shame, He has forgiven, and made me whole
I have to believe
