At Least We Are Home!

 birdsong

(artwork by: Kierra with some help from Mommy:)

Life does not have to be perfect to be WONDERFUL!

Right now our days go from perfect to wonderful to stressful. It’s a bit like the weather right now. From clear moon warming the cold sky to mist hanging heavy like the Garden of Eden. From sunshine and birdsong to grey ceaseless rainfall.

We came home on Sunday with a happy little girl, a tired Mommy and Daddy, and an energetic little brother. It is wonderful to be home. In fact, it was so wonderful on Sunday that after we unloaded the van, we piled everything in rooms and let it sit quietly and roominate  🙂  We indulged in hot coffee and two children and the comforts of homey blankets and couch.

On Monday, Christene came over for a few hours to help out and watch Kobe while Kierra had Occupational Therapy . The nursing agency came to get all her paperwork caught up to speed, and I made a quick trip to the pharmacy.

On Tuesday, we did laundry and cleaned up and organized and did Vision Therapy.

It’s amazing how God plants thoughts in our heart and later, beautiful flowers tendril out from those seeds of truth.

On Tuesday morning, I had an article that was due and had no idea what to write about. It was one of those ‘well is dry’ moments and I didn’t really have enough energy or will power to even come up with a subject.

Something from the hospital kept nudging the corners of my mind. It had to do with watching ones you love, suffer in pain. Didn’t our God let His Son suffer to death for US when he could have stopped it with one word?  It was for a plan beyond our wildest dreams or imaginations. The same Jesus whose heart burst wide open for us is not going to let His children’s suffering on earth mean nothing. When it doesn’t make sense, and it seems so horribly cruel and unfair, He is hurting with us. He will make everything beautiful…in His time.

That was the essence of the article I wrote on Tuesday morning. i think I needed to get it out in words so I could handle the evening better.

About twelve hours later, Kierra started wretching and gagging. She has nothing in her stomach anymore since her new Jtube, so she didn’t get much up. 15 minutes later, her color was horrible. We honestly weren’t sure if she would make it. Her stats were good, but she was gasping for breathe.   I grabbed her oxygen and slipped it on just to try to help her breath better since it seemed she couldn’t get enough air into her lungs. She jerked and screamed in pain at intervals and acted like I had never seen her act in my life.

I threw open the door to the night to give her fresh air. The moist darkness slammed me in the face and I had a crazy sensation of danger curling through the fog that lay like a smothering, eerie blanket around the house. I wanted to slam that door shut again, but common sense quickly took over and Steve stood, strong and tall with Kierra in his arms, facing the moist curling tendrils of the night.

We tried everything we could think of, even giving her a relaxant and still she struggled to breathe. Steve sat on the couch and held her while I played Jesus Loves Me over and over on the harp.Slowly she calmed down and began taking easier breaths. Her rigid jerks relaxed, muscle by muscle until she was still, and fell asleep.

I could have kissed that harp.

And my strong husband . And my sweetly sleeping daughter. And my brave Kobe who nicely went about his quiet business and acted like this happened every night.

It took Kierra hours for her color to return. We suspect she refluxed and couldn’t breath past either her reflux or a pocket of air lodged in her airways.

Since then, she has been refluxing HORRIBLY. The nurse and I put our heads together and discovered she has not been getting her reflux medication put into her belly like she should have. Instead, it’s been going into her intestinal tube, totally bypassing her belly. No wonder her belly is such a mess.

So we don’t go far from her side right now. She is so miserable, wretching and bringing up stomach acid, since there is nothing in her stomach. Yesterday, Christine ran to the pharmacy to fill a new prescription that helps with wrenching and abdominal cramps. I think it helped some, but it feels like she has lost alot of ground on her stomach refuxing issues. She is passing old blood again and even brought up a tiny bit of new blood.

Hopefully, we can get it under control here at home! She is such a brave little trupper, gagging one minute, and sweetly smiling at us the next. I think I could take some lessons from her accepting sweet spirit!

Once again…that motto i saw in the drug store

Life does not have to be perfect to be WONDERFUL!

Enjoy the wonder in today.

 

 

 

 

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2 thoughts on “At Least We Are Home!

  1. My thoughts are with you alot since discovering this blog and staying up to date with your life and all the trials your adorable little girl has to go through. May Gods sustaining grace continue to surround your hearts and lives as you surrender the life of your “lil” girl to him.

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