Posted (Tina) in All Posts on September-19-2007

Ella turned down the wrong path today.

If you read the last post (yes, that was me writing in pirate talk and not Josh, although he is wacky too), then you already know that her chest x-ray was not good this morning. Her chest tubes had drained only 38 ccs total (11 left and 27 right) plus she had a poor blood gas at 11:30am (cO2=70, pO2=66).

So around 2pm, Dr. Kays replaced her right chest tube, in the hopes of getting more fluid reduction. Her drop in stats and overall stability is all related to the accumulation of fluid in her chest cavity.

Since the chest tube replacement, there has only been a total of 13ccs (8 left and 5 right). This is not much and does not indicate forward progress.

We ran into Dr. Kays around 8pm. He noted that the right chest tube replacement earlier did not gain us much, so he is getting closer to ordering a CT scan to assess what is happening with the fluid in her chest. He thinks that her body might be building protective pockets around the chest tubes and preventing the fluid from draining.

The CT scan will show this type of detail. But, it is a big deal to get a CT scan completed because they have to transport her to another area of the hospital. This is the main reason that Dr. Kays has held off on ordering the CT scan – – it is a production.

He did mention that he is pleased with how she is handling the food and he does not see that it is increasing her fluids or contributing to the fluid issue. Also, he increased Lasix to 4x per day (this helps with her overall urine output).

Once Dr. Kays left, they ran a blood gas at 9pm. This proved that she is still accumulating fluid and not feeling well (cO2=79, pO2=79). He was paged with the information and gave verbal orders to increase the ventilation and take another blood gas in an hour.

When we first went to Ella’s bedside tonight, one thing we noticed: the socks had been removed from her hands. She does tend to pull on the lines, plus her nails are very long and she has been known to scratch her face. So we asked the nurse to make sure and place the socks back on her hands at some point.

We just called and her 10:15pm blood gas was about the same (cO2=71, pO2=69), not too much improvement. No other changes for tonight.

Although the nurse did mention that somehow Ella got ahold of the line in her neck and pulled the dressing away. That is a bit scary.

Dr. Kays has been talking about how he wants to remove that neck line because it has been there a long time and carries a high risk of infection (this is the same place on her neck where the cannulas were inserted for ECMO, so it has been there for 8 weeks).

As a precautionary measure, the nurse ordered a chest x-ray to make sure that the line is still intact and nothing else occurred. Those socks have been put back on her hands. Maybe a note will go down on her chart to ensure that those socks remain intact!

Our hearts are heavy tonight. We are feeling a bit weary. We know that God is with us, He is present with us, He is sovereign and in control, all in His timing. Yet, we are feeling a bit discouraged since we cannot seem to overcome this fluid issue.

Now that the chest tubes are not appearing to make much impact, Dr. Kays already hinted that we might need to consider surgical intervention.

Please continue to pray for Ella as well as wisdom for Dr. Kays. We want to see the chest fluid issue resolve. We really are not excited about the idea of having to surgically go into her chest to try and resolve this issue, when Dr. Kays is not confident that he can fix it on his first try.

Also, please pray for us as Ella’s parents. We certainly want to be open to what the Lord wants us to learn through this experience. We want to be obedient to Him. In other words, we don’t want to be road blocks. Please pray that we would hear His voice during this trying time.

Psalm 61:2
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.

Eusey Family on September 19th, 2007 at 8:38 pm #

Oh you guys, our hearts ache to know that Sweet Ella isn’t doing great tonight. Maybe the Lord has better things planned for her tomorrow. She looks so good that she has to start feeling better and her stats must improve. We will pray hard tonight for these things. We will also pray for her sweet parents that they may gain more wisdom to understand and more patience as Sweet Ella continues along the path of recovery.

Love you guys!


Kristen on September 19th, 2007 at 8:46 pm #

Heavy hearts here in Colorado tonight reading this update. *sigh* We continue to ask the Lord for Ella’s total healing and pray that from her womb will be another generation that will rise up and praise Him! He is the God of miracles! And Ella certainly is one of His best!

Char Snyder Jordan on September 19th, 2007 at 9:13 pm #

I am so very sorry this is so very hard for you. I am heartbroken for our little princess. I love you and pray for you and all that is happening may be used for good. LOL Aunt Char

Melissa Morris on September 19th, 2007 at 10:04 pm #

Oh my gosh you guys… my heart is aching as I know yours is. Keep the faith!! God is bigger than all of this. I will be praying for resolution of the fluid issue and healing for Ella. She really looks great. I’m sorry that she isn’t feeling as good as she looks. You all hang in there. I hope you have a better day tomorrow.
Father God, please shower your peace on this family tonight. Continue to heal Ella’s body and resolve the fluid issue. Guide and direct Josh and Tina down the road that you are taking them. Make your way clear to them. Help them to hear your voice in the middle of everything else that is going on around them.
Lord, be with Dr. Kays… give him wisdom and help him to know what steps need to be taken.
Give them all rest tonight so that they may awaken in the morning with renewed strength.
We are asking for a miracle in Ella’s body. May your will be done in and through this family.
I really am sorry to hear this news. You guys are awesome parents. You already have the parent instincts – follow them and follow where the Lord leads you. Be still and know that He is God!!
We need a u-turn. Hang in there Ella… we know you can. Rest in His arms tonight and find strength to carry you through.
Love, Melissa

Pat Hadden on September 19th, 2007 at 10:35 pm #

We’re thinking of you as always.
And sending all three of you much love.
Pat & Bob

Joel Snyder on September 20th, 2007 at 4:35 am #

Ella, I am sorry to hear about your rough day. Grandpa is praying that things will turn in your direction with the fluid issue. Josh and Tina I am praying for you also keep the faith. Love, Grandpa!!!!!!!!!!

The Brittain Family on September 20th, 2007 at 5:21 am #

We keep praying. Any possibility that Ella could have a consult with a surgeon that specializes in Thoracic Duct overproduction/damage? It seems to be such a specialized field, similar to CDH. We really, really wanted this to resolve on it’s own, but Ella’s Heavenly Father knows what she needs, and if He’s showing us she needs special intervention, we will keep on our knees asking for her deliverance! Praying for wisdom for you AND the staff there that is so dedicated to her care. Praying for strength for Ella, for freedom from infection and for comfort. We pray for the CT scan and also for the many decisions that are ahead of you today. May His arms hold all of you today.

tamara tessmer on September 20th, 2007 at 7:06 am #

Please know we are praying for Ella and for the both of you. There is a song by Chris Tomlin called “How can I keep from singing”. In it he says “though the storms may come, I am holding on, to the ROCK I cling. Keep on clinging!! He will see us all through. Sweet Ella keep fighting. I pray that today will be a day filled with hope and peace. Father please guide everyone in the way you want them to go. Give wisdom and clarity to Dr. Kays to resolve Ellas fluid issue. Surround Tina and Josh with your holy spirit and speak to them clearly. Thay are such wonderful parents Father, and I ask that you would continue to bless them and strenghten them as they walk this road you have set before them. In Jesus name- Amen
Love you guys

Joan Odell on September 20th, 2007 at 8:00 am #

Dear Hearts – the road certainly has many bends in it. We are sorry about this recent turn. We prayed for her last night and this morning, not knowing about her day yesterday. Please, Lord, take care of this issue without chest surgery. Place your healing hands wherever they need to be to resolve the fluid problem and strengthen her to continue on a positive journey. We trust implicity that You are with her, Josh and Tina, Dr. Kays and the nurses. Lift up Josh and Tina and give them renewed strength for their spirits and their bodies. We thank You and praise You for Your love and presence in all of our lives. Thank you Father for each and every blessing, large or small, and for this precious family who has become ‘family’ for so many of us. In Christ’s love and in His holy Name. Amen. Tina and Josh and sweetest Ella, we love you – hugs – Steve and Joan

Marge (Indiana friend of Keith & Liz Mueller (Chris' parents) on September 20th, 2007 at 8:49 am #

My prayers are there for Ella and her parents; may God bless you all and continue to hold Ella in his loving, healing and comforting hands. I pray for an improved day for all as you walk this difficult path with Ella.

Cathie Firestone on September 20th, 2007 at 9:58 am #

I know how hard it is to watch Ella take a step or two backwards…hang in there…His timing is perfect and He WILL bring her through this…and you guys too. We are praying without ceasing.
With love, Cathie Firestone

Jon & Laura Sizelove on September 20th, 2007 at 2:34 pm #

Josh & Tina–
We’re praying for you and your dear sweet daughter. May the Lord give you both strength and peace and completely heal Ella.
Praying with you,
Jon, Laura, Mark & Rachel Sizelove

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