Sep
26
    
Posted (Josh) in All Posts on September-26-2008


Ella was wheeled down to the cath lab at 11am this morning. The procedure itself didn’t get started until around 12:20pm. Tina was able to go into the room with her while the anesthesiologist put her to sleep with some gas.

The doctor performing the heart cath mentioned that he may want to balloon open some veins (possibly her SVC) and could potentially use a stent to keep it open.

I just received a call (1:20pm) from the nurse practitioner letting me know that they were able to get access right away (Praise God!) and they were already testing the pressures in her heart.

At the moment, Tina and I are both outside soaking in the beautiful weather. I’m here escaping into work and she’s taking some alone time to make some calls.

We’ll post updates as the details come in from the procedure. Thank you for continuing to lift us all up in prayer.

Thank you Jesus for this beautiful day. We praise you for the gift of life, and the miracles you’ve performed in the hearts of many through our precious daughter. We ask that you give revelation to the doctors through this procedure, enabling them to more effectively treat our girl. Father, keep her safe. We pray for no complications and for stability during and after the procedure. We completely surrender and trust in you Lord. Praise you Jesus. Amen.

UPDATE 5:45pm MST (by Tina):
Ella was been stable throughout her entire procedure – praise God. She was in the procedure for about 4 hours. As Josh stated before, they had no problem getting access through her right leg. They weaved the catheter up to her heart and began to test the pressures and look at the anatomy of her heart and lungs.

The good news is that most of the major concerns with her heart were alleviated. The pressures in the different chambers were not normal, but not nearly as bad as they expected. They did confirm her pulmonary hypertension is moderate and on the arterial side. They feel that the sildenafil and captopril medicines play a huge role in keeping her stable.

Also, they were looking for 2 other potential major problems: narrowing/blockage of the veins in her lungs – those were not present. Her right lung looks good and although her left lung is smaller, both appear to be functionally working. Both have evidence of chronic lung disease with some abnormalities, but there was no narrowing of the veins coming from the lungs into the heart. Another concern was the pressures in her heart. Yet, when they gave her nitric oxide and more oxygen, she responded favorably and the pressures came near to normal.

They’ve confirmed that her SVC (superior vena cava) is completely occluded and cannot find veins on her right side going back into her heart. They are only able to see collateral veins that loop all over the right side of her body.

They were hoping that they might be able to get access in some way to the SVC so that they could try and balloon it open. They tried going into her right neck and her left neck, but did not have success at locating a place where they could balloon it open. When we looked at the images, literally there is no SVC going into Ella’s heart. The SVC is not just occluded; the opening to that part of her heart is closed off completely.

So doing the heart catheter certainly eliminated a lot of scary diagnosis that they thought she might have had going into the procedure. It told them which medicines are going to be the most effective in treating her. The plan for now is to increase her sildenafil dose to 6mg per kilo, three times per day to help with her pulmonary hypertension and increase the aldactazide diuretics to .75mg per kilo every 24 hours, divided into two doses. The plan is to watch her clinically and increase the meds as needed.

We are supposed to have another Care Conference soon to have everyone brainstorm about the best plan of action on a long term basis. Another thought: Dr. Fagan who did the procedure today took the time to show us all the images of the procedure. It was amazing to see the video clips of Ella’s heart, lung and collateral veins. Dr. Fagan thinks it might have more benefit than risk to schedule another heart catheter procedure to see if they can try to re-create the path from her heart through her SVC. If Ella’s body had that vessel open and provided another way to drain into her heart, it would likely relieve some of the pressure and it could be playing a huge role in her fluid sensitivity. If they could re-create the pathway of her SVC, they would likely place a stint to keep it open.

This is the same theory that Dr. Kays had about her fluid sensitivity. Back in Gainesville, he wanted us to consider the same type of procedure. However, the cardiology staff at Shands did not have an expertise for this type of procedure and they stressed how risky it would be for Ella, given her prognosis at the time. So, we held off.

Dr. Fagan can’t guarantee that he could get the path re-created, but he could try with minimal risk. If he does get the path re-created and places a stint, he can’t guarantee that it would resolve her problems. But on the other hand, it might. Something to consider for Ella.

The course for the next few days is to stay steady and play around with the same cocktail of medicines, trying to get Ella in a good place. I’m hoping that her Care Conference can be early next week and that we can talk about taking her home soon!

Thank you for the amazing outpouring of support and prayers. It meant so much to have people praying for all three of us today. We’re overwhelmed and overjoyed at everything He has done through this journey. We continue to trust and be in awe of the path He has chosen for us to follow.



Roxie (Adrienne's friend) on September 26th, 2008 at 1:02 pm #

Lifing you up in to His Hands is my prayer now to hold you and your family safely through this day and through Ella’s recovery time. Roxie

Heidi Ham on September 26th, 2008 at 1:02 pm #

Praying for you all!

Anne on September 26th, 2008 at 1:06 pm #

God bless.

Tara Hayes on September 26th, 2008 at 1:09 pm #

praying now!

the Lizotte family on September 26th, 2008 at 1:09 pm #

Roxie said it well~
Lifting you up in to His Hands is my prayer now to hold you and your family safely through this day and through Ella’s recovery time. Roxie and LL

Megan on September 26th, 2008 at 1:11 pm #

sending lots of prayers!

Gloria & Red Jacobsen on September 26th, 2008 at 1:16 pm #

We are all in prayer for little Ella!

Kathy on September 26th, 2008 at 1:39 pm #

She is in my prayers today. You could tell in those pics she just wasn’t too sure about what was going on. Bless her heart! I know she is covered in prayer today, and God is an AWESOME GOD!

John & Estela Williams on September 26th, 2008 at 1:48 pm #

Praise him… 1st try! YES

Kelly the Nanny on September 26th, 2008 at 2:17 pm #

Yay Ella! I got home… I was bummed I couldn’t come over to the hospital, but my sister needed some help and I needed to get packing or there was no way I’d be ready tomorrow night!

We had a huge group meet at CCU–my guess is close to 200 people. I said a brief thing about the condition and how I’m involved and mom and dad and prayers rung forth–both out loud and in people’s hearts. people were in tears, and I certainly was as well.

What a way for God to prove His community to us! Sometimes it feels as though we may be walking alone, or with very few in this fight against humanity and the world, but when we congregate, what amazing things happen!

I hope to hear from you guys after Ella’s out of the surgery and things are starting to settle down. Otherwise, see you tomorrow night! πŸ™‚

Huge hugs for everyone, tons of love, and endless prayers for you Josh, Tina, and Ella (and all the staff, of course.)

In Him

Jim and Char Jordan on September 26th, 2008 at 4:05 pm #

My oh My, Kelli’s post has really gotten to my heart. As if what is happening to Ella and Ginny’s dad is not enough. We are praying and faithfully watching for God’s help in all the difficult circumstances that prevail. We love you and are actively praying for a beautiful outcome.

Amber on September 26th, 2008 at 5:34 pm #

Ella sweetie I have been praying for you all day! I have been following your story for months and you are such an amazing little girl. Stay strong!

Kelly the Nanny on September 26th, 2008 at 5:55 pm #

Great to hear the update and that the surgery went well. I’m sure your hearts are relieved, even though you had one of the world’s best working on the Bun πŸ™‚

I’m excited to see what the next few days will hold. It will be tricky timing, I’m sure–surely we’ve come to expect the unexpected with Ella–but hopefully baby and mom can come home to the townhouse next week and have some good R&R before everything else gets super chaotic the following week!
I’ll be taking lots of notes at the Red Cross classes and share what I learn with you, Tina. Can’t wait!

Big hugs and tons of love for everyone.

2 Chronicles 13:12
“God is with us, He is our leader. His priests with their trumpets will sound the battle cry against you. Men of Israel, do not fight against the Lord, the God of your fathers, for you will not succeed.”
There is a sickness–not a person, or a nation–that is essentially defying God. Of course, Satan has tried to destroy, and Christ has turned Ella’s condition and her whole life into a fantastic message for her parents to share and proclaim. But we can all rest assured that no heart problems or fluid problems or any problems at all will defeat the Lord our God.

Praise be to Him!
See you in about 24 (or 25 1/2) hours. πŸ™‚

Joel Snyder on September 26th, 2008 at 5:57 pm #

Ella, I am overjoyed that you went through the procedure so well and that things look good. I just got home from the house in Lone Tree and called Mom and read the update. I am looking forward to seeing you soon. It is time for you and Mom and Dad to get some rest. I am praying for all three of you and thanking God for taking such good care of you. I will see you soon. Love,Grandpa!!!!!!!!!!!!!!

Amber on September 26th, 2008 at 6:26 pm #

Ella you rock!

Chambers Family on September 26th, 2008 at 7:31 pm #

Rest sweetly – West Family What a day!

Laura (Saudi Arabia) on September 26th, 2008 at 8:45 pm #

Heavens, miss a couple days and look what happens! Goodness gracias I am dazed by what you guys work through and pray through. Hind sight can be 20 20 I am so grateful that you all found Dr Kays, what an amazing man…here is Ella and in the next best situation it appears, our God is good. Take special care of each other, take rest when you can. Peace Laura

Christe Mitchell on September 26th, 2008 at 9:18 pm #

Your all in my prayers.

Laura Marold on September 26th, 2008 at 9:19 pm #

Dear Tina and Josh, I’m praying for you three today. That is a lot of new information on Ella. It is a lot to absorb but again maybe this will be the answer to so many mysteries surrounding Ella’s health. Isn’t it a blessing that this hospital specializes in heart and lung conditions right when Ella needs this?
I hope you all have a good night tonight. God bless you. Love, Laura M.

The Brittain Family on September 27th, 2008 at 6:14 am #

It’s tough to learn of the challenges that Ella continues to face but on the other hand….it’s been so hard not to know. We’re trusting that this is God’s wonderful timing for Ella and that the doctors and surgeon’s involved will make good choices. We KNOW that the Lord will direct you and give you the help that you need with packing for your move, decisions regarding careers and Ella’s care. Our prayers remain with you.

Tammy on September 27th, 2008 at 8:35 am #

Mercy, what a day! But with it came some encouraging news and insight to help Ella in the days ahead.
Rest well sweet Ella. My thoughts and prayers are with all of you today.

Blessings,
Tammy

Matt, Abby, Austin & Caed on September 27th, 2008 at 2:28 pm #

We’re praying.

Joan and Steve Odell on September 27th, 2008 at 2:46 pm #

What joy that she did so well. Prayers continue for all of you and the successful healing of Ella so you may return home soon. Our love and hugs! Prayers continue – Steve and Joan

kristin on September 28th, 2008 at 8:54 pm #

we are praying and praying and calling all angels. Rest well West family. Repair little Ella. We love you all.

Kristin

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