Posted (Tina) in All Posts on April-10-2010

Ella and I both caught rest last night, as the situation would permit. Being in intensive care means that they have to conduct vitals once every 2 hours. Each time they came in and started touching her, she would wake up and cry. Then, she kept crying because she was in pain. Now, the window between doses of Morphine has narrowed to once every two hours. If we don’t give her the morphine, she can’t sleep due to discomfort.

I wish that she was not outputting as much bile, but in fact she did output about 500ccs of dark green bile from her g-tube. The last time she passed gas or had a bowel movement was Wednesday morning. She had repeat abdominal films this morning – they are unchanged from yesterday. This is better than them looking worse although clinically, she is doing worse. She is in more discomfort and requiring more pain meds. Her belly is more distended. Last night at shift change they measured her belly and it was 1.5cm larger this morning. She is going in the wrong direction.

Upon exam this morning, the surgeon did a rectal exam to see if there was any presence of stool. His glove was clean when he pulled his finger from her rectum – not a great sign. If there was some presence of stool, they might try giving laxatives to help push it along. But if the obstruction is in her small intestines and is a full obstruction, giving laxatives is not going to help.

It is such a hard call for them. I think if she was a healthy toddler without other complications, the surgery would have already taken place. The first films on Thursday showed 6-7cm of dilation in her small intestine, which even in an adult, is huge and warrants immediate surgery. But because of all her other health complications and the fact that she was taking anti-coagulants as part of her daily medicines (aspirin and Plavix to help her heart stents remain open) caused great concern for the surgical team. With anti-cagulants in her system, it is a huge risk for bleeding in surgery. So, they opted to place her in intensive care and watch closely to see if rest for the intestines would lead to an improved status. The films on Friday looked better than Thursday, but still not good. Today, they look about the same as Friday. I’ve been told that they are coming by in about an hour to discuss which plan of action: wait longer or try surgery.

Thanks for all the prayers for sweet Ella. And please pray for me and Josh – it has been emotional to realize that she may need another major surgery – she’s been through so much already. It’s been even more difficult since we are at a hospital that is not familiar with Ella. We’ve been through this before when we first came back to Denver and Ella needed surgery. At that time, only Shands and Dr. Kays knew Ella.

We know that ultimately He is control. The Lord decided that this was the place for Ella to be when this obstruction happened. The truth: He orchestrates and authors every detail, only wanting the best but allowing whatever is necessary for His glory. Right now, we look to Him for our comfort and knowledge that whatever may happen, He is in charge of all the details.

This doesn’t make the emotional part any easier, so please pray for us as parents that He will equip us to make decisions for Ella today. And please pray for the doctors involved in this decision-making process – that they will have unsurpassed knowledge and discernment for Ella’s needs.

UPDATE 12:00 PM – By Josh
It’s time for surgery. It is more serious than expected. They’ll be doing a midline incision…didn’t expect that. There’s even a possibility of reherniation of her diaphragm. They think they might see some loops of intestines in her chest. Please pray for our sweet girl to stay strong through this process. She will be intubated for awhile as well. They have indicated this is a very big surgery, very high risk, and multiple issues to contend with.

Heavenly Father, we trust in you, we rest in you. Please watch over our precious child. She is your sweet girl. Her life for your Glory. Thank you Jesus. Amen.

UPDATE 7:30 PM – By Tina

Thanks for all the prayers. Ella came through surgery like a champ. There is no question that she needed the surgery. It was confirmed that there was a large obstruction in her small intestine. The small intestine was very swollen and distended causing the large back up of bile and all of her discomfort. We are so blessed that they did not have to cut or resection the intestine. They pulled out her entire intestine to check all of it. None of it had died, so they did not need to cut any away. Instead, they just made a small incision and flushed out her bowels. The obstruction was in the small intestine, near her spleen. The surgeon noted that this was likely a problem that had been occurring for quite some time due to the scarring on the intestine. We have had small incidents like this before and that was a red flag that an obstruction was likely in our future. In previous days, it would resolve on its own without surgical intervention. Today confirmed that the surgery was absolutely necessary.

From the xrays, they thought Ella might have re-herniated her diaphragm. Thankfully, the gortex patch is still intact with scar tissue covering it (Thanks to Dr. Kays!). However, there was a portion of Ella’s intestine that was stuck to the diaphragm area which confirmed what they noted on film. Although this was not the area of obstruction, it may have become an area of concern, so they addressed that as well.

Ella is not out of the woods. The next 48 hours are absolutely critical. They expect her to get puffy and swollen and not look too good. She is intubated and on a ventilator. This was major abdominal surgery where they completely removed her entire intestine. Her body is going to be angry for a couple of days before it settles down and starts recovering. We just need to pray that she can maintain her fluid status (the docs here have not experienced Ella and fluids), and that she remains comfortable.

Thanks again for all the support and prayers. Our sweet little Bun is doing well and both of her grandmas are at the hospital this evening to provide support. We’ll update again tomorrow.

UPDATE 9:30 PM – By Tina
I thought that I would not update until tomorrow, but I did want to share that Ella has a temperature of 102.7 degrees. It might be a rough night. Please continue to pray for her!

Fran on April 10th, 2010 at 10:06 am #

Lord we know that you will continue to be with Ella, her parents, and the doctors and nurses that care for her. All are in our prayers.

Julie's friend Lynn on April 10th, 2010 at 10:07 am #

God please continue to bless this darling family.

It is good to hear that the surgeons aren’t rushing willy-nilly into surgery. I think this means there are humble surgeons on staff who aren’t ego-driven. Blessings and rest to you all!

The Morgans on April 10th, 2010 at 10:23 am #

You all have continue to be in our prayers through these years. Ella’s name is a constant in our conversations about Arissa’s condition. I tell people about her as yet another example of the miracles the Lord can perform. Every time I see her pictures and see her little smile there is no denying that she is such a special gift that the Lord has given you. It’s something I don’t even consciously think about but something I can feel in my heart. Please give Ella our love and let her know that we are with her (and you both) in prayer.

Joel Snyder on April 10th, 2010 at 10:37 am #

I am praying and waiting for good news.I will be home all day until I go to work at 11 p.m. Love, Dad!!!!

Steve and Joan on April 10th, 2010 at 11:01 am #

The West family is on our church prayer chain….Thank you Lord for this very precious and special child and her wonderful parents. Only you know the needs of each one and only you know the talents and expertise of the doctors and nurses. Please guide their hearts, hands and expertise to guide their steps in caring for dearest Ella. We thank you Father for your love, care and guidance. Amen. Steve and Joan

Amber Riley on April 10th, 2010 at 12:44 pm #

Praying for you and your sweet baby girl.

Tammy on April 10th, 2010 at 12:54 pm #

Hi Josh & Tina,
I havent’ looked at the website for awhile, but did today? The lord does touch our hand even on the computer. I live in San Clemente and am very, very familiar with CHOC both in Mission Viejo and the one I am assuming Ella is at in Orange. This has to be the most scary time for all of you…..the doctors at CHOC are excellent. PLEASE feel free to email me if you need any thing while you are here. My home is open to you, and any resources I may have (I work in the medical field here) I will gladly utilize if I can be of any help in that area (what it might be you never know). You are all in my prayers. Again, please feel free to contact me if you need anything while you are here.
Tammy McCarthy

Rusty Rich on April 10th, 2010 at 1:26 pm #

Hang in there guys. We’re praying for you and The Bun.

Rusty, Liz, Par, and Jack

Lesli Richards on April 10th, 2010 at 1:28 pm #

oh praying here… I can only imagine what you both must be going through right now. We love you and are praying for you. We are meeting with some friends from church this evening and will all pray for you then too.

Nancy Costas on April 10th, 2010 at 1:43 pm #

Josh, Tina & Ella you are all in our prayers. We pray that you Josh & Tina will remain strong emotionally an be there for each other for comfort. And Ella we pray that your little body remains strong physically, and you know that your mommy & daddy love you so much. Please lord watch over all of them and the doctors while little Ella has to go through another very difficult surgery.

Lots of love and prayers,

Lyle, Nancy & Amaya

Krista Chiefa on April 10th, 2010 at 2:08 pm #

Praying for Ella…..

Lee Ann on April 10th, 2010 at 2:11 pm #

I am praying for your precious little girl. She has touched my heart so much.

Kim on April 10th, 2010 at 2:23 pm #

Praying for Ella. God has great things in store for such a string child.

Kim on April 10th, 2010 at 2:24 pm #

Praying for Ella. God has great things in store for such a strong child and great parents.

Eve Johnson on April 10th, 2010 at 3:01 pm #

I’m before the throne of grace praying for Ella. Bless them, oh Lord.

Williamsburg on April 10th, 2010 at 3:16 pm #

You are far away in miles but in the center of our hearts in love. Praying. XOXOXO

Marla on April 10th, 2010 at 3:18 pm #

I am praying right now for Ella, I think she is in surgery at this very moment. Please God take care of our little Ella.

Michelle L on April 10th, 2010 at 3:52 pm #

Josh, Tina & Ella- I’m praying for all of you.

Rainey Family on April 10th, 2010 at 4:09 pm #

Praying as Ella is in surgery… big hugs to you guys.

Eileen on April 10th, 2010 at 5:21 pm #

Praying this eases her pain.

Jim and Char Snyder-Jordan on April 10th, 2010 at 5:29 pm #

We continue to pray for your precious little girl. We can only guess at the trauma and hurt you feel. We know you love the Lord and can find comfort from him in whatever circumstances occur. We are here.

Tricia McDaris on April 10th, 2010 at 5:48 pm #

Our prayers are with you. I may have missed it, but do you know what is causing the obstruction? Is it a malrotation?

Pls email me if you need anything… I can wash clothes for you or bring food or something…

~Tricia McDaris
Cadenne’s mom (fellow CDH’er)

kariabi at earthlink dot net

Terri Trainer on April 10th, 2010 at 7:44 pm #

loving you across the miles. Hang in there.

Dana and Lauren on April 10th, 2010 at 8:00 pm #

Lauren and I are praying for you two and little Ella. I can’t imagine.

Jan Costas on April 10th, 2010 at 8:09 pm #

Thank you, Lord, for being with Ella and the doctors and your mom and dad. We pray now that you can rest and allow your body to heal. Thank you , Lord, for holding Ella close. Amen.

Tracy on April 10th, 2010 at 8:31 pm #

so sorry to hear of this turn of events, but so thankful the right decisions seem to have made! May you get rest as Ella heals..:0)

katie on April 10th, 2010 at 8:39 pm #

Am praying for you beautifull girl have followed your story since you was a newborn baby.
also sending big hugs hugs to your parents
get well soon baby girl
katie (Australia)

Keile on April 10th, 2010 at 8:45 pm #

Josh, Tina and Ella, I am so sorry that you are going through this and so far away from home. It sounds like you are getting good care. I am thinking about all of you and praying for a good recovery. Hugs from one of your TCH nurses. Keile

Jose on April 10th, 2010 at 8:57 pm #

Praying fervently for Ella as well for her mom, dad, and rest of the family.

Jim and Char Snyder-Jordan on April 10th, 2010 at 9:26 pm #

Thank You so very much for the update. Love, J & C

Pat Hadden on April 10th, 2010 at 10:17 pm #

Hope you all are getting some rest. We’re sending lots of love. Bob and Pat

sherry martinez on April 10th, 2010 at 10:28 pm #

tina and josh so sorry it is so tough to see her like that. i will pray for you all as everyone needs strength. hugs baby cayden and sherry

Stefanie on April 10th, 2010 at 10:49 pm #

I’ve been following Ella’s blog soon after she was born and praying for her. I never thought you’d be a 15 minute drive from my house at the hospital. I’ll be praying for all of you.

Tricia McDaris on April 10th, 2010 at 11:07 pm #

Praise the Lord for his loving protection. I’m so glad that He made it so clear what had to happen. Poor little sweetie. We’ll continue to pray!

Lisa Correia on April 10th, 2010 at 11:46 pm #

Hi Guys,
We are praying for you guys back here in Denver. Your little girl is one tough cookie and I know she will continue to be through this recovery!! Praying for rest and peace for the entire West family!!!

julie kirk on April 11th, 2010 at 2:23 am #

Ella is such a fighter….She has such a ministry…I love you Ella. Josh and Tina, you are amazing parents and we are praying for you and your sweet girl…Please God, bless the West family with rest and a speedy recovery.

Amber Riley on April 11th, 2010 at 7:52 am #

Praying for that baby girl!

The Williams on April 11th, 2010 at 11:24 am #

Oh precious Ella… God has a plan for you all and it will Glorify him in ways that we can not even imagine. Love you all and will continue to lift all of you in prayer.

Aunt Ginny on April 12th, 2010 at 5:17 am #

Now Ella and I have matching scars! I had an obstruction due to scar tissue in my abdomen in 2002. The three of you are in my prayers.

Loren Lizotte on April 12th, 2010 at 6:18 am #

I’m praying for your little girl.

Karissa Benoit on April 15th, 2010 at 8:43 pm #

I was just thinking about you all today and wondering how your trip was going. I am so sorry you are having to go through all of this…prayers every day for the Bun.

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