Posted (Tina) in All Posts on September-4-2008

Ella’s morning was eventful with the figuring out the itchy response to the narcotics plus checking out her caudal epidural site.

The good news is that the caudal epidural site swelling went down as the day progressed. There is still some redness that they wish was not present, but cleaning the dressings and changing everything along with reducing the flow to 3.5ml per hour seemed to do the trick. So for now, they have opted to leave the caudal epidural in her lower back.

The second dose of Nalbuphine, to help with the itchy reaction to the narcotics, did not come soon enough. They can dose her with the med every 3 hours. The nurse let it go too long and Ella became really fussy.

At first, I thought that was the answer. Just give her the next dose of Nalbuphine. Once she received the second dose via IV, she was still having a tough afternoon. She was behaving like she does when she doesn’t feel well and is fluid overloaded.

I expressed to the nurse that something wasn’t right with her. I did not sense that she was in any pain, however, I do think that she is experiencing some type of discomfort. As I watched her, she wasn’t trying to scratch her face so that idea was eliminated. Still coughing and with more congestion in her nose, I could just tell that she was feeling crummy.

I asked about her labs. What did those look like from this morning? Her BUN was down to 16. Yep, fluid overload from surgery. Can you imagine the distress she would be having if we had not dried her out ahead of time? Also, we missed giving her the 9am dose of Bumex this morning. Because Bumex is given via g-tube into her belly and they had not yet introduced fluids into her system yet, they wanted to wait and give the 9am meds slowly throughout the day.

Once I asked about the labs, they also shared that her electrolytes, specifically her potassium and sodium were out of whack. After back and forth discussion, we resolved to skip the Bumex dose from this morning. Instead, we opted to get back on schedule for this evening with her diuretics and draw labs tomorrow.

Speaking of drawing labs, it was the hope that we might be able to draw labs from one of her IV lines, specifically the larger one that the surgical team inserted yesterday. No such luck, so the Bun had to get poked for her labs today and will need to on a daily basis. Sigh…

Back to a fluid overloaded Bun…she also had a chest xray this morning. I asked how that looked. They informed me that the upper left lobe of her right lung is collapsed (atelectasis). It could be a mucus plug or possibly even from inserting the bronchoscope or breathing tube too far from intubation. They think it is fairly minor and will clear up on its own within the next few days. We can do some chest therapy to help open up the lobe, but they are not sure she will tolerate it since she just had surgery.

The echocardiogram from yesterday shows some diastolic blood pressure issues in Ella’s heart (her blood vessels are not dilating as they should). This causes the heart to work harder to pump blood. Interestingly enough, this might relate to the reason she is so sensitive to fluid overload. Although all medical opinions are still being gathered, there is a chance that Ella might have to take Captopril, an ACE inhibitor. The expected benefit would be lower blood pressure resulting in an overall decreased need in her diuretics dosage.

For the next few days, the plan is simply to stabilize her from surgery. We are going to continue with the Bumex and IV Lasix to dry her out. At the same time, they will slowly wean her off the pain medications and remove the foley catheter once they take out the epidural. Finally, they are working up to full feeds via the g-tube. This morning, she started at 8ml/hour of pedialite (clear liquid) through her g-tube. They have worked up to 35ml/hour of IV drip and Pedialite and will see how she tolerates this volume overnight (her baseline volume). If everything is okay, they will work on her food strength tomorrow.

By the end of the weekend, we hope that she is in a better place and recovered from her surgery. And starting next week, the pulmonology team can begin trying to solve the diuretic mystery. If they come up with a perfect mix of oral medications for Ella and get it right the first time, it is likely that we would go home towards the end of next week. If they have any massaging to do, we might be here even longer. Once again, do they offer time shares?

Thank you for experiencing the highs and the lows on this journey with Ella Renae. I’m hoping she will be back to her silly self in a few days so you can feel her smile radiate off your screen and brighten your day.

Please pray for improved sleep and recovery for Ella. Also, that her parents would be able to get their much needed rest that has been lacking! Finally, that we will receive wisdom and guidance on the next best steps for Ella’s health and well as our lives in general.

Deuteronomy 4:29-31
(The Message: The Bible in Contemporary Language)
But even there, if you seek God, your God, you’ll be able to find him if you’re serious, looking for him with your whole heart and soul. When troubles come and all these awful things happen to you, in future days you will come back to God, your God, and listen obediently to what he says. God, your God, is above all a compassionate God. In the end he will not abandon you, he won’t bring you to ruin, he won’t forget the covenant with your ancestors which he swore to them.

The Riches on September 4th, 2008 at 8:28 pm #

God bless that precious angel.

Eve Johnson on September 4th, 2008 at 8:34 pm #

Praying that our Lord grants you a place in your unbelievably busy, probably overwhelmed, minds that you can retreat to for a moment of peace and rest.

Vicki/CO on September 4th, 2008 at 9:19 pm #

Oh, precious Lord, I lift Ella, Josh, and Tina to you for comfort and peace and rest and healing for baby Ella. We praise You, Lord, and know that You have a plan for them, and we pray they feel Your arms holding them gently and securely. Thank you, Lord, for being with this precious family as they go through this difficult time…may Your strength be infused into them. Amen

Jim and Char Jordan on September 4th, 2008 at 9:25 pm #

My God bless you during this very difficult journey. Our hearts break for your trouble but rejoice in the clear fact that you trust Him.

Julie Kirk on September 5th, 2008 at 3:02 am #

I’ll say it again, “Ella will be so proud of you (both) when she is old enough to understand this season in your lives”. Not what God put you through but what He brought you through. She will surely know that He has a special plan for her.
Praying that you all sleep well tonight.

Adrienne (Melissa's sister) on September 5th, 2008 at 4:18 am #

Wow… what a journey it is! As we pray for Ella’s strength and healing we continue to lift up the two of you and ask for your REST!

this morning it was so sweet… Carson – our 4 year old, came into our Friday school class (our weekend is Th/Fri) at the tale end and heard the teacher in my class praying for Ella and he said..”Hey, they are praying for Ella too?!” It was good for him to see others sharing our burden for your sweet girl. She is on all of our hearts…

Adrienne (Melissa's sister) on September 5th, 2008 at 4:19 am #

BTW – Amen to Julie’s comment about “not what God put you through… but what He BROUGHT you through” – that girl has some wise words! ; )

Roxie (Adrienne's friend) on September 5th, 2008 at 4:35 am #

We will continue to lift you guys up to our Father in Heaven for His wisdom, His strength, His love and His peace to flow into you as you stand by Your precious Ella.
Love to you, Roxie

Steve and Joan Odell on September 5th, 2008 at 5:54 am #

Prayers for peace and strength as the days unfold – Hugs – Steve and Joan

Kristen on September 5th, 2008 at 6:40 am #

Whew, talk about a long haul for all of you. *sigh* Would they consider a temporary femoral central line? Just the nurse in me. 😉 Praying for your sweet baby girl!

John & Estela on September 5th, 2008 at 6:52 am #

Ella have a wonderful day today… hopefully many of your mysteries can be resolved soon so that you feel better. Love you girl!

Laura Arneson on September 5th, 2008 at 7:32 am #

You sound bone weary and emotionally spent. Wouldn’t any of us be. Go for the time share on the beach in Hawaii a dose of sand, the sound of the surf and your daughter playing in the waves. I am constantly warmed by your faith and the total control you give to God…so many opportunities to be angry, doubt or just ask why? I love how personal God, your God is to you both. What deep commitments you both have, some day it is my prayer that when we are back in Colorado we will meet you and be blessed by your presence and your sweet daughter—she touches all of us! How many outfits does that girl have? and pink is surely someones favorite color there! I love to see her in shoes and the head accessories are fabulous! What a blessing, take special care of each other. GBYSO Ella

Debbie Bennett on September 5th, 2008 at 7:47 am #

Rest, baby, rest! May God Bless you all!

Megan on September 5th, 2008 at 7:55 am #

Goodmorning Ella I am sorry that you are having such a time. I hope today brings rest, peace of mind, and a healing body. You and your parents are such and inspiration to all of us. Hang in there guys!

Jennifer Harris on September 5th, 2008 at 7:59 am #

Josh/Tina – you two are magnificent! Your family is in our prayers and again we thank you for sharing. May the peace of the Lord be with you during this journey and Praise GOD for his grace.
Jennifer & Chelsea

Auntie Shannon on September 5th, 2008 at 8:50 am #

I love that verse. How beautiful. How beautiful you guys are too. What a journey – not sure how you do it.
Many many prayers.
The Euseys.

Joel Snyder on September 6th, 2008 at 10:06 am #

Ella, Hang in little girl. I know that you are uncomfortable but the answers will come soon. I will see you later. Love,Grandpa!!!!!!!!!!!!

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