Posted (Tina) in All Posts on April-14-2010

Who would have thought that 15 years from saying “I do” would land you @ CHOC (when you normally live in Colorado) with a beautiful miracle girl that God has allowed you to borrow for a time?

Today is our 15 year wedding anniversary. And it has been such a big day for Ella too.

Starting at shift change last night, Ella was too awake. They kept increasing the Propofol from 75 to 85, then 95, then 100. The 100 mics per kilo is the max amount for her weight. All of this over 30 minutes. Then, we tried a dose of Benadryl which has worked successfully so far. We waited twenty minutes, she was still awake. They called in the doc to double the fentanyl drip. Nothing was working to make Ella sedated enough. Even though they were pumping lots of drugs into her system, she was still fighting it. Under my breath, I’m thinking that is one of the reasons Ella has made it so far: she’s such a fighter.

Finally, they called the doc in again and he recommended a one time dose of Vecuronium (Norcuron) to deal with Ella in this acute state and get us through the night. Vecuronium is used as an adjunct to general anesthesia, to facilitate intubation and to provide muscle relaxation during surgery or mechanical ventilation. Although Vecuronium is often thought of as a muscle relaxant, it may be more accurate to classify it as a paralyzing agent. I was not real happy about giving her yet another drug, especially a paralytic agent as she is getting closer to be extubated, but I felt we were out of options.

Giving a paralytic agent reminded me of the NICU days. Not often, but more often that we wanted on some days, using a paralytic agent was the only way to manage Ella because she would fight things so much. The fact that she is continuing to build a tolerance to the sedation and waking up tells me that we need to do everything we can to get her off the vent.

While she was sedated and cooperating, she looked stable for a few hours so they drew a blood gas and then weaned the vent settings a little bit more to 14 breaths per minute around 3am. She has another blood gas at 6am and a chest xray. Her overall saturations, heart rate and blood gas will determine if she can take the next steps.

As I am every day and evening with the changes in staff, I was very specific with the nurse to wake me if there were any changes. About 4am, I awoke to beeps. They were suctioning her. I saw the nurse drawing up the Vecuronium in a vial getting ready to dispense again. I asked what was going on and was informed me that they were giving it again. With limited options in front of us, I may have opted for the same answer, but I would have liked to discuss with the doc on the downsides of giving this paralytic agent so close to her extubation. In other words, are we better to try more fentanyl or even give a bolus of versed? When was the next dose of Benadryl? Would that have been a better option? The Vecuronium held her for 4 hours, so it was probably a good call. I just got enraged over the principal: I specifically asked to be woken up with any changes or decisions regarding her care and I was not.

I went out to the charge nurse to voice my displeasure and make sure that we have a great nurse scheduled for the day shift since it is a big one for Ella. Once I calmed down enough back in the room, I went back to the room and confessed to the nurses that I was not happy. We had a nice talk about it. During our conversation they let me know that when Ella was waking again, they consulted the doc and found out that Vecuronium was ordered as needed for every hour. They admitted that they were under the impression that it was a one dose treatment as well. But they told me that they did try a bolus of fentanyl before I woke up and she did not respond. Once again, we had a clear discussion about waking me if they felt that she needed it again or they were planning to do anything different than normal maintenance and letting her current drips run. Once I was worked up, it took me a long time to be able to go back to sleep.

This morning, it became pretty apparent that it was time to extubate. Once the docs briefly took a look at her chest xray, which looked better, and watched her clinically, they started the process. They stopped the Propofol and the fentanyl. They took a blood gas which didn’t look great and she wasn’t responding to CPAP via the vent, but we think it is because she did not know what was going on with the tube in her throat and wanted it out! So, it was only about a 15 minute process and finally extubation at 8:40am! Ella did great – they did not need to bag her or put a mask on her face – which surprised them. They just took a blood gas and now she is doing better off the ventilator than on it! Praise God!

Now, the only challenge is her itchy rash on her chest area. Since she is more alert, she is itching herself and it is driving her crazy! This confirms what we thought the entire time: that she was itchy even through the sedation. We gave her Benadryl about 30 minutes ago. If that doesn’t work, they’ll need to start something else.

Otherwise, Ella is doing great on the nasal cannula with nitric oxide and 2 liters of O2. We’ll update later on this same page (remember, you will not get an email)!

I read this passage in my devotional a couple of months ago and shared it on the blog. For some reason, I felt prompted to share it again today. It must mean that someone out there reading about Ella’s story needs to be reminded of His love and His ways.

This is my doing (1 Kings 12:24).

The disappointments of life are simply hidden appointments of love.

My child, I have a message for you today. Let me whisper it in your ear so any storm clouds that may arise will shine with glory, and the rough places you may have to walk will be made smooth. It is only four words, but let them sink into your inner being, and use them as a pillow to rest your weary head. “This is my doing”.

Have you ever realized that whatever concerns you concerns me too? “For whatever touches you touches the apple of my eye” (Zech 2:8). “You are precious in my sight” (Isaiah 43:4). Therefore it is my special delight to teach you.

I want you to learn that when temptations attack you, and the enemy comes in “like a pent-up flood” (Isaiah 59:19), that “This is my doing” and that your weakness needs My strength, and your safety lies in letting Me fight for you.

Are you in difficult circumstances, surrounded by people who do not understand you, never ask your opinion, and always push you aside? “This is my doing”. I am the God of circumstances. You did not come to this place by accident – you are exactly where I meant for you to be.

Have you not asked Me to make you humble? Then see that I have placed you in the perfect school where this lesson is taught. Your circumstances and the people around you are only being used to accomplish My will.

Are you having problems with money, finding it hard to make ends meet? “This is my doing”, for I am the One who keeps your finances, and I want you to learn to depend upon Me. My supply is limitless and I “will meet all your needs” (Phil 4:19). I want to prove My promises so no one may say, “You did not trust in the LORD your God” (Deut 1:32).

Are you experiencing a time of sorrow? “This is my doing”. I am a “man of sorrows, and familiar with suffering” (Isaiah 53:3). I have allowed your earthly comforters to fail you, so that by turning to Me you may receive “eternal encouragement and good hope” (2 Thessalonians 2:16).

Have you longed to do some great work for Me but instead have been set aside on a bed of sickness and pain? “This is my doing”. You were so busy I could not get your attention, and I wanted to teach you some of My deepest truths. “They also serve who only stand and wait”. In fact, some of My greatest workers are those physically unable to serve, but who have learned to wield the powerful weapon of prayer.

Today I place a cup of holy oil in your hands. Use it freely, My child. Anoint it with every new circumstance, every word that hurts you, every interruption that makes you impatient, and every weakness you have. The pain will leave as soon as you learn to see Me in all things.

UPDATE 11:30 AM – By Josh
Well, we’re almost three hours after extubation and other than some major itchiness and a few withdrawal symptoms, Ella’s on the right path. We’re about to give her some Atarax to help with the itchiness and calm her a bit. Really though, we are all feeling relief. I think the pics below tell the story better than any words.

UPDATE 2:45 PM – By Josh
Ella is having some pretty strong withdrawal symptoms from the narcotics she’s been on for the last 4 days. She just scored an 11 on the Finnegan scale. For this reason they’re are going to put her on a low dose of Methadone. Hopefully this will ease her jitters and stop the waves of retching. We still get smiles, but we want the kiddo to be comfortable. Waiting on the dose from the pharmacy so we’ll see.

UPDATE 7:30 PM – By Tina
The initial dose of Methadone did not seem to have much effect. About an hour later, we had the doc examine her again. He went ahead and increased the dosage. The second time, she responded. We had about an hour of her still shaking a small amount, but not extreme. And she was very smiley, alert and responding like herself.

Around 7pm, she started acting agitated again. They just administered another dose of Methadone (which can be given every 6 hours) and I am waiting to see if it will calm her down again. Right now, she is resting in her bed and watching videos.

We are allowed to give the Atarax again. If she becomes agitated between now and the next dose of Methdone, we may try to see if that helps. It worked like magic the first time she took it! Plus, I do see her itching herself here and there and the red rash appears to becoming more prominent.

I’m having them order some aloe vera to put on her cheek and lips. When they extubated her this morning, they did not have orders to remove the NG tube initially. So, they retaped it to her face using a clear sticker. Her skin is so sensitive that when the nurse removed it later, it actually created little scabs on her face. Ouch!

We weighed Ella and she has lost 2.2 pounds since she was admitted last Thursday. We’re hoping that we can feed soon enough and start plumping her up again!

Thanks for all the prayer support. Ella did great today and we anticipate that she will progress forward well over the coming days. Please pray for sleep – for her and me – tonight in the PICU.

Heidi Ham on April 14th, 2010 at 10:19 am #

Love and prayers for you sweet Ella <3 Josh and Tina….be uplifting to each other….congratulations on your Anniversary!

Marge (A Friend in Indiana) on April 14th, 2010 at 10:28 am #

Happy Anniversary to you both! Baby Ella, keep getting better with each passing hour of the day. Be uplifted and comforted in His love and care.

Anne on April 14th, 2010 at 10:34 am #

Happy Anniversary guys! What better present than an extubation? YAY!

Kellie Myers on April 14th, 2010 at 10:34 am #

I haven’t posted many comments, because I just don’t know what to say. I’m so upset that sweet Ella has to go through all of this again! But, please know that I check the block several times a day and am constantly thinking of your family.
-Kellie (Carter’s mom)

Loren Lizotte on April 14th, 2010 at 10:39 am #

Happy Anniversary. We always keep Ella in our prayers. She is certainly something to behold.

The Brittain Family on April 14th, 2010 at 10:42 am #

It’s amazing to see how much she’s grown since her tiny little self. We’re glad she’s doing better and that God has provided yet another home away from home. Happy Anniversary!

Christe Mitchell on April 14th, 2010 at 11:17 am #

Prayin for Sweet Ella….. Happy Anniversary Josh & Tina : )

Krista Chiefa on April 14th, 2010 at 11:26 am #

Bun is such a fighter! So glad to hear she is doing better. 🙂
Happy Anniversary!

jenn miller on April 14th, 2010 at 11:28 am #

oooo, I LOVE seeing her in your arms again!!!! My heart stopped a little when I saw vec on the page, thank goodness you’re past it. What a fighter indeed, go Ella!!
Thinking of you!!

Joel snyder on April 14th, 2010 at 12:07 pm #

Ella, Grandpa just woke up and what a great gift to see you with that terrific smile on your face. I am so excited to see you doing so much better. Tina and Josh Happy Anniversary what a day!!!!!! Love,Grandpa!!!!!!

Michelle Herman on April 14th, 2010 at 12:13 pm #

So glad to see her smile again! what a nice anniversary present after such a difficult few days. Hoping that things continue to improve. 🙂

Jennifer Harris on April 14th, 2010 at 12:30 pm #

It is wonderful to see Ella smiling and she remains in our prayers. Thank you for sharing scriptures…GOD is with you:-)

Tara Hayes on April 14th, 2010 at 12:33 pm #

Wow, praising our Heavenly Father for the precious gift of Ella and her adorable smile! I prayed several times throughout my sleepless night last night for a miracle today. I am SO thankful to hear (and see!) such great progress today. She is so stinkin’ cute! Happy Anniversary – sweet girl didn’t want to miss the celebration of 15 years:)

Terri Trainer on April 14th, 2010 at 12:34 pm #

YEAH!!!! And happy anniversary!! We love you guys!

Auntie Shannon on April 14th, 2010 at 12:37 pm #

Yea Ella! I love the smile. You go girl. Tina and Josh, you two continue to amaze me and you are truly an inpiration to all of us. Your faith rocks!

Tammy on April 14th, 2010 at 12:52 pm #

What a welcome smile!!! It speaks volumes!!! How comforting to Ella now that you can cuddle her! She is a little tiger……..grrrrr. Fight on Ella T!!!!
Thank you also for printing ‘This is my doing”. I am always amazed at how the lord puts just the right thing(s) in our lives when we need them most. For me these words fit the problems of the day!!! Happy Anniversary, with the most precious gift of all!!!


Kelli Billman on April 14th, 2010 at 1:12 pm #

Oh so nice to see that smile!

Eve Johnson on April 14th, 2010 at 1:13 pm #

Such sweet tears to see Ella in your arms.

Teresa Reed on April 14th, 2010 at 1:36 pm #

Happy Anniversary! You two are a very special couple! Wishing Ella a quick recovery and I love to see that smile! Much Love, Teresa & Family

Alicia Martin on April 14th, 2010 at 1:41 pm #

Welcome back little one!!!

sherry martinez on April 14th, 2010 at 1:50 pm #

it is really nice to see her awake and alert. and happy anniversary hugs baby cayden and sherry

Nancy Costas on April 14th, 2010 at 2:28 pm #

Now that’s the girl we all love! So great to see that smile. Love and prayers all around!! Lyle, Nancy & Amaya Costas

Steve and Joan on April 14th, 2010 at 2:41 pm #

Happy Anniversary and Happy Ella. What a day. Prayers continue, Steve and Joan

Lee Ann on April 14th, 2010 at 3:10 pm #

Praying Ella can get through all of these complications!! Our God is so powerful, he can do it all!!

Dee Wallis on April 14th, 2010 at 3:12 pm #

Such a magnificent way to show your commitment to each other and your Lord: This precious lovely child that you share with the world. She has touched my heart today, and I thank you for that. Best Wishes, Dee Wallis

The Brittain Family on April 14th, 2010 at 3:57 pm #

I was going to mention Atarax–it’s what we use for severe hives/itchies when Benadryll isn’t enough. Hope it keeps her comfy. What a big day. Still praying.

Dana and Lauren on April 14th, 2010 at 6:10 pm #

Happy Anniversary! The best gift of all must of been to HOLD Ella in your arms!!!!!! Keep fighting Ella!

Tara Hayes on April 14th, 2010 at 7:19 pm #

Still praying for your family! Hope she’s doing a little better now since 2:45 update. Sweet dreams!

Jim and Char Snyder-Jordan on April 14th, 2010 at 8:30 pm #

There she is. Our fighter is back in the ring. Oh she is so beautiful. You are so strong and spiritually fed. We pray for you daily. We ask God to give you strength for Ella. God Bless you on your anniversary. We love you all.

Jasmine Vinson on April 14th, 2010 at 11:35 pm #

You don’t know me nor do I know you, but I am a close friend of Megan Sipprell. She shared your story with me and I was com pletly moved by your story and ur steadfastness to ur relationship with each other and with God! My husband is finishing his studies to be a pastor and I wanted u to know that you, your family and especially Ella will b n my prayers. I know that God already knows your pain and is with you. As he says in Psalm 139 God knows US COMPLETLY! Even to the number of hairs on your head *in Matthew 10:30 and Luke 12:7! So these prayers have Already been on his mind and he is already working on answering them. But don’t forget though he answers prayers……..they r not on our time but his and not always YES but sometimes NO.
I also wanted to share with u that I have been there both as the mother of the child (my son who is now 12 was born at 29wks was not expected to live the Dr told me that if he came out screaming his lungs would stick together and there would b nothing they could do as well as if he wasn’t screaming his lungs would have already stuck together and still they could do nothing little did they know he was a fighter and he came out screaming and slapped the Dr!) and as a nurse caring for those same children. Please believe me as I know u already do God has a plan and he is already working on it. Keep the faith and I will continue to follow Ellas story and keep u all in my prayers.

The Williams on April 15th, 2010 at 7:45 am #

This is my doing (1 Kings 12:24), this is such a blessing Tina and Josh… what an amazing scripture.. I might use it today! Thank you for continuing to keep us updated on our precious Ella… love you guys and please let me know if I can do anything out here for you!

julie kirk on April 15th, 2010 at 9:13 am #

One day Ella will tell you how much she appreciates everything that you two have done for her. All the love, all the tears. You guys are awesome and I am always in awe of your strength…
God Bless you three…

Merrilee Batchelor on April 15th, 2010 at 9:17 am #

The pictures tell of the Lord’s works.
Prayers continue for you and your
family at this time. The passage
is beautiful, and two months ago
who whould have known how much comfort
it now brings you again.
Get Well Ella,
Love and prayers,
Merrilee in Temecula

Jan Costas on April 15th, 2010 at 9:41 am #

So glad you are able to hold her now. Happy Anniversary!!

Ben Wilkoff on April 15th, 2010 at 8:41 pm #

Happy Anniversary Guys. Awesome work on 15 years and the miracle.

Karissa Benoit on April 15th, 2010 at 9:03 pm #

So great to see her beautiful, smiling face!

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