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"


  1. Amy we continue to pray for Ella and you and Jon for peace that God is in control. Ella is a Special Miracle girl thats taught Nanny faith like nothing else! I watch her videos and pics on FB and just want to hold and squeeze her but know I can't. I can pretend tho----LOL Love HUgs and Prayers sent your way again:)

  2. Those videos are adorable! What a sweet little spirit Ella has. What a blessing.

    Hannah loved the videos! She loves Cinderella ("Rella") too.


  3. I hope the doctors find the problem soon, but it is great that all the tests were good.


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