Posted (jooosh) in All Posts on January-9-2008

Our girl had a very rough day. One small positive, she isn’t running a fever, so maybe the virus is gone. However, it looks like the switch to PO (oral) diuretics, specifically the Lasix, is not doing the trick. Her breathing is labored, her saturations are not her typical baseline, and overall she seems to be working a lot harder.

We thought this might be the case last night when we saw the swelling in her face and her lack of urine output for the day. We were hoping this wouldn’t happen, but Ella’s behavior today confirmed it. She has been very fussy and not consolable most of the time, an indication of respiratory distress. Even one of her favorite nurses (Ms. Marla) had a pretty rough time with her too throughout the day.

After talking it over with Dr. Kays, the nurse practitioner gave her a IV dose of Lasix at 10am (they did this because they know it works and would provide some relief). Sure enough, Ella had a “huge diaper” shortly after this dose.

We think they’ve finally recognized that Lasix administered orally is not working for Ella, so they’re going to try a new diuretic. Instead, they’ll be giving Ella .25mg of Bumex twice a day. We were told that this diuretic is up to ten times stronger than Lasix, and we’re hoping it does the trick for our girl, even when administered orally (via her G-Tube).

Ella’s CVL (central line) is going to be removed in the next couple days by Dr. Kays. This is not totally trivial and under the circumstances carries a higher risk than normal. Remember that her IVC is partially occluded, possibly by a blood clot, and removing the CVL could cause the clot to break free. If this happens, it could prove fatal. The doctors will be administering anti-coagulants to help reduce the clotting, but this is still risky.

The CVL is how Ella gets any IV medications, so we’d like her to be stable with her new oral regiment before it’s removed, but this is not likely. Worst case, they’ll get a peripheral IV if it’s determined that access is still needed.

Late this afternoon, Nurse Marla had to leave the hospital unexpectedly so we headed down to be with our girl a bit earlier today. She looked better than last night (not quite as puffy), but she seemed uncomfortable. I spent a good amount of time rocking and singing to her. She was calm for awhile, but became more agitated as the evening wore on. When we left tonight she was having a hard time going to sleep. Just called to check in though, and Ella has been sleeping since we left (about 3 hours). Hopefully she’ll do a lot more of this tonight.

We can use your prayer support in the following areas:

  • That Ella’s respiratory distress will be minimized and for her to be more comfortable
  • That our baby girl will respond to the new diuretic (Bumex) that’s being delivered through her G-Tube
  • For safe removal of Ella’s central venous line (CVL)
  • Wisdom and discernment for Dr. Kays and the medical team so they can come up with the best plan for The Bun

Father God, we lift up our baby girl to you. Please send your healing touch, and relieve her of this discomfort. We ask that her body respond well to the new diuretics, and for her lungs to grow stronger. Jesus, keep her safe during the removal of her central line. We pray that no complications would occur, and that she comes through it without incident. Lord, we know that you understand what it will take to heal Ella. We pray that your wisdom be imparted to all who are involved with Ella’s care.

We thank you for the blessing of Ella Renae. May you continue to do your work through her. In Jesus name, Amen.

Kristen on January 9th, 2008 at 10:52 pm #

What great love you two have for Ella. We stand with you in prayer!

Julie Kirk -Saudi Arabia on January 9th, 2008 at 10:55 pm #

We are praying and lifting Ella up to the one who loves her the very most. To
Bless and keep you strong as well.
love to Ella

laura blackwell on January 9th, 2008 at 11:08 pm #


Laura Arneson (Adrienne' friend) on January 10th, 2008 at 3:46 am #

Father God, we seek your wisdom, comfort and healing. Be with this precious family, bear this burden for them, give them peace. Sprirt blow your breath through Ella’s delicate lungs, take the fluid away. In the name of Jesus place a hedge of protection around this child and her parents bind the evil one away them. All this we ask in the name of Jesus.

Joel Snyder on January 10th, 2008 at 3:56 am #

Ella, I am hoping and praying that your new medicine and the removal of the CVL go as planned and you can keep making baby steps toward going home. I will also be praying for your Doctors and caretakers in their search for the answers to heal you. Josh and Tina keep up the good work. I will be going to Lone Tree today so if you need anything please call me. Love,Grandpa!!!!!!!!!!!!!

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on January 10th, 2008 at 7:20 am #

I, too stand with you in prayer;may you all know the touch of God’s hands in healing for Baby Ella and strength for her parents.

Williamsburg on January 10th, 2008 at 8:19 am #

All three of you are constantly in our hearts, on our minds and being lifted to the Father with all of these concerns. Love and blessings. XOXOXO

Andrea Thibault on January 10th, 2008 at 8:54 am #

I am saying lots of prayers for little Ella this morning and keeping her close to my heart. I am also praying for the strenght of her mom & dad.

Melissa on January 10th, 2008 at 9:24 am #

Oh Father God – We come before you now and we praise your name. Praise you Lord for where you have brought the West family. They have been through so much and come so far. We thank you for your protection over Ella.
Yet, once again they find themselves at the bottom of a mountain it seems, maybe in the valley. Lord, we know that you can see the mountain top and we pray that you would give Josh and Tina a glimpse of that. Thank you for the breath of fresh air that you gave them with the results of their meeting with the medical staff. What a blessing to hear such great and awesome news!!
Lord, as they start to switch Ella’s medication I pray that her sweet little body would be able to tolerate it and feel some relief from it.
Guide Dr. Kay’s as he goes to remove Ella’s CVL. May it be done without complications and may Ella’s body be strengthened so that they find she doesn’t need the CVL.
Lord, I pray that everyone involved in Ella’s care would be able to feel your gentle spirit and guidance.
We thank you that you are there with Ella each and every moment. Give her peace. Lord, help her body to be able to rest and climb to the top of this next mountain.
Give Josh and Tina strength that only comes from you. Lord, when they feel weary give them peace. Just give them what they need to finish this race and finish strong.
We know that this is all in your hands. May your will continue to be done as it has in the last 170 days.
We praise God from whom all blessings flow.
Thank you Lord, for letting each and everyone one of us be a part of this journey with the West family.
Bless this family and keep them strong and safe.
In your precious name we pray. AMEN!!
Josh and Tina- I have been following your posts. I continue to lift you all up. Continue to stand on the solid ground and rock that we find in our most loving and awesome father. May He give you peace, strength and wisdom when you need it the most! Hang in there… her homecoming is just around the corner.
You guys are amazing. I can’t even imagine what you’ve been through and yet through it all you have been so unbelievably faithful. Bless your sweet family.
We love you.


Laura Sizelove on January 10th, 2008 at 9:39 am #

We’re praying for little Ella’s body to fight this virus and respond well to the oral meds. May God continue to strengthen you all.
Jon, Laura, Mark & Rachel

Joan and Steve Odell on January 10th, 2008 at 10:57 am #

Precious Ella, We are praying for our Lord to touch you and give you relief and take away the issues you are facing. prayers for Momma and Daddy as well. Hold tight and look to the Lord. Hugs and Lord Bless – Steve and Joan

Chambers Family on January 10th, 2008 at 11:49 am #

Daddy and his girl. How beautiful.

Lisa Correia on January 10th, 2008 at 5:20 pm #

Oh guys,
Hang in there! It has been such a long road so far and I sense you getting weary! We will be praying for you as always and especially for strength and peace for mommy and daddy! The picture of Josh and Ella is beautiful!!!
We love you guys!!
The Correia’s

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