Friday, October 5, 2012

Ella's appointment

Yesterday was a long hard day for the 3 of us. On Wednesday morning Ella woke up with a rash, it began to get worse and spread. We had to take her to her doctor to make sure it wasn't contagious before we could bring her to the cardiology appt in Dallas. It got really bad Wednesday evening and I couldn't imagine dragging her through a whole day of appt not to mention the 3 1/2 hour car ride covered in hives seemed like it would be miserable. Since she wasn't running any fever for the last few days, it seemed as if it was some sort of an allergic reaction and therefore safe to bring her to her appt after all. It was quite stressful to say the least. We were up after midnight trying to get everything ready for our trip since the whole day had been filled with trying to figure out what was wrong with Ella and not knowing if we could go at all.

The next morning Ella woke up with her rash looking much better and still completely fever free. We hit the road. Ella did really good on the trip down despite her itching.

We made it to her appt at 1:00pm right at nap time. Ella was happy and playing around laughing and smiling. I was emotional, being back in that place again, all the same smells and sounds, familiar faces walking the halls. I remember being very pregnant and sick and having our fetal echo done and here I was watching my beautiful thriving 2 year old spin in the hallway with her big smile. It was surreal as I watched her spin and walk around I knew I would remember it every time I walked into that waiting room for the rest of her life. I tried to picture her at 18 standing in the hallway waiting to be seen and I smiled. I struggle to see the future sometimes and it was nice.

When they called us back we passed echo room number 6, It didn't seem possible that it had been over 2 years since I had laid there so afraid of what we may face, of what our sunshine would face...

The hard part began as we entered the room for her echo. She immediately began to cry and we knew this day would indeed be as long as we thought. She fought us harder then I have every seen she really through her first "fit" as we tried to get her to lay on the bed. We had all sorts of distractions, her favorite snacks, movies, i-phone, stickers, singing... she didn't care she was so scared. She kicked and twisted, she pushed everyone away. Jon and I knew the alternative was to put her under and we were determined to make that a very last resort since it is dangerous. Jon held down her bottom half and I held down the top half as she screamed for her life. I didn't think we would ever get through that echo, but eventually she calmed down some. They scanned her chest for a good 30-45 minutes and it felt like forever to the 3 of us. She would lay very still and calm for several minutes and then start thrashing all about when they would push to hard or make her uncomfortable. It was terrible, but somehow by God's grace we did it. Unfortunately as Dr. Lemler put it, "she is very un-photogenic"  meaning it's really hard to get a good look at her heart because of her anatomy. He told us that even if they sedated her he didn't think they could see all that they would need to see.

We had several test to have done and Ella screamed at each one (seriously didn't know she had it in her!) She is always so easy and sweet at home, I just can't imagine how scared she must have to be to act that way. :( She had to get her blood drawn, I'm thankful it was a finger stick versus an actual draw. But it was hard non the less since it still hurts pretty bad because they slice it and then squeeze it over and over to work enough blood out. Next we had to get a chest x-ray, she screamed the whole time, but at least we only needed 2 shots and it was over fairly quickly. Ella was so happy between tests, she would just smile a play with her red nose a splotchy face.

After having all the tests, we met with Dr. Lemler to discuss them. I struggle with how to update all of you when their is so much information and so many "if's". What it comes down to is that her blood results look a little high, but are fine, her x-ray shows that one of the pieces they left inside of her during her last surgery has possibly moved and she has a broken sternum wire, the echo showed fairly good function but not great in one area ,but not really a problem right now, he said he has a lot of kids with similar function doing good.

We talked all about the oxygen problems Ella has been having for the last few weeks and he said he would talk to her cath surgeon and together they would decide if she needs to be cathed (go up through her groin into her heart and work). Dr. Lemler said he thinks this will need to be done in the next 3-4 weeks unless things get worse or her cath surgeon wants to see her sooner.

We then talked about the hard part. Dr. Lemler thinks it is possible that Ella has developed something that is causing blood that was previously going to her lungs and then her heart is now possibly bypassing the lungs and going strait to her heart therefore giving her even less oxygenated blood then she was getting before which would be causing lower sats. We do NOT know if this is happening yet and the only way to tell is by cath. IF this is happening Ella will get much worse, and the only cure is doing the Fontan. The Fontan is the next big open heart surgery that we were hoping to push until spring/summer 2013 at the earliest. Dr. Lemler ideally likes to wait to do the Fontan at 4 years old although lots of kids have them around 3, Ella just turned 2 in August. We are praying HARD that this is not the problem and that her sats come back up on their own. Dr. Lemler told us that doing the Fontan this early is really not ideal in anyway, he said it would be VERY difficult for her. He said even if this is happening he might still try to hold her off until the spring even if that means she has to wear oxygen, just to get her to 2 1/2 and to get passed the flu season.

This morning I got a call from Ella's cath surgeon's office letting me know that Dr. Lemler and Her surgeon had reviewed her echo and decided that Ella's cath will be 1 week from today. I'm not sure why it is scheduled so soon, I'm hoping it's just because there was an opening and not that it's that concerning.

Some good news is that this morning Ella's oxygen and heart rate were really good! Right now we are taking it one day at a time and knowing that God is in control. Please pray with us that Ella's oxygen continues to stay up so that she doesn't need an early Fontan. We are so thankful for your prayers during this difficult time.


  1. Praying for sweet Miss Ella!!!!!! I know Fontans are different based on the unique "version" of HLHS they have, but I know here they do them a little earlier routinely, more between 2 and 3 vs later.

    The cath is a big bummer... but hoping that they are able to get some firm answers and fix anything that needs to be fixed!


  2. Praying for you guys. Thank you for the update. I wish there were some way to send enough words to tell you how much we care and how fervently we are praying. There aren't. Just know we do and we are. XOXOXOXOXO

  3. Thank you so much for updating! I've been checking a ton since yesterday out of concern for Ella. It sounds like you're in such good hands there and I'm relieved that they are getting things checked out. Hoping the cath will give you good news:

  4. No one can understand exactly how you and Jon are feeling, dealing with so much at once, but know that there of plenty of heart families following Ella's story and praying for all three of you. We understand the strain of living with uncertainty...we understand calling on God 24/7 for calm passage through these storms. And we understand how His tender mercies fall like rain in our times of worry! May He be with you all and give you peace as you await the cath, which will give you answers and chart out the next part of this amazingly blessed journey you are traveling together! Sending our <3 and our prayers- Emma's Nana Jana

  5. Oh, that little sweetie having to go through so much. I feel so bad that everything stresses her out so. Please know that she's always in my prayers.

  6. Wow. Your updates always floor me. I cannot fathom being in your shoes. Ella has some pretty amazing parents :) Many prayers going up for your family.

  7. Poor little sweetie, having to go through all that. We are praying that the upcoming surgery will be able to be delayed for as long as the surgeon wants it to. Hang in there. Your little "pumpkin" has been so strong thus far. We will be watching for some darling Halloween pics. Prayers continue for your sweet little family.

  8. Dear Amy and Jon,

    I have been following Ella's Journey for a couple of years now and have been deeply touched by your love, devotion and tenacity in meeting the ever increasing demands of Ella's care. An acquaintance of yours who attends Immanuel Baptist Church directed me to your blog and I have been following your story ever since.

    Ella Dawn's name has been placed on the "Prayer Chain" of the Divine Savior Catholic Church located in Downers Grove, Illinois. Besides myself, she now has hundreds of Divine Savior parishioners praying to Jesus for her health and recovery.

    Among all the Saints, St. Raphael is one of the seven Archangels who stand before the throne of God. He is known as the healer. He is powerful and heals all forms of maladies in both humans and animals. St. Raphael is also known as patron of travelers and he helps to guide spiritual journeys searching for truth and awareness.

    A prayer to St. Raphael for Healing

    Glorious Archangel St. Raphael, great prince of the heavenly court, you are illustrious for your gifts of wisdom and grace. You are a guide of those who journey by land or sea or air, consoler of the afflicted, and refuge of sinners.

    I beg you, assist me in all my needs and in all the sufferings of this life, as once you helped the young Tobias on his travels. Because you are the "medicine of God" I humbly pray you to heal the many infirmities of my soul and the ills that afflict my body. I especially ask of you the favor of healing our child Ella Dawn and the great grace of purity to prepare me to be the temple of the Holy Spirit. Amen.

    May God bless Ella, Jon and you.



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