Nov
22
    
Posted (Tina) in All Posts on November-22-2007

I had a chance to talk to Dr. Kays post-surgery last night.

He said that Ella did well through the procedure. First, they placed a central line. They tried through her right leg and it wasn’t working, so they switched to the left leg. From there, it was threaded sub-cutaneously up to her right side near her chest.

Normally, they place a central line through the neck area, but based on Ella’s history of having a collapsed superior vena cava and all the work she has had done in the chest region, they wanted to avoid that area. Also, since the surgical repair was on the left side, they threaded it over to her right side to remain out of the way.

Dr. Kays hopes to use the central line as much as they need to over the next several days. It has risk of infection just like any lines they place in Ella, so he does not want to see it in there any longer than 2 weeks.

The nissen surgery went well. Since Dr. Kays could not find a piece of paper, he began drawing a visual of the procedure on his scrubs! (Here is a great page that I found if you want to read more about the overall reflux issue, nissen procedure and g-tube). They took the upper section of her stomach and tied it around the lower part of her esophagus. This creates a drawstring-like effect. When Ella’s stomach becomes full, it will tighten and not allow for reflux. Also, he noted that she now has a “cute button” (he was referring to her g-tube).

If you remember from Ella’s repair surgery, her appendix was relocated to her left side beneath her tummy. Apparently, it is common to remove the appendix during a nissen procedure. It is not something that they look for or search for, but when it is apparent and seems like it might provide future complications, they remove it. So, just like her parents, Ella no longer has her appendix!

Dr. Kays was able to remove the gortex patch that lined Ella’s abdominal muscles (note: this is NOT her diaphragm gortex patch. Ella’s tummy was going to be too tight when he moved all her organs back into her belly during the repair surgery, so he had to line her abdominal muscles with an additional gortex patch when he closed. Since she is bigger, he was able to remove that extra patch). That was a positive. He did note that her liver had adhered to the patch slightly, but he was able to safely pull it away.

Ella will be off of food for 3 days (yep, no food for her first Thanksgiving). The first time they will try food through the g-tube will be Saturday. From there, they will give small amounts and build her back-up to full feeds through the g-tube.

He ordered for Ella to be given steroids 2x per day for the next 5 days. This should help her healing overall, but especially for her lungs to gain strength.

She was given a one-time dose of versed (sedation) yesterday for the surgical procedure as well as an increased amount of fentanyl (pain meds). The fentanyl was bumped slightly to help with her healing over the next several days. Once she has stabilized, they will begin to slowly wean it.

Since she was sedated last night, he bumped the ventilator to 40 breaths per minute at 50% oxygen.

The plan is to get another chest x-ray on Friday and see how her lungs have progressed. As soon as possible, he wants to extubate her and put her back on CPAP.

Dr. Kays did mention that we are not sure how CPAP and the nissen procedure will work together. Most babies have the nissen procedure when their lungs are in a better state and they do not require CPAP. So he warned that we are going into a bit of uncharted territory. The potential side effect is that since the CPAP is blowing continuous pressure into her lungs, that part of the air can also go into her tummy. Now with the nissen procedure complete, she will not be able to get rid of the air as easily. This might cause her additional discomfort.

Also with the nissen, he mentioned that Ella might do something called “retching”. If her belly gets too full, her body might try to spit up, but she will not be able to. Again, just another side effect of the procedure. As we discussed before though, the benefit is no heartburn/reflux symptoms for Ella as well as no aspirating into her lungs!

We are hopeful that this surgery not only solved her reflux issue, but will play a big part in helping her lungs to get stronger. Dr. Kays thinks that the reflux was contributing to the issues she has had with her lungs recently.

We pray that this is the last major surgery for Ella. She has been through so much already in her short life. Please pray that her body will heal well and that when they begin to feed her via the g-tube on Saturday, she will tolerate it. Also, please pray for good chest x-rays over the next few days. Already it has been nice to have her off CPAP because her nose is getting a much needed break. However, we want her to get strong enough to move to the next step.

Thanks for all the love and support for Ella and her roommates. On this day of Thanksgiving, we are thankful for these little ones. They are truly a gift from above.

Psalm 107
1 Give thanks to the LORD, for he is good;
his love endures forever.

Psalm 111
1 Praise the LORD.
I will extol the LORD with all my heart
in the council of the upright and in the assembly.

2 Great are the works of the LORD;
they are pondered by all who delight in them.

3 Glorious and majestic are his deeds,
and his righteousness endures forever.

4 He has caused his wonders to be remembered;
the LORD is gracious and compassionate.



Eusey Family on November 22nd, 2007 at 8:50 am #

Happy Turkey Day! We are so incredibly thankful for you sharing your journey with us and drawing us all closer to God. We are very thankful for our niece (Tina can attest that I have beeen asking for Ella for quite some time- ; )). We are so thankful for all the care she is receiving and the love and support of all her family and friends.

Happy Thanksgiving.
We love you.

RSMRCR

The Weir Family on November 22nd, 2007 at 8:55 am #

Happy Thanksgiving to your beautiful family!! We are tremendously thankful for God’s faithfulness in this whole process. He is truly gracious and compassionate. May God bless your holiday with supernatural peace and healing.

Much love,
The Weirs

Julie Kirk -Saudi Arabia on November 22nd, 2007 at 9:15 am #

Happy Thanksgiving and we continue praying for a happy healthy girl. She is so sweet

King Family on November 22nd, 2007 at 9:29 am #

Happy Thanksgiving. We join with you in thanking God for Ella Renae and your family’s testimony to how great he is. We are continuing to pray for all of you and wish you a day of peace and joy. Take care, friends. We love you very much.

Kevin and Dana on November 22nd, 2007 at 9:44 am #

Happy Thanksgiving West family!! We are so thankful to have the three of you in our lives. Sending tons of Prayers, hugs, and kisses your way. Ms. Ella bun is on her way to recovery.
We love and miss you….

lisa on November 22nd, 2007 at 10:50 am #

Happy Thanksgiving! I’ve been reading your blog for a while…what a roller coaster your family has been on.

I’m a pediatric nurse and have many baby patients w/ g-tubes….an easy way to get rid of extra air in Ella’s belly is to simply vent the g-tube! You can do it every so often, just attach a syringe w/out the plunger and the air will escape through it. It’s easier than burping!

Best wishes to you, and lots of prayers and hugs for your beautiful girl!

The Lizottee Family on November 22nd, 2007 at 10:57 am #

Happy Thanksgiving! Josh Tina and Ella. We will pray for ella to have a speedy recovery… Besides left over turkey is always better.
Lots of hugs and kisses!

Roberts Family on November 22nd, 2007 at 11:11 am #

Happy Thanksgiving and what a blessed day it will be for you! I will keep Ella in my prayers today.

Laura Marold on November 22nd, 2007 at 11:22 am #

What a lot for such a little ellagatorbinkybun to go through!!!Hopefully, this will be the answer to so many, many prayers. I also have a very important person in the hospital today so I feel such sympathy for you guys. Be strong!!! Remember, she’s a little fighter!!! Lots of love to you, Laura M.

Dottie Hubbell (from Saudi Arabia) on November 22nd, 2007 at 12:32 pm #

Happy Thanksgiving from all your praying friends in Saudi! Ella is a precious gift from God. Lord, I pray for Ella to be strengthened in body, mind, and spirit in The Lord’s Mighty power. May she be annointed from the top of her head to the soles of her feet with the blessings of God’s healing upon her. May the Lord uphold you, Tina and Josh, with His Love, Peace, Joy, and Hope! May it be comforting to know you are in our thoughts and prayers without ceasing! Love In Christ, HUGs, and Prayers to You all!

Joel Snyder on November 22nd, 2007 at 12:48 pm #

Ella, Happy Thanksgiving I am sorry you can’t have dinner today but we will fix that next year. I am glad that your operation went well and I am praying that you can finally start the steps forward and start to feel better.I am thankful that I have you and your Mom and Dad in my life. Taco and Manny said to say hello and hurry home when you can so they can play with you. I will be praying for you and Par and Jonathan and will check on you later tonight. Love, Grandpa!!!!!!!!!!!!!!!!!!!!

Tammy on November 22nd, 2007 at 1:46 pm #

Happy first turkey day sweet Ella. Gobble, Gobble!
I pray for your quick recovery, and rest for a weary mom and dad. Prays also to Par and Jonathan, and families.
God Bless

Char Snyder Jordan on November 22nd, 2007 at 2:38 pm #

Happy Thanksgiving Little West Family,
It is so good to see pictures of Ella and be reassured from everyone that Ella is a fighter and is on the mend. We shall wait for next Thanksgiving and perhaps you may even get to taste a bit of the turkey. We love you all, we are grateful for the success that will happen. All our love on this wonderful holiday. Jim and Char

Brantley Family on November 22nd, 2007 at 2:53 pm #

Happy Thanksgiving from the Brantleys. Glad to see that Ella’s procedure went well. We are praying for Ella’s recovery and our hearts go out to you this day. Lots of Love and Prayers!

Clay, Julie, and Jordan

Williamsburg on November 22nd, 2007 at 5:59 pm #

How good it is to stop regularly and remember how very much we have to be grateful for, including the precious West family and Dr. Kays and staff, and the beauty of Ella Renae’s life. I’m also personally thankful for a Father who allows me my tears in the midst of the gratitude and is okay with our petitions for complete healing for Ella so we can have you back home with us again. I’m so glad the surgery went well; we continue to be on our knees as well for swift forward progress and an end to this difficult phase of the journey. Hug each other and kiss sweet Ella for us. We love you bunches. XOXOXO

Chambers Family on November 22nd, 2007 at 8:13 pm #

She is one tough little pumpkin pie. Happy Thanksgiving Ya’ll

Love, Dana

The Laz Fam on November 22nd, 2007 at 8:51 pm #

Happy Thanksgiving, dear friends. Find joy in being in the center of His will, and peace in His plan for the future. He loves you all, very much.
Love, KTJB

John & Estela Williams on November 22nd, 2007 at 9:47 pm #

Feliz Dia de Gracias… Happy Thanksgiving Ella, Tina and Josh. We are amazed by your strength Ella and hope that your little body heals quickly. Love you guys and God Bless.

Angie on November 22nd, 2007 at 10:06 pm #

You guys are in my thoughts and prayers. I pray Ella gets over this “bump in the road” quickly so she can move forward again. She’s been doing so good! Hope you guys are feeling better too. See you soon. ~Angie

Char Snyder Jordan on November 23rd, 2007 at 10:42 am #

Justs checking on the Indian Princess before Jim and I head out to work at the condo. We missed you folks at Ginny’s last night. It was the quietest Thanksgiving that Ginny and I ever remember. Just Matt,Melinda,Ginny,Jim and me. We all make sure to check on Ella everyday, mostly two times to see how things are. Ginny,Matt and Melinda expressed their heartfelt concern and love for you and Ella. They are struck by the dimensions of the task that you,Tina, Josh and Babycakes have undertaken. We are all pulling and praying for a wonderful result. Thanksgiving Greetings to everyone in Gainsville.LOL Aunt Char and Jim

Roxie (Adrienne's friend) on November 23rd, 2007 at 4:51 pm #

We are so blessed to have Ella in our lives. Love, Roxie

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