Feb
25
    
Posted (Josh) in All Posts on February-25-2009

Ella is off to sleepy land and the procedure has started. Please pray for a successful opening of her SVC.

Heavenly Father. May your hand be on our precious child and the doctors as they move forward in this procedure. Keep her safe and stable, and guide the hands of all all involved. We pray for no complications, and for success in her SVC being opened up. We trust you in all things Lord Jesus. Amen.

UPDATE 12:40PM (MST) By Josh: We were updated and told that they now have access and are actually starting the procedure. The told us Ella’s access points would be from her inner thigh and each side of her neck. It took a full hour this time, just to get the initial access. Last time, they were able to get access in less than half the time.

UPDATE 1:30PM (MST) By Josh: We were just told that they were able to get a wire through her SVC!!! They have not started dilating the vein yet, or attempting to place a stent, that’s the next step…but this is huge. Praise God!!

UPDATE 2:30PM (MST) By Tina: The nurse called: so far, Ella has been tolerating the procedure. They do have access in her thigh and one point of access on each side of her neck. Since they were able to get access, they have been taking their time to balloon the vein from the top to the bottom, trying to open it up more and more. It is a slow process to open up the vein. Depending on how the ballooning process continues, they may try a stent if they can get it to open up enough. Keep praying for a miracle – – that we can get that stent placed in her vein to keep it open!

UPDATE 3:30PM (MST) By Tina: Praise God!!! Thank you for all the prayers. The nurse just called. Ella has been doing great through the procedure. As of this point, Dr. Fagan has been able to place 2 stents in Ella’s superior vena cava!!! If any of you could see the occlusion and how bad Ella’s SVC looked, this is a miracle! We knew it was a long shot, but we had to try. And everything points to great things for Ella’s little body as she grows. Right now, they are monitoring the stents to see how her body is responding to them (testing various venous pressures in her heart) and they are taking video and pictures. Hopefully by the time they call in the next hour, the procedure will be complete and we will get an update from Dr. Fagan. Mommy and Daddy are a bit in shock right now, but very elated at the news!!!

UPDATE 9:45PM (MST) By Tina: Sorry for the long timeframe between updates. Dr. Fagan came out to explain the procedure and started off by just flat out stating that, “We were very lucky”. Josh quickly interrupted him and said, “Actually, we think it is a miracle”. Dr. Fagan paused and agreed, “Sure, I’ll agree it was a miracle”. He then went on to explain the various techniques that he used to accomplish the task.

Without going into all the detail, he explained concepts like connecting the catheter wires from her leg and her neck in a flossing technique to pull a balloon up through her SVC. One portion of her SVC in the center area was refusing to balloon, so they used a special balloon technique that has the strength of up to 40 atmospheric pressures (e.g. like a rock). It took 24 atmospheric pressures to dilate the vein enough! That is a tremendous amount of pressure used without shredding the vein. Another surprising thing: Ella developed collateral veins over the past 18+ months to compensate for her SVC not being open. They were just below the surface of her skin and you could see them on running along her chest like a maze. As time continued on, they were getting more and more pronounced. Within minutes of the procedure, they were already less pronounced! Overall, Dr. Fagan simply expressed that he was surprised that the procedure was successful.

We went to see Ella in the recovery room. She was just waking up from the anesthesia and was cranky and seemed uncomfortable. She was very fussy and seemed thirsty. Her throat is scratchy from the breathing tube. We knew she was likely hungry since she had not eaten since 3:30am. From there, they opted to admit Ella into the 9th floor, on the cardiac wing. They plan to monitor her overnight and have ordered a chest xray, EKG and echocardiogram in the morning. If all looks well, they plan to let us go home.

Ella will have to return in 6 weeks to have another EKG and echocardiogram. She will be on antibiotics for a short time as well as a daily regiment of aspirin for several months to help her body to not form clots over the stents.

We’re back in one of our timeshare units on the 9th floor, facing the mountains. Hopefully, we can return home tomorrow! For now, we are going to try and get some sleep.

Thanks so much for all the thoughts and prayers today. As you have witnessed, we were “lucky”. We know that God was watching over Ella and guiding and directing Dr. Fagan’s hands during the procedure. And the Lord hears our prayers, so thank you for lifting up Ella to Him on this very important day.

Psalm 145:19 (NIV)
He fulfills the desires of those who fear him;
he hears their cry and saves them.



Jennifer Harris on February 25th, 2009 at 11:57 am #

Our thoughts and prayers are with you and your family. GOD will bless Ella with his mercy and grace.
Peace be with you
jennifer/chelsea

Tara Hayes on February 25th, 2009 at 11:57 am #

We will stop to pray now! Thanks for reminder…

Amber Riley on February 25th, 2009 at 11:57 am #

Praying for Ella and her mommy and daddy too!

Marge (Indiana friend) on February 25th, 2009 at 11:58 am #

Amen as I offer your prayer above with you for His fullest blessings this day.

Tracy Mahoney on February 25th, 2009 at 12:00 pm #

Prayers for Ella!

Estela Williams on February 25th, 2009 at 12:01 pm #

Praying for Ella…

Becca Richards on February 25th, 2009 at 12:04 pm #

All my fingers are crossed!

Lisa Tufano on February 25th, 2009 at 12:08 pm #

You and your family are in my thoughts today, Ella!

Tracy Mitchell on February 25th, 2009 at 12:08 pm #

Praying for you guys in TN!

Dawn Franck on February 25th, 2009 at 12:18 pm #

We will be thinking about you guys and sweet Ella today and we are praying for a successful surgery and a fast recovery. Lots of Love Dawn, Mike and Alli

Jim and Char Jordan on February 25th, 2009 at 12:22 pm #

We are always with you in prayer and understanding. We are waiting for wonderful successful news.

The Laz Fam on February 25th, 2009 at 12:27 pm #

We love you and your beautiful girl, and we are praying for all of you!

MOORE FAMILY on February 25th, 2009 at 12:40 pm #

PRAYING FOR ELLA DURING HER SURGERY,LOVE YOU GUYS.

Christe Mitchell on February 25th, 2009 at 12:48 pm #

Keeping you in prayer today Miss Ella!

whitney on February 25th, 2009 at 12:59 pm #

a faithful follower of ella’s journey, stand in awe that shuch a small child has effected such a greiveing mother…i pray each day for ella and her life here, i know that the lord has proven to be so faithful to ella, i pray that he continues to hold you both and ella in his hand as he leads you to where he wants you…good luck ella, show em how its done

Elizabeth Norman on February 25th, 2009 at 1:09 pm #

Your precious Ella is in our prayers.

Eli on February 25th, 2009 at 1:17 pm #

Praying for a miracle for little Ella, and for strength for the entire family.

Kelly "Supernanny" Fischer on February 25th, 2009 at 1:26 pm #

Oh Bunness. I’m just sitting at home in silence… no concentrators on, no CinderElmo, no Bunness noises. Just the cats. I love you all very much. See you soon.
In Him,
Supernanny Kelly

Debbie on February 25th, 2009 at 1:32 pm #

Ella is in our prayers.

Eve Johnson on February 25th, 2009 at 1:34 pm #

Praying and waiting with you all.

megan on February 25th, 2009 at 1:40 pm #

Doodlebug I just got to see your mom and dad and had a great time catching up! I hope that you are having great dreams and I just know God has his hands on the surgeon so sweetheart the angels are there! =)

Terri Trainer on February 25th, 2009 at 1:42 pm #

Daddy Josh, that’s a stressed face if ever I’ve seen one. Love you guys – T

Nancy Costas on February 25th, 2009 at 1:45 pm #

Awesome news about the wire, Praying for all of you! Hope the 2nd half goes just as good.

Joan and Steve Odell on February 25th, 2009 at 2:09 pm #

Prayers for each of you and the team taking care of Ella. Hugs and Lord Bless – Steve and Joan

Williamsburg on February 25th, 2009 at 2:11 pm #

Love, hugs, and rejoicing. XOXOXO

Cathie Firestone on February 25th, 2009 at 3:19 pm #

We are praying in Cleveland, OH…Ella is in His hands as always and we are expecting and praying for the BEST outcome!

Rainey Family on February 25th, 2009 at 3:28 pm #

Many prayers to you all.

whitney on February 25th, 2009 at 3:39 pm #

this would just be wonderful if it helps her rest and eat which cant help mut let her grow…how scary to think the svc was in that shape.

Amber Riley on February 25th, 2009 at 3:49 pm #

WONDERFUL!!! Hooray Ella!!!

Motormouth on February 25th, 2009 at 3:51 pm #

Yay! yay yay yay! Praise Jesus!

julie kirk on February 25th, 2009 at 4:18 pm #

wonderful!!!!!praise God.

Kelly "Supernanny" Fischer on February 25th, 2009 at 4:39 pm #

Supernanny’s in shock too!! This is HUGE!! Oh my gosh…. Praise God!!! Hope to see you all in a bit. Love you so much!

Lisa Correia on February 25th, 2009 at 4:44 pm #

Yeah God!!! Yeah Ella!!! Yeah Dr’s!!! Yeah Mom and Dad!! I am so happy to hear that things are going well!! Ella has been on my mind all week. What a little trooper she is!

Eve Johnson on February 25th, 2009 at 5:42 pm #

God is amazing! hooray!!!!

Debbie Bennett on February 25th, 2009 at 6:16 pm #

God is Good!

eileen on February 25th, 2009 at 6:16 pm #

Yay, so glad to hear this went so well. I hope things continue to go well for you and the little kiddo…I left you an email on your facebook site. Take care of yourselves!

jenn m on February 25th, 2009 at 6:29 pm #

Super YAY! Go on with your super self, Ella! So happy to hear good news!!!

Jenny G on February 25th, 2009 at 7:37 pm #

Wonderful news!!!

Krista PT on February 25th, 2009 at 7:41 pm #

So glad to hear the SVC highway is open and ready for traffic! Looking forward to the next update. Love you, Bun.

kristin thompson on February 25th, 2009 at 7:48 pm #

awesome news! i am praying for you all…hugging you tight in my heart. Get sweet sleep!!!

Racheal Morris on February 25th, 2009 at 8:28 pm #

Fantastic! I am crying tears of joy for all of you!!! Ella is one tough chick, she must get that from her mom and dad.
love
The Morris Family in Jacksonville, FL
Brian, Racheal, Thomas and Daniel(CDH survivor).

aunt Marla on February 25th, 2009 at 9:40 pm #

I am rejoicing at this news. Couldn’t go to sleep until I checked on you tonight. Praise God! This is huge!!!

Pat & Bob Hadden on February 25th, 2009 at 11:31 pm #

So happy to hear the news. We’ll be seeing Kathy & Herb next week when Bob’s mom is out for a visit. And you know we’ll all be talking about you!
Much love,
Bob and Pat

katie mendoza (australia) on February 26th, 2009 at 1:11 am #

woohoo go ella you are such a little fighter.
big huge hugs

The Brittain Family on February 26th, 2009 at 3:11 am #

Wonderful news. Prayers for an uncomplicated recovery. May the Lord use these stents for His glory. Praise Him!

GrandmaSherl on February 26th, 2009 at 5:17 am #

The power of Prayers. AMEN!! So thnakful things went well.

Joel Snyder on February 26th, 2009 at 5:40 am #

Ella, My little “Gator Girl” you are amazing and so are your Mom and Dad. I am still praying that your recovery will be complete. I am working and still can’t believe all the good news and hope you will start a new path of steady progress. I want to thank all the wonderful people that prayed for you because that is what it takes for miracles to happen. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!

Becca Richards on February 26th, 2009 at 6:13 am #

Praise God! He is still busy with those miracles! Luck, my foot! I’m so happy for our girl!

Love, Lesli

Becca Richards on February 26th, 2009 at 6:20 am #

Yay!!!!!!!!!! Phew! Now I can uncross my fingers! (JK)

Marge (Indiana friend) on February 26th, 2009 at 6:25 am #

PRAISE GOD!He is Awesome! Thanking Him for His miracle of Ella. God Bless You sweet baby!

Dana Chambers on February 26th, 2009 at 7:01 am #

Amazing, Fabulous, Incredible, Breathtaking! I hope someone slept last night!

Williamsburg on February 26th, 2009 at 9:01 am #

Our God is absolutely amazing – and so is the West family. Ella was in so many of my dreams last night – hope you three got some sleep as well! All our love. XOXOXO

megan on February 26th, 2009 at 9:05 am #

Doodlebug YEA I am so happy that things went well.. I hope you get to go home today =)

Terri Trainer on February 26th, 2009 at 9:58 am #

Woop-woop and a sham-a-lam-a-ding-dong!! I think that just about expresses my joy! God is good all the time, but it certainly is grand to see His mighty hand at work. I hope there’s a viewing area in heaven where we can see all of the lives that have been impacted because of this journey. You guys rock!! Love you – T

Eve Johnson on February 26th, 2009 at 10:23 am #

Lucky, ha! God is surely with you, my friends, and continues to perform miracles before our very eyes!

LoriAnn and the Gang on February 26th, 2009 at 10:25 am #

So happy for y’all. Your “luck” never will run out with the Lord guiding everyone involved in your lives. Ella is so blessed to have parents that listen, and act, to the Holy Spirit. I don’t write as much, obviously, but you are always in my thoughts and prayers. God Bless. LoriAnn

Alicia on February 26th, 2009 at 10:28 am #

Praise God!! WTG Ella and praying for a fast recovery and continued healthy growth for you.

The Williams on February 26th, 2009 at 10:29 am #

What a blessing, Through God anything is possible. Love you guys!

LoriAnn and the Gang on February 26th, 2009 at 10:31 am #

Oh yeah. I absolutely LOVE the picture of Tina and Ella at the end. What a loving “mommy and me” pic. That baby is sure blessed.

Jim and Char Jordan on February 26th, 2009 at 3:14 pm #

We are so very fortunate to have such wonderful blessings today. Perhaps one of the accomplishments of many people many prayers and thoughtful living. We are so grateful for the progress. We will continue to offer your little family prayes continually since we need to pray always. we are so proud of your example of love and understanding Josh and Tina. Love, aunt Char and Jim

Barbara Mullins on February 26th, 2009 at 3:26 pm #

Praise God from whom all blessings, and miracles, flow!

Still praying for you.

Barbara

Schultz Family on February 26th, 2009 at 11:07 pm #

Wonderful news! SO glad to hear things went so well! God is miraculous!

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