Posted (Tina) in All Posts on August-29-2008

We did not go to bed until 2am and managed to get a few hours of solid sleep. Ella was up a few times when the nurse would arrive for vital signs and/or to administer the IV Lasix. So it wasn’t the best sleep, but we’re hoping for much more tonight.

We were looking for 3 things to see if she was getting more dry: clinical signs, her urine output and weight.

Clinically speaking, Ella seemed like she might be getting more dry. She seemed a little less congested and a bit more comfortable. The nurse this morning was fantastic – – she went and found the right person to stick Ella; it happened on the first try. Her labs came back with a BUN of 22 (they were 18 yesterday). Finally, she lost a good amount of weight which is the first time since admission. She went from 7.67 kilos down to 7.43 kilos.

Consistent with her history, this means that the IV Lasix is an effective tool to get the fluid off Ella. We’re glad that we pushed for it yesterday, even though we received an indifferent disposition from the doctor. This time, they delivered 2 mg per kilogram per day of IV Lasix and that seemed to have the effect we want. We think that she might need another 24 hour period of the IV Lasix before she is at the optimal point for her before surgery.

We hope the IV can remain viable. That is always a challenge for Ella. This evening, we may have lost it. Fortunately, it seemed like the positioning of the catheter. We’re hoping that there will not be a problem when we go to administer the 2am dose of IV Lasix. Also, we hope to see her BUN higher from her labs in the morning along with a bit more weight loss. The dryness in her lungs will help the secretions to simmer down, lessening her overall congestion and allow for ease of breathing and lower heart rate.

Today is the first day that Ella is not getting prednisolone. She was on a 5 day course of the steroids and now, is getting the dosage every other day until surgery. Hopefully, that dosage schedule is enough to maintain her until surgery.

My heart leaped this afternoon when I heard my email notifier on my MacBook. I looked down and noted that Dr. Partrick replied to my email that I sent earlier in the week:

Hello Mrs. West, Just wanted to let you know I did talk with Dr. Kays in Florida today. As you know, he remembers Ella well. We reviewed in detail Ella’s studies and her operative history out there. I now have a better understanding of her anatomy after the CDH repair, and can plan accordingly for the OR here next week. I will also plan on sending Dr. Kays a copy of my operative note from here. I will try and touch bases with you this coming Monday (when I am on call) or Tuesday before the surgery Wednesday. Have a good weekend!!

Although we know that the Lord will be watching over the entire procedure, it just made us feel good that our new Denver surgeon took the time to have a consult with Dr. Kays. And that Dr. Kays took the time to advise on Ella’s history.

We’ll see if tomorrow brings a more dry Bun. That’s what we would like to see. It’s a bummer that we have to spend the holiday weekend in the hospital. But we’re so thankful for Ella Renae.

We’re doing our best to focus on Him as we head into surgery week. Hanging onto words that embody the truth.

Colossians 1:9-14
For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding. And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.

The Brittain Family on August 29th, 2008 at 7:28 pm #

Praise God, you guys–He is good. We will keep petitioning Him for help as you watch over your precious little bun!

Fran on August 29th, 2008 at 7:39 pm #

Tina & Josh, what good news for you to hear that Ella’s Denver surgeon talked with Dr. Kay’s about her history and will talk to him again about his plans prior to her surgery!
Love you!
Know that you are in my heart and my prayers through out your journey. Fran

The Laz Fam on August 29th, 2008 at 7:54 pm #

The news of these doctors working together for Ella’s best gave me such joy. I immediately got a picture in my head – you’ve probably seen it – of that drawing of Jesus guiding the surgeon’s hands. She is greatly loved and well cared for by Him.
We love you all!

Christe Mitchell on August 29th, 2008 at 8:13 pm #

I am so glad to hear the doctors working together for Miss Ella. Your all in my prayers. God Bless, Christe

Kara on August 29th, 2008 at 8:42 pm #


Vicki/CO on August 29th, 2008 at 8:57 pm #

Praise God the doctors are working together for the good of precious Ella! That was great to hear! I continue to lift you all up for rest, for strength, courage, comfort, and peace for you, Tina and Josh, as you prepare for surgery, for Ella’s little body to be at it’s optimal best for the surgery, for her to get quiet rest beforehand resting in the Father’s embrace, for the surgeon and his whole surgical team, and most importantly, for God’s hand guiding everyone! Our God is an awesome God!

megan on August 30th, 2008 at 12:25 am #

May the angels surround you constantly and may God lay his healing hands around you. Keep fighting sweetheart!

Kathy on August 30th, 2008 at 4:30 am #

PRAISE GOD for ALL your doctors! I’m so glad that Dr. Kays remembers her and can help the doctors. Ya’ll are continually in my prayers!

When I first saw that first pic of Ella this morning, I had to do a double take. She looks SOOO much better, and her face looks longer! God is sooo good!

Roxie (Adrienne's friend) on August 30th, 2008 at 6:19 am #

Josh and Tina, Thank you for the detailed updates. You guys are in my heart and prayers often. We are greatful for even small improvements because hopefully they will lead to bigger ones.
I love the way Ella Bun holds her blanket to her mouth when she is asleep. Oh so sweet.
Love to you, Roxie

Cindy on August 30th, 2008 at 8:24 am #

I’m so glad that the IV Lasix is working, and think it’s great that you stuck to your guns even when you had to argue with the doctor about it.

Dr. Patrick sounds like a great surgeon and that’s awesome that he took the time to discuss Ella with Dr. Kays.

I’m praying that Ella continues to dry out, that you all get some much needed rest, and that her surgery goes well next week.

Debbie Bennett on August 30th, 2008 at 8:42 am #

God is Great!!!!! That is awesome to hear that they have collaborated. It is awful that most docs won’t listen to the parents. Albeit some parents don’t have a clue, but it is not hard to spot the ones that do. God only gives special children to special parents. The Lord knows before we (the parents) are even created that we are going to require extra brain cells. Luckily, Mark and I have already established ourselves with our many physicians. Thier usual question is: “So, what do YOU want ME to do?” This is great sometimes. But, there are a few instances where we have to respond that that is what they get paid to figure out. Some things are a guess and some are gut. I can say that I have never had a gut feeling go wrong and it is awesome that our docs follow it. I praise you and Josh for standing your ground. How awful that pulmo doc must feel now. I pray that as you establish yourselves in Denver, that you encounter the same grace. Give Ella a huge hug from us here in South Carolina….. On a side note: I have noticed in all of your pictures that you don’t have a “Hope” bracelet. WHY? Maybe Liz can help you with that. Every purchase we can create will help further our cause of trying to figure out this birth defect. Your sister in Christ, Debbie

Mary on August 30th, 2008 at 9:01 am #

So sorry to hear this latest chapter of Ella’s and the frustration accompanying it… I always look at the doc vs parent issue as the parent really has the micro managing viewpoint because that is what you devote your life to, and the doc has so many patients that it necessitates a ‘big picture’ type of approach. I hope the docs are able to develop the relationship where they truly appreciate the insight you have to offer. It is SUCH a relief when the relationship reaches that level and I think it will with time. You just have to go through a ‘vetting process’ of sorts! Just an idea – Gianpaolo is also very dependent upon diuretics – luckily oral lasix works for him, but during post op periods, the IVP doses would not do the trick so they put him on a lasix drip – worked great. This was an idea that I had to sell on numerous occasions as we had several different surgeons throughout the years – they would look at me like I was crazy, but when it did the job, were very appreciative because they were just as frustrated not knowing how to get on top of the fluid issue. Of course I know every child is different, but want to throw this out as we have been in similar situations. Hope things turn the corner soon!


LoriAnn & The Gang on August 30th, 2008 at 1:04 pm #

Well, if you gotta spend time in a hospital, you are in a good one. I am glad that you got some air mattresses; they are wonderful.
I am glad that the meds worked, like you were sure that they would. I don’t know if you will get an apology from your doctor, but, maybe, in the future he will be more apt to listen to parents like you: armed with knowledge and ready to shoot down the things you KNOW don’t work.
I am also glad that your doctor took the time to talk with Dr. Kays. I know that you both were hoping that would happen. It will make things better, and maybe faster, for the surgery, since this new doctor will know about Ella’s anatomy BEFORE going in.
We pray for y’all to get some good rest and for the Bun to feel better and get good and easy i.v.s
In Christ, LoriAnn

Dr. and Mrs. Robert D. Wootton on August 30th, 2008 at 1:34 pm #

We are always praying for the three of you. We will be lifting precious Ella up during her surgery and recovfery time. We will ask God’s guidance for the surgeon operating on her too. You are a precious family.
In Christ.
Dr. and Mrs. Robert D. Wootton

Heidi Ham on August 30th, 2008 at 1:38 pm #

Josh and Tina – thank you so much for continuing to update all of us during this especially challenging time. I am lifting up your needs to Him on your behalf – Ella you are such a joy! Lord please hear and grant all petitions on behalf of this beautiful family.

Joel Snyder on August 30th, 2008 at 4:45 pm #

Ella, I was so glad to see you today and you look much better. I will be praying for you to keep up the progress before surgery. I will check on you later. Love,Grandpa!!!!!!!!!!!!

Jim and Char Jordan on August 30th, 2008 at 9:07 pm #

I cried a bucket since Jim and I have been praying that the doctors can put their ego’s on hold and put their efforts together to help our littlest angel. We love you, we trust in the Lord to lead you in the way you should go for Ella. Love, Jim and Char

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