Posted (Tina) in All Posts on April-11-2010

Ella had a fever last night, but it finally broke early this morning. As her mom, I stayed up pretty much all night to oversee the management of her care. Right off the top, I will say that we have been impressed with the staff at CHOC. They are doing a good job of taking their expertise and listening to us as her parents that know Ella, to come up with a plan.

Last night was the first night post surgery with the night crew and people that don’t have Ella experience. We did our best to warn them about her sensitivity to fluids and that they may want to consider giving diuretic in the OR or shortly thereafter to maintain her fluid status. The surgical team is worried and does not want to give diuretic because they need to make sure that her intravascular system is not too dry. Yet, we know that if you go too long and let her get too wet, you will have lots of other issues to deal with besides her surgery recovery.

It has only been about 20 hours since surgery and they have started to learn to listen to her parents and the Denver docs input. Overnight, the docs were a bit too aggressive in trying to wean her and give her fluids. I was suspect, but wanted to let them get a feel for her and her responses. I did put my foot down when the overnight doc wanted to cease her nitric oxide. Since we were admitted, they stopped giving her sildenafil which she normally takes to control her pulmonary hypertension (they didn’t want to put anything in her guts and sildenafil is not available via IV). So, they opted to manage her pulmonary hypertension with the nitric oxide. Last night, the doc wanted to cease the nitric oxide because “she looked good”. I was adamant and won that battle.

Her urine output has been low. This is not surprising because she usually requires diuretic every day to keep her dry. At this point, they had not given her any diuretic. Like they would treat a normal case, they suspected that she was not peeing because she was too dry. I highly doubted that she was too dry, but wanted to give them the freedom to manage her. So, they gave her two boluses of fluid to try and encourage urine output. As I expected, no true urine output. After advocating, they gave a half dose of lasix via IV (which Ella usually likes), and she gave out 300ccs of urine! This was before they took another chest xray. Then at 5:30am, they took another chest xray. Josh and I both took a look along with the docs – I think it worried them a bit. She is very wet.

This was their first introduction to Ella and her fluid sensitivities. I called her pulmonologist in Denver, who is amazing and always makes himself available, and he gave his cell phone so that the docs at CHOC could consult with him on her fluid sensitivity and the best plan for management if needed. But before I gave them the number, the new doc in charge for the day in the PICU was already putting the pieces together which was impressive. She increased her nitric oxide, increased the ventilator settings (which had been weaned with the overnight crew), increased orders for sedation, and ordered a full dose of diuretic once every 6 hours. She mentioned a lasix IV drip. We explained that Ella tends to respond to bolus lasix better (hitting her kidneys all at once in short boluses versus a drip gives more urine output). She took in our input and changed the order which is so appreciated.

The head of cardilogy came by for a visit. He has been incredibly valuable in managing the heart and lung issues pre-surgery, surgery and post-surgery. He is the one that decided to give her nitric oxide for her pulmonary hypertension, after consulting Ella’s Denver docs. This morning, he also added Milrinone, which is a medicine that they give a lot of times to kids with a weakened heart. It will simply supplement the nitric oxide and help her heart and lungs function together. Ella has not been on this before (to our knowledge), so it will be interesting to see her response.

They consulted hematology because they want to make sure that her blood clots enough for her new abdominal scar to heal but not so much that it impacts her SVC from clotting off. So, they noted from her earlier labs that her AT3 (Antithrombin 3) count was low. This is a protein in everyone’s blood that naturally helps with clotting. Hers was 116 before surgery. This morning, it was in the 60s. They want to see it maintain 100+ throughout today, so they gave her a dose and will monitor with labs. Tomorrow, the surgical team has given the “ok” to start Ella back on a heparin drip to make sure that the SVC is not impacted.

The surgeon did come by and confirm that yesterday went very well, but her intestines were so tense and dilated, it would not have been too much time before they burst. Initially, we were just told that they would not burst but that the tissue would just die. She reiterated that her intestines would have burst which would have been deadly for Ella. Wow, how the Lord takes care of and protects this little girl…it is truly amazing.

Today’s goal is a day of rest for Ella and reducing the amount of fluid in her lungs while her abdominal scar heals. Thanks for all the love and support.

p.s. As a side note (for those of you that don’t know), when we post an update for the first time each day, you will receive an email. But as we update throughout each day, you will not receive another email. So, you’ll need to just check back every so often to see if there has been another update.

Proverbs 3:5-6 (NIV)
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.

Steve and Joan on April 11th, 2010 at 12:42 pm #

Ella remains on our churh’s prayer chain and we requested prayers during services today. The Lord is holding her close. Prayers and hugs, Steve and Joan

Jim and Char Snyder-Jordan on April 11th, 2010 at 12:45 pm #

We are so pleased that the hospital and the staff have been very aware of your incredible knowledge about Ella. We have had several instances with children at CHOC. All have been positive. How wonderful it is that you happened to be in the right spot for Ella. Thank you Lord. We will continue to pray for her reoovery. Love, Jim and Char

Williamsburg on April 11th, 2010 at 12:50 pm #

Glad for some good news – thanks for keeping us updated. Keeping you all in prayer. XOXOXO

Shayneh Starks on April 11th, 2010 at 12:59 pm #

What a very special little girl you have. She is a miracle child. Our family sends love your way.

Joel snyder on April 11th, 2010 at 1:47 pm #

Tina and Josh, What great news to hear that the care takers for Ella all seem to be on the same page both in Calif. and Denver. I am glad to see that they are listening to your advice. Thanks for the update and I enjoyed watching Lola at the day care. Love you guys and continue to pray for Ella. DAD!!!!

Eve Johnson on April 11th, 2010 at 1:57 pm #

Your knowledge is amazing. Your posts are a blessing. Lord, continue to watch over Ella and her family, and to guide the medical staffs who are dedicated to her care.

Dana and Lauren on April 11th, 2010 at 2:00 pm #


Jan Costas on April 11th, 2010 at 2:31 pm #

It sounds like the doctors there have been very receptive, but it is so good that you have been able to monitor and assist. I pray that you can rest, and that little Ella’s body can heal.

Kelsey and Ben on April 11th, 2010 at 4:36 pm #

I just wanted to let you know that we are all praying for you guys here in Florida and I hope Ella is feeling better soon!

Merrilee Batchelor on April 11th, 2010 at 4:49 pm #

All of my love and prayers for
you to find miracles while you are
here in California at Childrens Hosptial.
You will be sent to my prayer pals.
Love and prayers to you and Josh to
get through this also.
Merrilee in Temecula

Tammy on April 11th, 2010 at 4:55 pm #

Sweet girl, I am praying for you! The lord is awsome and will keep Ella wrapped in his arms!
Again, please do not hesitate to email me if I can help in any way.
Blessings to you all,
San Clemente

Marla on April 11th, 2010 at 6:00 pm #

Tina, it sounds like they are taking good care of Ella and listening to you guys. God is with her and you. Love you guys.

Lisa Correia on April 11th, 2010 at 6:59 pm #

Have you two thought about doing something in the medical field?! it’s amazing the things you have learned about all the systems of the body in Ella’s short life so far!! I can see it now…Dr and Dr West!! Praying for great care and healing!!! And good sleep too for everyone!!

Becky Walsh on April 11th, 2010 at 7:55 pm #

I look forward to seeing Ella’s beautiful face again tomorrow. I was glad when we gave the spot dose of Lasix and I am even more glad that they decided to do the Q6. I hope it worked out well today! Get some sleep tonight! 🙂

jenn miller on April 11th, 2010 at 7:56 pm #

Your girl is an amazing miracle, I am humbled by her greatness. What. a. figher! Tina and Josh, I am sending you thoughts of strength and endurance and lots of love… Ella was sure sent to the right family, what a team you are!

Jill E G on April 11th, 2010 at 8:13 pm #

Many prayers for healing and rest for all of you.

Krista Chiefa on April 11th, 2010 at 8:48 pm #

Thinking and praying for Ella non stop. Looking forward to the next update. Much love to all of you.

kristin on April 11th, 2010 at 9:08 pm #

sending prayers, love, positive thoughts and hugs! may Ella’s healing be swift and strong! May you all have sweet sleep tonight.

Stefanie on April 11th, 2010 at 11:36 pm #

So thankful Ella is doing better. I will keep praying for healing and comfort. I hope you get some much needed sleep.

Our God is greater
Our God is stronger
God, You are higher than any other
Our God is healer, awesome in power
Our God, Our God

The Brittain Family on April 12th, 2010 at 4:53 am #

Hope your girl heals up and that her fever breaks. Praying.

Marge (A Friend in Indiana) on April 12th, 2010 at 5:50 am #

Praising the Lord for the success in Ella’s surgery and continuing to pray for her good progress and recovery. May all of you know His fullest blessings of peace, comfort and love through all of these trials…..He is an awesome God and you both are awesome parents. My love and an email hug to Ella.

Jennifer Harris on April 12th, 2010 at 8:49 am #

Our prayers are with you. GOD is awesome and will provide…Ella is a true inspiration!

Laura Blackwell on April 12th, 2010 at 11:17 am #

Praying still. We, too, have heard only good thing about CHOC.

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