Posted (jooosh) in All Posts on October-4-2007

Called to check on our baby girl this morning, and found out that Andrea (one of our fav nurses) was taking care of her today.

Miss Ella bun had another good night. She was on her back until she was flipped over at 8:30am this morning. She tolerated the turn very well and didn’t fuss much at all. She settled right back down and fell back asleep for nurse Andrea.

Her gases at 4am looked good: pH=7.51, cO2=37, pO2=93

How excited can you get over urine? When your daughter ouputs 320ccs, it’s a good thing. That’s the most she’s put out in a 24hour period. Hopefully she’ll keep up this trend because it should help with her edema.

She also put out 70ccs of chest fluid. This is good because it give Ella relief from it building up in her chest, but we need this to stop all together. This is the fluid issue that has plagued us for weeks now, and we just need it to resolve.

We haven’t heard from Dr. Kays yet. We’re curious to hear what his thoughts are on her next steps.

Lord Jesus, we praise You for this little girl. You have blessed her with such strength. We continue to pray for healing in our precious child’s body. You know everything about her, because You created her. Ella is in your hands Lord. Amen.

Revelation 4:11
“You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being.”

UPDATE (3:30pm EST) by Tina: Nurse Andrea called to give us an update on Miss Ella. Her blood gas at noon was pH level of 7.38, cO2=49, cO2=152, which is good. She mentioned that Dr. Kays was at Ella’s bedside and handed the phone over to him.

Dr. Kays stated that her chest x-ray this morning looks better – – her lungs looked better! Also, he mentioned that the chest tubes output 70ccs yesterday and that they appear to be continuing to drain which is good.

This part we were not mentally prepared to hear: since her chest x-ray shows that her lungs were more expanded, he went ahead and scarred both of her chest cavities by inserting betadine through each chest tube. He felt it was the right timing; it was our best opportunity to use this technique. It will take 2-3 days for us to really assess whether the chest wall scarring really makes a difference in solving the fluid issue.

He mentioned that he is going to follow-up with radiology on the contrast x-ray of her SVC, but has not received any information so far. He thinks that her overall adema and puffiness is simply related to the fluid issue as a whole; not that anything has changed with the status of her SVC.

Also, he mentioned that Ella was having some funny movements around her mouth today. So, they increased her versed and phenobarbital doses. He is not sure if it was seizure activity, but it likely may have been. Until today, they had not increased her dosage of either of the anti-seizure meds, so it is likely that she has outgrown the dosages.

We were excited to think that maybe since she had gone this long, that she might not need the increased dosage of the anti-seizure meds or maybe not need them at all. I guess only time will truly tell.

Lord, we are trusting you with all the details.

Psalm 9:9-10
9 The LORD is a refuge for the oppressed,
a stronghold in times of trouble.

10 Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Loren L on October 4th, 2007 at 7:59 am #

Boxing gloves are back on! Still praying for a fighting chance.

Joel Snyder on October 4th, 2007 at 8:19 am #

Ella, Just got home from work and you look good but I must say I am more impressed with your stats. I hope you can keep up the good numbers and a comfortable day. I will check on you later today. Say hello to your Mom and Dad for me. Love, Grandpa!!!!!

Jessica Morgan on October 4th, 2007 at 9:14 am #

I had to laugh out loud at your comment on urine. At one point Joe and I both said, I have never been this excited about peepee before! We will be down for Arissa’s appointment on the 16th and definitely visiting the NICU to see our nurses, maybe we’ll be able to meet you and check in to see how you both are doing. We will continue to check on her and she is constantly on our minds and in our hearts throughout the day.

rachel on October 4th, 2007 at 9:50 am #

i know exactly how exciting urine output can be. Way to go Ella!!!! Keep it up. love the stats. those pictures look so familiar. we have some of miss ava that look just like that. Ella you are amazing and beautiful. You are a miracle baby! you have come so far, keep it up! love rachel & baby ava

John & Estela Williams on October 4th, 2007 at 10:03 am #

Praise the LORD…. it is wonderful news and she looks so cute with her boxing gloves on. It’s so appropriate as we all know how hard Ella is fighting for your life. God Bless

Joan Odell on October 4th, 2007 at 10:24 am #

Thank you Lord – she is so very precious – this is good news and many hearts are uplifted. Joy, Joy, Joy STeve and Joan

Char Snyder Jordan on October 4th, 2007 at 11:06 am #

Wow if I didn’t know better she is the cutest Pillsbury Dough Boy I have ever seen. What a precious bundle. Hopes and prayers for a good day. LOL Aunt Char and Jim

Laura Blackwell on October 4th, 2007 at 11:29 am #

I love the pictures and the verse right above the 2nd picture. Continued prayers for the fluid issue.

Jenny Talbott on October 4th, 2007 at 12:25 pm #

the sweet little m & m remains in my thoughts daily… as do her exceptionally strong momma and poppa…

The Brittain Family on October 4th, 2007 at 4:41 pm #

Wow, what a big afternoon. Whereas we don’t like to think of little Ella having to go through that procedure, we are thankful for her doctor knowing both that he has her best interest in mind and that he has many asking God to direct his steps! We take comfort in that, are thrilled that Ella is still doing well, and pray that she will do even better! A good chest x ray….really good news! Go team!

Joel Snyder on October 4th, 2007 at 5:07 pm #

Ella, Glad to wake up this afternoon and hear good news.I am praying that your latest procedure will help the fluid problem so that you can move on in the healing process. I will check on you later. Hugs and kisses–Grandpa!!!!!

Kristen on October 4th, 2007 at 5:58 pm #

Wow, that would have been hard news to hear without knowing it was going to take place. However, also, we have been praying Dr. K would have wisdom. . . I am thankful to have it behind us and at the right opportunity for Ella. What sweetness she is!! Just an idea. . . I know you read the posts, maybe you could read them to Ella? 🙂 What girl doesn’t appreciate a word of encouragement?

Dirrim family on October 4th, 2007 at 6:45 pm #

We just returned home from a children’s ministry meeting where we prayed for both of you and Ella. Your faith has been such an encouragement to me and my family. We continue to pray for your strength and peace.
Lord- Bless Ella with a good night. Give her rest and good fluid output. Use this latest procedure to heal her fluid problem. Bless Tina and Josh with a peaceful night sleep also. Resting in the fact that you are sovereign. I ask this in Christs name.
The Dirrim family

Kelli Billman on October 4th, 2007 at 8:13 pm #

Tell me we don’t need to change the words of the song to GO ELLA GO PEE PEE! 🙂
Have a great night, glad to hear the stats are looking good. Prayers for a restful night and even better stats tomorrow!

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