Aug
31
    
Posted (Josh) in All Posts on August-31-2008


Ella continues to feel better…you can just tell by her clinical behavior.

She’s still fighting a lot of secretions. There are two major components: inflammation in her lungs and the hiatal hernia. The bronchoscopy will give further insight by providing a closer look into her bronchial tubes and her airway. This should tell whether or not there is aspiration occurring which could be a major contributor to the inflammation. Also, the hiatal hernia is likely the cause of the retching and is adding to the inflammation too, since her nissen is in her chest and resting into the side of her esophagus.

The Prednisolone (steroid) was helping with the inflammation and secretions over the last few days, but since we reduced her dosing to every other day, the secretions have increased again. We’re pretty sure it’s not a virus or cold at this point because she’s not running a fever. Once we have the bronchoscopy and surgery is complete on Wednesday, we should have a better picture and can hopefully treat the secretions more effectively.

The prospective renter that Tina was going to meet today bailed out on us. We’ve not had a lot of traffic over the last 6 weeks, and summer is coming to an end. Now is the best opportunity to rent a house, and with every day drawing closer to fall, our chances are getting slimmer. We’ll see how things pan out in the coming weeks, but for now we’re going to be patient.

Tina and I are holding up ok albeit lacking in sleep. With Ella’s congestion, she doesn’t sleep as well, plus the nurses come in to check on her through the night (administer lasix, check vitals, etc). This activity tends to disrupt our sleep, and Tina has been taking the brunt of it so I could be alive to work during the day.

On top of physical exhaustion is the emotional side of things. Being here in the hospital with Ella, and all the elements that go along with it, has been very draining. We’d love to be back home, making forward progress with our girl, but this is where we’re supposed to be.

But…

Just like we experienced in Gainesville, we see glimpses of our Lord throughout the day. Whether it be someone we meet in person that is touched by Ella’s story, an email filled with love and support, or a comment left on the blog that lifts us up in prayer. Our strength is found in these, and in knowing that our Father is in total control.

The journey has not been easy, but we know God is always right here with us.

Please pray that Tina and I can catch up on rest, and that our bodies will resist any potential colds that would love to attack us while we’re in this compromised state. And especially pray for Ella, that her congestion and secretions will be minimal and that she will gain strength and stability for surgery.

We praise our Lord every day for the amazing testimony of our little girl. She is such a blessing!

Isaiah 40:28-31 (NIV)
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

He gives strength to the weary
and increases the power of the weak.

Even youths grow tired and weary,
and young men stumble and fall;

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.



Laura Sizelove on August 31st, 2008 at 9:28 pm #

Praying for all 3 of you! Hang in there.

Anne on August 31st, 2008 at 9:43 pm #

We KNOW you guys are up for this… you’ve already come through so much more! Always remember you have a huge following thinking of you and praying for you…

Vicki/CO on August 31st, 2008 at 9:43 pm #

Praying for strength, courage, comfort, and protection for all three of you as you await the surgery and get through these “waiting” days! Oh, the waiting is so hard isn’t it? But our God knows exactly what’s happening, and He will guide everyone as you wait and get ready. Even though I don’t know you personally, I just have such a love for you all in my heart. God bless you, precious ones, and may you all find times of good, deep rest.

LoriAnn & The Boys on September 1st, 2008 at 5:53 am #

May the Lord increase your power and strength. You both are so strong, which is apparant in your blogs and the smile on Ella’s face. I don’t think I’ve ever seen a happier child that has to go through all this stuff.
May the Lord look after y’all today and give you all super natural strength and energy! Who needs sleep, when you have the Holy Spirit holding you up?
It is the Lord’s will to make examples of your little family and you are doing it so well in your daily testimony.
In His Name, LoriAnn

LoriAnn & The Boys on September 1st, 2008 at 6:00 am #

I just noticed its: 1, 1, 1, 1 today! How fun! LuLu

Mollie Rosing on September 1st, 2008 at 7:31 am #

Praying for rest and energy for you both and of course, that Ella Bun continues to feel better. Continued love and prayers, the Rosings

Katy Nilsson on September 1st, 2008 at 9:45 am #

It’s amazing how far a smile from the little Bun can take you. I am so happy she is feeling a little better so she can smile and help you guys through this tough time. Know that you are in our thoughts and prayers.
Love
Katy

Joel Snyder on September 1st, 2008 at 1:28 pm #

Ella, Sorry I didn’t post this message sooner but I am so happy to see you smiling. Josh and Tina try to get your rest and have a great holiday. I will contact you later. If you need anything call. Love,Grandpa!!!!!!!!!!!!!

Roxie (Adrienne's friend) on September 1st, 2008 at 11:38 pm #

Josh and Tina, I am praying for God’s warm and loving hand on you and your Baby Bun, to keep you and remind you that you are not alone. Everyday as I check my emails my heart goes to prayer for your family but I have to say thank you for the pics…everyday… seeing Ella lifts my heart and delights my soul. She is soo precious..playing with her feet, smiling and sleeping like the angel that she is. I wish you were able to be at home and not be in the struggle for Ella’s life that you are in… but since you are I want you to know how your family blesses more people that you will ever know in ways you cannot know. The people around the world pray for you and will hold your arms up like Aaron and Hur who held Moses arms as he prayed for the Isrealites and the battle they were engaged in. It is found in Exodus somewhere…? We want to hold your arms up and pray for your family as you do battle for Ella’s health and very life. We know you are tired and so we pray that you may rest in His arms until you gain strength again to stand.
Your Sister in Christ,
Roxie

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