Thursday, March 28, 2013


I got a call today from Dallas letting me know that we needed to reschedule Ella's upcoming appt. again. If you remember we were supposed to have her appt. on the 1st, but that got postponed due to jury duty for her cardiologist. So we rescheduled with the team that is doing her liver testing and her cardiologist for April 4th. Today when she called, she told me that our state insurance contract with Dallas Children's Medical Center is expiring this month, meaning that any care in Dallas beyond March 31st will be denied coverage, and that we need to move out Ella's appt date to try to give them time to work something out.

After talking with the financial lady, she told me that she thought that Ella's upcoming surgery would still be covered, but that all outpatient care the insurance is wanting that to take place in Oklahoma. She told me that she is working on trying to get our insurance to cover Ella and other children who have had all their care in the past in Dallas to remain being covered in Dallas, but so far didn't know their decision. I told her that Ella was supposed to be seen a month after her cath, that would have been this week, so pushing it out again when she has open heart surgery on the horizon and she is still desatting everyday, made me very uncomfortable. She was very understanding and said she would talk to Ella's cardiologist and they would try to push the insurance in our favor quickly.

Right now I ask that you will just pray for clear direction and favor with whoever is making the decision about coverage through our insurance. We have no intention of switching Ella's care to Oklahoma due to finances, God has always provided for us and we know that He will continue to do that even if it looks a little different. Ella's health and well being will always come first. We do have some other options to look into insurance wise if this appeal falls through, it will be better then no insurance, but certainly not what we had in mind so soon. Anyway right now we really don't know much, so please just be praying for God's will to be made clear, and for our stress levels to stay as low as possible.

Thank you all for your prayers and support, we are so thankful to be able to bring requests here and know that they are being lifted up by so many of you that are faithful to pray for our family!

Monday, March 25, 2013


After writing my last post about different experiences we have faced in the hospital, I received some negative feedback that I feel the need to address. I don't post negative comments here because I don't think it's necessary, but the truth is although they are rare, they happen.

First and foremost I want to clarify that although we have had some bad experiences, overall we LOVE Dallas Children's Medical Center and the care we receive there. We have had MANY stand out nurses, I have raved about them many times here and we know that the actions of some nurses do not represent all of the staff. The blog was written biased off of collective hospital stays not just recent. 

Also I want to clarify that in my last post I mentioned the fact that I am thankful for, and respect nurses. I also talk about how I try to help as much as I can to make their job easier, only not at the risk of hurting my child. I stand by that. I am always as kind as I can be, and I am very thankful for good care. However to those of you who misunderstood and think I am disrespectful to the nurses and see them as the enemy, and that I just get in the way, that is not the case. I'm sorry if I came across too critical.

This blog is a place to document Ella's journey, along the way, it has also become a place for me to share my heart as her mom and to help others see a little bit into what life is like with a terminally ill child. With opening my heart comes the risk of being misunderstood and harshly judged. Granted that the few negative comments have always been "anonymous" and they are inaccurate, they are hurtful just the same. To be misunderstood and mocked is always hurtful.

We are doing the best we can to care for Ella, we are also so very thankful for all of the positive feedback we received on the last post. I am trying not to let the negativity of 2 anonymous people keep me from sharing with the rest of you, but it is discouraging just the same.

In closing, I would like to say again, that I am thankful for and I am respectful of nurses, yes sometimes we receive less then stellar care (if you have ever been in a hospital you know that happens), but we know that nurses work very hard and we know several incredible nurses and doctors that we are honored to be personal friends with. I apologize if my words were misunderstood and hurtful to you in the medical field, clearly, that was not my intent. Those in the medical field have saved my daughters life with their hard work, my gratitude is deeper then I could ever express.

Thank you all who choose to follow Ella's journey and thank you all who encourage me to continue to write from my heart. I pray that my words are uplifting and informative.

Thursday, March 21, 2013

Please just think.

To any medical professional that works on my child, this is what I ask of you.

I understand that this is your job, that you "know" what you are doing, that you do this everyday, but I simply ask that you stop before you come into my child's room and just think. Think about everything she has been through, think about the reason you wanted to become a nurse, think about the fact that you are working in a hospital solely devoted to caring for sick children, remember to show compassion.
 Think about the families represented here, the mommy's and daddy's who have had their entire world flipped upside down. Think about the Nana's and Grandaddy's who want to spoil them, think about the aunts, uncles, cousins, siblings, friends all who are affected by this one life in your care.
 Please realize that you are only seeing a glimpse into what she has been though as you take your shift. Please remember that when your shift ends you get to go home, while we face yet another night in a hospital.
 When you are complaining about the high maintenance mom that made you double check the meds, remember that you were wrong and I could have just saved my daughters life. Think about your own child and the care you would want them to be treated with. Think about the fact that everyone makes mistakes and as her mom it's my job to double check your work before it hurts my child.
 I'm not a threat to you, I am thankful for you, I respect you and always strive to speak kindly to you. I apologize when you have to go out of your way, I am always willing to hear your reasons for doing things the way you do. However, please, don't for one second mistake my position as inferior to yours. I don't feel superior, however, I am her mom.
 I will do my best to protect my daughter from unnecessary pain, from fear, from sickness, from prolonged hospital stays, etc. If that means asking you to switch heart monitors as apposed to switching all of her leads, please don't act like I asked you to swim across the Atlantic. If I ask you to use a smaller piece of tape, please know, I am in no way trying to make your job harder, I'm simply doing what is best for my daughter. If I remind you to wash your hands and you roll your eyes, it makes me question you all the more.
 I realize you aren't use to mom's like me. I know I keep you on your toes, but before you dismiss the way I want things done, please stop and think about how difficult life is for us right now, please realize that whenever you have been through as much as my daughter has been through, that just the mere sight of you will make her tremble, please, chose to treat me with the same respect with which I treat you. I am always willing to do whatever I can to make your job easier, but when it comes to my child, she will always come first. When I ask you not to wake her and you ignore me, it makes it harder to be kind to you, but I am.
 I understand that you are in charge of many children all at once and you can't have your whole schedule revolve around my daughter, but please, use me to your advantage, I'm here to help. I also understand that sometimes the way something is done can't be changed, I will step aside after you explain why and hear out our ideas for improvement. I have no intention of leaving you to babysit my child, in fact the less you are in her room the better. I do everything I'm legally able to do to help when it comes to her care. The bottom line is, it's not about you, it's not about me, it's about my sick child.
Please, I beg you, just think before you enter her room.

Tuesday, March 19, 2013

flexibility- it's the name of the game.

We will now be heading down to Dallas on the 3rd instead of March 31st, apparently jury duty doesn't skip cardiologists.

We had to reschedule the liver test as well, so now we will be having Ella's liver ultrasound at 8:00am April 4th, and then we will talk with her cardiologist at 9:30am.

Prayers for God's timing, that we stay away from germs, and get some answers are so appreciated. We have taken Ella off of the steroid that she was on. We didn't see any good changes while she was taking it. 

Ella is still about the same with her sats, some days are worse then others, but over all she is stable.

She did conquer going down steps by herself for the first time this last week!! We are super excited about that. I know this is something most kids have done already, but Ella has always had a huge fear of steps even with help, so this was HUGE! We are so proud of our big girl! 

Saturday, March 9, 2013

just a quick update

Ella is still the same, we will be heading back to Dallas April 1st to talk to her cardiologist and also to get an ultrasound of her liver. We are checking her liver to make sure it is not the cause of her desats. We thank you all for your continued prayers as we try to figure this out and keep Ella healthy!

 Snuggled on the couch for over 2 hours this morning, loved every minute of it!

This is her pretending to be cold :)

loves playing dress up!

Sunday, March 3, 2013

Home sweet home

Well we made it home from Dallas, I've not had the motivation to post here since. Not only have we been tired physically, but emotionally as well. My sister was so kind to update for us while we were there so that all of my focus could be on Ella.

As you know by know, we did not get the results we were expecting. We don't know when her next open heart surgery will be, and we don't know what is causing her problems. A little history of Ella's health : After Ella's 3rd open heart surgery when she was 6 months old she had stable oxygen in the low 90's as she grew her oxygen slowly dropped a few points every few weeks or months. That was to be expected leading up to the next open heart that she will be having. She did well all the way up until about right after her birthday in August. She began to have lower then usual oxygen levels and then in September it really began to get bad. Ella's oxygen was dropping super low and then going really high and it was just all over the place. It got to the point that every time she got up and walked even a few steps her oxygen would drastically drop to the 40's and 50's. We saw her cardiologist and they did an EKG, labs, and echo, to try to see what was going on, everything looked great, but they decided to do a cath surgery to try to explore more. So in October Ella went in to surgery. They discovered a VERY large collateral that had to be plugged. They told us that it was strange that her oxygen was going up and down since in the case of collaterals typically your oxygen just drops and stays low, but they told us that should fix the problem immediately. Unfortunately, that was not the case. Ella continued to have severe desats with activity and they didn't understand. They told us to watch her and keep in touch. This went on for about another month with minimal improvement. Finally in November she stopped desating and her oxygen leveled out at 86, it was beautiful. That 86 lasted a month almost to the day and then in December, we were right back where we started in September. Every time Ella got up and moved she was desating. So we saw her cardiologist on Dec. 27th to discuss her symptoms. We came to the conclusion that Ella had developed another collateral and that she possibly had something called arteriovenous malformations (AVMs). We decided she needed yet another cath surgery to determine if she had one or both of these issues. If she was to have another collateral, then we would probably plug it again in hopes of holding off her next open heart surgery for a few months to help her have time to grow and to get us out of the flu season. Then, if she was to have AVMs we would do her next open heart in the next few weeks give or take.

Now, back to Wednesday. We brought Ella into pre op and she was hooked up to check her oxygen. She was sating in the mid 90's. This is NOT normal. We were all confused and didn't know what to think. They took her back to surgery and when her surgeon came out to give us the news of what he had found, nothing could have prepared me for him to say "Everything looks perfect, there are no collaterals or AVMs." While this is good news in the since that she doesn't have to rush into open heart surgery, it is bad news because now we don't know what is causing Ella to desat.

So what do we do now? We pray for answers and we research hard. They told us that with Ella's previous diagnosis of intact atrial septum her lungs will always be a concern (if you remember, when she was born they were so damaged she almost needed to get a heart transplant to support them.) Anyway even thought they have made a nearly 100% recovery, they are still a concern. They decided to send us to see a pulmonologist to check her lungs. She has had x-rays, not to mention her lungs were explored internally during the cath, then when we met with the pulmonologist, we talked for a long time about symptoms, he asked a lot of questions (all of which our answers indicated perfect lungs), he watched video of her having an episode of desating, then he listened to her lungs for a while. Then he looked us and and said "okay, I have no idea what's going on here." She looks great, sounds great, all the tests look good. Then he said that he wanted to start her on a low dose steroid inhaler for a few weeks just to rule out asthma "even though I know she doesn't have it, I guess we should rule it out since the medicine won't hurt her." was his reasoning. I have to be honest, we aren't loving putting her on medicine just because, but at this point we have to start crossing things off the list in order to figure this all out.

Ella has been using the steroid since Thursday and we have not seen ANY improvement, in fact she has been a little worse. She has started coughing every once in a while and it is starting to sound a little tiny bit congested. This medicine can cause you to get upper respiratory issues and make it hard for you to fight off sickness (among many other yucky side effects)... great. So I'm itching for her two weeks to be up so that she can get OFF this medicine.

They also sent us home with an event monitor to search for arrhythmias during her desats. We are SO thankful that they gave us the kind that we can just hold directly on her chest during an episode versus actual leads she would have to have on her chest for a whole month. We have already had 3 episodes on her monitor. Last night Ella was playing in the living room for literally about 5 minutes and she was out of breath so we hooked her up to her pulse ox machine and heart monitor. Ella's oxygen that they would like above 85% was 38%. Now, a pulse ox is not fully accurate below around 50% but that means that even if it wasn't quite 38% it was still way too low. That is by far the lowest number we have ever seen. Before this it was 48%.

We are getting a little desperate to figure this out, because despite the fact that all the tests look great, clearly SOMETHING is not right. After this 2 week trial on steroids, we may be looking at getting a cat scan (CT) of her lungs (that is LOTS of radiation and not ideal at all since she would also have to be sedated) and also we may start looking into her liver by getting an ultrasound.

We are not sure when her next open heart surgery will be at this point. We expect it to be sometime around this summer still, however we really need to figure out what is going on before we send her into open heart surgery since it could potentially cause issues in how the surgery will affect Ella.

We appreciate your prayers as we try to figure this out and as we try to find peace in trusting that God is in control. We know that He knows every intricate detail of Ella's anatomy because He is the one who formed her. We thank you all for your love and support.

 Ella's special Chicken Friend at the Ronald McDonald House.
In her bedtime prayers, she said "Jesus, thank you for Mommy and Daddy, amen, oops and the chicken in the bowl that goes bawk bawk bawk bawk bawwwwk, in Jesus name Amen!" it was SO cute!
 Morning of surgery

post op recovery :(

 Sleeping on the way home from the pulmonologist.
Don't forget to check out our youtube channel for a few new cute videos or our sunshine on our trip! "amyladawn"