Posted (Tina) in All Posts on September-12-2007

About 6:30pm, we met Dr. Kays at the hospital and talked about Ella’s next steps.

Dr. Kays told us why he wanted to proceed with replacing the left chest tube. He pulled up Ella’s latest chest x-ray from today to show us how much fluid was in her pleural cavity.

It was not a surprise. When we saw her tonight, you could tell that she was more puffy, was having a tough time breathing and did not feel well. Then, he showed us a chest x-ray from a few days ago – wow, what a difference!

Also, when we arrived her latest blood gases had gotten worse and there was no chest fluid coming from the right chest tube at all, yet you could tell that there was fluid in her chest from the x-ray.

So, one of the questions we asked him was why he decided to remove the left chest tube on Monday versus the right chest tube. Since Ella’s diaphragm was missing on the left side and there is a patch there from her repair surgery, the longer that the chest tube remains in her, the greater chance of infection.

We asked if he would use the same incision to re-insert the chest tube or if he would be performing a separate incision. He said that he was not sure until he was in surgery mode and looking at the existing incision. His gut instinct was that there is higher risk by using the same incision, but then again, he better feel strongly if he is going to insert a chest tube in a brand new location. He doesn’t just want to give her another scar on her side without good reason.

After a long discussion of her fluid issues and all of our options, the best option at this point was to re-insert the chest tube on her left side.

He mentioned that he wanted to replace the left chest tube, let her stabilize and then consider replacing the right chest tube late this week, if necessary.

Well, we got a call around 8:45pm and the chest tube procedure had been completed. Ella did fine during the procedure.

Dr. Kays is always thinking on his feet and surprising us: he decided to replace both chest tubes! After he thought about it more, he knew that there was fluid in her chest on the right side from her x-ray earlier and yet it was not draining (most likely due to a protein build up in the line). So, he opted to replace both chest tubes and luckily was able to use the same chest incisions.

When we called this evening at 11pm, already her fluids were beginning to drain. Praise God!

Just since the procedure was finished around 8pm, she has drained 62 total from both chest tubes. That is a big difference from zero over the prior 24 hour period. Also, her blood gas performed at 9pm shows that her body is getting happier, cO2=61, pO2=109. So, already we are seeing improvement. Thank goodness that Ella is getting some relief.

After we let her stabilize and wait patiently, we really need the fluid issue to resolve on its own. If it doesn’t, the only other options to explore are not real appealing.

We can have the SVC procedure completed again, where they open up her collapsed superior vena cava going into her heart. This operates under the assumption that the blockage or lack of flow into her superior vena cava is backing up, causing a leak of the lymph fluid out of her thoracic duct into her pleural cavity. Dr. Kays is not in favor of this route because the risks are high and we did not see any benefit from doing the procedure the last time.

After that, the only other option is to consider invasive surgery. This is a last resort and is only considered when you have tried all other therapies and the fluid issue is not resolving. It makes the assumption that the thoracic duct is damaged. Your thoracic duct is complex and is part of the lymphatic system which runs throughout various parts of your body. The surgery involves trying to locate a leak in her thoracic duct and repairing it. There could be a single leak or various leaks anywhere in the thoracic duct and there is not a way for them to locate the leaks with any precision. Therefore when surgery is performed, the success rate is not real high.

As you can probably tell, our hearts are heavy. We really want to see Ella overcome this fluid issue so she can move on to other milestones.

Please continue to pray for our baby girl. Our heart’s desire is to see the Lord heal this fluid issue miraculously. Ultimately, we know that He is in control and that we can trust His plan.

Hebrews 4:16

16 Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.

Laura Blackwell on September 12th, 2007 at 9:14 pm #

Oh dear, so sad to hear this news! Jesus, blow us away with a healing only You can do! Touch her little body once more and make her 100% well for your glory!

Angie on September 12th, 2007 at 9:17 pm #

Be strong Ella. We are praying for the fluid issue to resolve on it’s on. My thoughts & prayers are with you Tina & Josh :). Hugs & Kisses to Ella ~Nurse Angie

Joel Snyder on September 12th, 2007 at 10:19 pm #

Ella, Just getting ready for work. I am hoping that the procedure from this afternoon is the trick for the fluid reduction. I will be praying for you along with Taco,Manny, and the Dino’s. Josh and Tina thanks for the update. Please take a deep breath and try to be calm. I Love You, Grandpa!!!!!!!!!!!!

Melissa Morris on September 12th, 2007 at 10:30 pm #

Trust, trust in the Lord – Lean not on your own understanding (those lyrics just came to me)
After reading your post tonight… I must admit, my heart just sank.
How hard this must be for you all. Our God is a God of miracles… Lord we pray that you would do a miracle in Ella. Remove all of the fluid in her little body. Continue to guide and direct Dr. Kays. We praise you that Ella was able to sustain while her chest tubes were replaced and we thank you that she was able to get some relief and start to recover from the swelling. Continue Lord to drain the fluid. We stand before your throne and pray for continued relief and healing for Ella and perseverance, peace, rest and strength for Josh and Tina.
Flow fluid, flow… right from Ella’s body.
Go Ella! Stay strong and keep up the good fight!
Hold tight Josh and Tina. May you both have renewed strength tomorrow.
Sleep well and sweet dreams everyone.
Love, Melissa

Roberts Family on September 12th, 2007 at 11:10 pm #

I will be praying for Ella as I fall asleep tonight, and will lift her up whenever my baby awakens during the night. Be strong in our Lord.

Charlotte Rehrig on September 13th, 2007 at 4:09 am #

Thank you, thank you for the updates. God bless all of you.

Joan Odell on September 13th, 2007 at 6:28 am #

Bless your hearts!! I understand how hard it is to stand by and watch your child go through these things and to experience the ups and downs of emotions. I also know how much God loves the three of you and only through our faith in him to we succeed in anything. I’m very proud of both of you – this road is not a simple one to walk – know that our prayers, love and hugs are with each of you. Lord Bless – STeve and Joan

Williamsburg on September 13th, 2007 at 7:18 am #

Our hearts are heavy with you – it is so hard wondering why the Great Physician is allowing setbacks and continued challenges in Ella’s condition. All we can do, and pray for you, is to continue to trust His character and heart for you in the midst of the valley, knowing how precious Ella is to Him, even more than to us, difficult as that is to imagine. We pray as well for miraculous intervention, both in Ella’s condition and in your hearts and minds as you continue to press into Jesus in combined grief and hope, trust and petition. We love you and are with you in spirit. XOXOXO

mom on September 13th, 2007 at 8:04 am #

Good Morning Sweet Ella…………
Have a Great Healing Day! I love you,
Hugs & kisses Grandma

Lesli on September 13th, 2007 at 8:35 am #

Father God, we pray for continued strength for Josh and Tina. We thank you for yet one more opportunity for you to do something miraculous that only you can do. Please, Lord, resolve Ella’s fluid levels…you know every cell of her little body and it is no mystery to you. We pray for patience for Josh and Tina as they wait on you. Lord, you have been so faithful every step of the way with Ella. We trust in you that she is in the palm of your hand. It’s just so hard to wait, Lord. Please help us all with that. Thank you for calling this sweet family unto yourself. In Jesus name, Amen.

Kelli Billman on September 13th, 2007 at 10:19 am #

Ella, I’ve said it, I’ll say it again…scars are COOL girl!! Hang in there West family and we pray for this fluid business to resolve itself!!

John & Estela Williams on September 13th, 2007 at 12:36 pm #

I continue to be inspired by your strength and faith in God… through God anything and everything is possible. It was great to hear that the procedure worked and was able to drain fluids dramatically. Stay strong baby Ella. God Bless

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