Posted (Tina) in All Posts on September-25-2008

Ella slept a bit better last night. She did not start her retching until 4:30am. By 6am, I was up with her.

It was tougher to sleep in the ICU because it isn’t totally dark. But it is nice to have such close monitoring of Ella; the nurse is literally behind the glass watching her the whole night. This did make it a bit easier to disconnect and focus on trying to sleep.

By mid-morning, Ella’s color was not great. Her heart rate was between 175-190 while she was just laying in her crib. She was breathing fast at 78 breaths per minute. Her secretions seemed to be increased slightly over yesterday. Everything just felt like she was too wet. Maybe not a ton, but enough to cause us concern.

We called in the nurses and then the docs to assess her and told them about our concerns. They agreed and decided to chase her fluid with a dose of Bumex. Within 2 hours, she peed 340 grams of urine. That is a significant amount. It sure seems like whatever amount of diuretic that she has been on in the past few days is not enough to sustain her.

After the Bumex, it seemed like Ella became herself. She was smiling and laughing. Clinically, her color looked better. We’re hoping that we can figure out why she is so fluid sensitive. The procedure tomorrow should provide some answers.

On that note, we have been confirmed for 11am for the procedure. The heart catheter procedure is invasive. For that reason, we are not excited about it. But we are hopeful that it will provide more answers.

When they did the echo 3 weeks ago, they saw a borderline case for left ventricle dysfunction. Their theory is that her left ventricle is small, narrow and stiff; it doesn’t pump blood as effective as it should. This is what Captopril helps correct. That seemed fine except once the Captopril was on board and they started to decrease the diuretics, her heart rate became fast. In the past, she only had a high heart rate if she was fluid overloaded.

Ella has been on sildenafil for months (opens the vessels and allows for more oxygenation) and although not common, they wondered if the sildenafil interacting with the Captopril was causing the high heart rate. So when they weaned her sildenafil over this last weekend, then her saturations started to suffer and she needed more oxygen. Rather than just increase the sildenafil back, they had an echocardiogram done.

The echocardiogram made the doctors nervous – that is why we’re in the PICU. It showed that along with her left ventricle issue, that there is evidence of tricuspid regurgitation. This means that some blood leaks backward into the right atrium, increasing the volume of blood there and resulting in less blood being pumped through the heart and to the body.

When I did some research online, I noted in a forum that one doctor told a patient that the best way to manage tricuspid regurgitation is with diuretics. This makes me wonder. Has Ella always had tricuspid regurgitation but with the massive amounts of diuretics, it was being masked or managed? I still think that sildenafil makes a huge difference for her. But the echo the other day is also the first one where she has not been on massive amounts of diuretics.

One thing is for sure: her dose of massive diuretics started to not be effective any more. That is why we came to the hospital in the first place. But, it does seem like a lot of variables including her meds have changed over the past few weeks. And when she has had a high heart rate these past few weeks, we have not heard the possibility that maybe she needs more diuretic. Food for thought…

To prepare for the heart catheter procedure tomorrow, they did an ultrasound to look for access points. They decided that her right leg looked optimal. Ella does not have a great history with access points. We’re just praying that the procedure goes smoothly with no complications.

Lord Jesus, please protect our baby girl. As she prepares for this procedure, please wrap her in your love. We know that you will be with all the doctors. We pray for wisdom and discernment. Lord, our desire is that they would learn about Ella and her anatomy so well that this knowledge would give us huge strides in her care. We praise you and thank you for where you’ve brought us and for where you are taking us as each day passes. We trust in your plan for Ella. May we continue to seek you through the highs and the lows. In Jesus’ Name, Amen.

Kelly the Nanny on September 26th, 2008 at 1:58 am #

Poor Ella. I wasn’t expecting a post this late, but after I e-mailed you I thought I’d check for an update one more time before I call it a night.

I’m glad the diuretics are helping for the time-being, and she got a little relief today, but hopefully her little body will start working a little better so she doesn’t need the diuretics. Hopefully the procedure tomorrow will answer the questions as to why it’s not.

I’ll keep it short tonight, but I’m praying that God will watch over Ella and Mommy in the ICU tonight with his massive hosts of Angels, and that they would follow Ella into the operation tomorrow and He would guide the surgeons hands.

Jeremiah 13:16 says
“Give Glory to the Lord your God before he brings the darkness, before your feet stumble on darkening hills. You hope for light, but he will turn it to thick darkness and change it to deep gloom.”

The way you, Josh and Tina, Glorify God amazes me. I can’t imagine how much it must feel as though you’re in this time of darkness–like you’re watching some b-rated black and white movie and the screen goes out and you’re left watching a black screen, but you can still hear the conversations. But then you notice that it’s not totally black… there’s still a small speck of something there. And the fact that you can still see the hope and have that faith in Christ after all of the ongoing sadness and confusion, is amazing. You are so occupied and committed to God’s ways, rather than preoccupied with your own. You’re so thrilled with Him and devoted to Him and committed to Him that you can’t seem to get enough. (and don’t try to say I’m too nice… there’s not one single person that reads this blog that doesn’t agree with me!)
Hopefully the screen gets turned back on tomorrow in full color. I’m certainly praying.
I’ll call you after my little event at CCU, and hopefully we can hook up for a few and say some prayers and exchange hugs. Can’t wait to hear how Good God is after the surgery 🙂

The Brittain Family on September 26th, 2008 at 4:02 am #

It’s a big day and we’re praying that the surgeons will be guided towards finding the best way to help little Ella out. We trust her into His hands.

Lisa (Ms. Texas) on September 26th, 2008 at 6:29 am #

Sounds like your research is spot on…the diuretics may have been masking the heart issue this whole time. Are they absolutely sure her kidneys are functioning properly? I am praying that the heart cath is able to be performed without incident and that this view of Ella heart will provide the information needed to get her fluid issues stable… heck lets pray it will give the doctors the insight to heal this issue once and for all! God Bless and protect you all!

Julie Kirk on September 26th, 2008 at 6:44 am #

Ella is so very blessed to have you fighting for her. God has truly blessed us all through your faith and perseverance. continued prayer for little Ella. love, julie in saudi

Chambers Family on September 26th, 2008 at 6:53 am #

I sure hope and pray that the doctors read this blog or a nurse! We pray that the medical team treating Ella tunes into the Mommy that has noted all this great information for the Doctors. Tina; You might even start taking a stat log in excel (if you haven’t already) to chart her meds with o2 and and heart rate. So whether in or out of the hospital you can gage with written facts how she is doing every day. Our prayers are with you and Ella today.

Williamsburg on September 26th, 2008 at 6:57 am #

Thanks again for sharing the journey in so much detail with us. We will be in prayer consistently today for the procedure and everything related. All our love. XOXOXO

Debbie Bennett on September 26th, 2008 at 7:25 am #

We are praying hard! God Bless

Kristen on September 26th, 2008 at 7:29 am #

Got you covered in prayer as well as the staff. Looking forward to getting an update on the procedure later on.

John & Estela Williams on September 26th, 2008 at 7:50 am #

Praying for her, Praying for her today. Please keep us posted through out the day. God protect baby Ella during her surgery. Love ya, The Williams

Eve Johnson on September 26th, 2008 at 7:56 am #

Praying for a viable access point, a smooth procedure, and an outcome that provides insight into Ella’s recent difficulties. The Lord will prevail in all things.

LoriAnn Kuhn & Family on September 26th, 2008 at 8:02 am #

Each time I miss a few days, I realize HOW MUCH I miss. I, too, was in the PICU with one of my sons when he had RSV. Not that RSV is as bad as what you are going through; it’s just that I actually rested more there, since I knew that a nurse was there full-time and even if he/she wanted to go potty (yes, I have a lot of kids – lol) he/she would have to get someone to watch over our 3 month old. I wore a sleeping mask and that helped with sleep. My husband stayed at a Ronald McDonald house with our other children, and I slept in the PICU, since I was still nursing. I couldn’t nurse while he was sick, since it just clogged him up more, but got to pump (they threw the pump away after, since RSV is so contagiuos). They would give me a sedative and I would get the best sleep ever, knowing that my son was in good hands; not only His hands, but a constant observer.
I hope that y’all are getting the rest you need as you prepare for this next challenge. I know it is hard to hand over your precious gift to others, but we all have seen what the Lord does as He puts an Angel, or two or three, by the doctor’s hands and Ella’s body.
You may have already had the surgery. I don’t recall reading a time. I hope that you keep us all up to date as the day goes by.
Kelly – you brightened my day about the testimony that you were able to share with your friend. What awesome words the Holy Spirit put in to your mouth and into your friends heart. I LOVE seeing someone come to the Lord for the first time; it just re-iterates to me how awesome He truly is and how blessed we are to have Him in our lives. I have always wanted to meet this family and am a bit jealous that you will be living with them. 🙂 I am glad that the Lord sent you to them, especially at this time.
Tina and Josh, I am praying for His Angels of Mercy to follow and be with you and Bella-Ella during this trying time. Not that you don’t have enough trying times, but especially when you can’t be with her and watch what they are doing to your baby. I am actually glad that they put y’all in the glass cage, as we called it. Nothing gets past the eagle-eyes of those PICU people. Plus, their is always a doctor on hand, which is just another comfort to your minds and spirits. I know how much y’all want to be home to move to your next home. I pray that all of these people that are near you, just show up one day and move all of your stuff AND put your boxes where you can find the stuff you need quickly – lol.
On that note; my sister and her family live in Colorado Springs but go to Denver every weekend (picking up and dropping off kids) and I was wondering if you would like some help from strangers. They are strange – lol – but helpful. I don’t want you to feel uncomfortable, so just e-mail me if you would like for me to contact her. Plus, she “knows” people and could probably help get a crew together. You would just name the place, time and all that. My sister is very organized, in an OCD way, and would make a great helper for you time of need. Really, just let me know.
Prayers for today, and every day, to you and your family and your extended family that watches over you.
LoriAnn and the Gang

LoriAnn Kuhn & Family on September 26th, 2008 at 8:04 am #

btw. Wow! I almost put Kelly’s posts to shame.
Tina and Josh, I forgot to say thanks. Thank you for putting your verses in your posts; they truly inspire me and get me to open up my Bible more often than usual. What Warriors you are!
LoriAnn (again)

Lisa Richmond on September 26th, 2008 at 8:32 am #

Love and Hugs from Seattle to all of you…May you find peace and answers today! Ella will come through this…at this point…this is just another “day at the office” for little Bun!…just think of the glorious days she will have when she realizes and knows a life outside of tubes and docs and nurses!
He is with you … do not worry.

Joel Snyder on September 26th, 2008 at 8:34 am #

Ella, I am praying that your procedure today will go well and that we will get the answers to help you get better. I will be coming to see you later today. God please watch over Ella and the Doctors and staff today. Tina and Josh I will be in touch with you all day. Love,Grandpa!!!!!!!!!!!!!!!!!

Kelly the Nanny on September 26th, 2008 at 8:51 am #

Haha LoriAnn… I really thought my post early this morning would be short! They’re His words, I just use them every once in a while 😉

Josh and Tina, I won’t be near my computer right at 11–actually, interestingly enough, I have managed to gather about 100 people at CCU at 10:55 and we’re going to have about an hour of prayer strictly for Ella. I sent out a huge e-mail to every person I knew there and it got around and I’ve had 102 people already say they’ll be there. Of course, they have links to the blog and everything, so they’re reading (and I’ve sent them some short-versions of the condition and surgery and so on) but there will be a herd of Christ Seekers on your side about 20 miles away right at time of surgery, and through the first portion of it. I’m so blessed to have friends and acquaintances that are so willing to lift Ella and mommy and daddy up in such a stressful time. I hope you feel the strength pouring down on you during this time. We’ll definitely be lifting you all up.

It’s “intermission” for the chapel service I’m at now, but I wanted to drop a quick line and let you know that you’re soo protected and looked after and loved by so many people that have no idea who you are or what you’ve been through.

Wow! The ways he calls us to humbly submit, and the blessings upon us which he bestows for laying it down and seeking Him.
Again, praying for full color and clarity! I love you Josh, Tina, and princess Ella! Pull through little girl. We know you will! 🙂

Steve and Joan Odell on September 26th, 2008 at 9:53 am #

Dear Hearts – our prayers are constant for the three of you – you are in our hearts and thoughts. Our love – Steve and Joan

The Riches on September 26th, 2008 at 10:57 am #

Praying for you sweet baby!

Roxie (Adrienne's friend) on September 26th, 2008 at 12:32 pm #

WOW Amen to all the above! We are parying for you all but most especially Little Ella Bun that Gods’ hand will be upon her and all those that come in contact with her during this next ordeal. Love to you from Arabia, Roxie

Laura Leichty on September 26th, 2008 at 12:43 pm #

My heart goes out to all of you! I’m praying for you today and hope they discover how to correctly treat Ella’s condition. Please know you are not alone, there are complete strangers in this world (like myself) that are praying for each of you. Our God is so powerful and I know HE is listening and LOVES you so much! Your endurance and compassion is admirable and you are such a reflection of HIM. I hope there will be much brighter days ahead for all 3 of you! You are a beautiful family.

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