Thursday, April 4, 2013

Back from Dallas!

We headed down to Dallas yesterday around 2:00pm. We had to wait to hear about the insurance drama. We headed down even though it hadn't been worked out yet, our contact at CMC told us to come on down and get Ella the tests she needed and we would work out the money later. We were so thankful for that! It pretty much rained the whole way down, not to mention we hit some serious traffic... needless to say it was a longer then usual drive, but we are blessed with a super great traveler! On the way down I thought about how happy Ella would be to see her friend the little wooden chicken that she made fast friends with last time we were there. I knew we could take her to see it no matter what room they put us in, but I was hoping that we would be down the same hall so that she would feel more "at home". In all the times we have stayed at the Ronald McDonald House, we have never even been in the same wing twice so I knew chances of that were not likely (it's a big place!). Anyway on the way down I said a little prayer to God, knowing it might seem like a petty thing to pray for, but I prayed we would be near our other room we had stayed in last month for Ella. Well, it's just like our God to show us how much he cares, because we got the room right next door to our other room! I couldn't believe it, I hadn't said a word to any of the staff or even Jon about my prayer. God just really cares about details, I love that about Him! We got checked in to the Ronald McDonald House and since the drive took so long we had just missed dinner, so we loaded back up and headed out to pick up some to go food. Once we got back we pretty much climbed right into bed since we had an early morning ahead. Ella went right to bed, since she felt familiar with the room this time!

We got up and got ready and we arrived at the hospital at 7:30am. We went through admitting which is usually terrifing for Ella, but this time she only cried for a minute when she realized we were at the hospital, after that she was SO brave!! We first had a liver ultrasound done to check for AVMs (atrial venous malformations) they are VERY rare, but we are still trying to find what could be causing her oxygen to drop with any activity. They did find something on the liver that shouldn't be there, but we don't have the word on what exactly it is at this point and if it could be factoring in to the desat episodes that she is having. We should be hearing from her cardiologist on that soon. We did have to have labs :( and she wasn't happy about that (I totally don't blame her!) her numbers looked a little high, but it hasn't gone up since last time so that is good. After that we met with her cardiologist and we got her weight checked, she is up to 30lbs!!!! I can't even tell you how amazing that is! Her cardiologist was able to watch her desat, I'm thankful for that.

Right now we are going to follow up with the liver abnormality, and then from there we will decide what is next. We are still possibly going ahead with her next open heart surgery this summer, but we really need to figure out her oxygen as best as we can first. We may be seeking some opinions from children's hospital of Philadelphia if we hit more dead ends. We completely trust the staff at CMC, but this second opinion would be with their full support (another reason we love them!) They put patients well being above egos and that says sooo much about a doctor!

We found out more detail about the insurance problems. It turns out that even though our insurance only pays a small fraction of what is billed to them, they have decided that they still pay too much, so they are cutting how much they will pay. This leaves the hospital to pay for what the insurance refuses, so the hospital put their foot down and said that wasn't good enough. So now the hospital and the insurance company are fighting over money, and the sick kids like Ella are falling between the cracks. Basically there are about 3 or 4 patients with this insurance that have been going there to CMC since birth and the hospital doesn't want to send them away, so they are trying to make individual contracts on our behalf to get her through her Fontan and recovery at least! I hear that Ella's surgeon is really sticking up for her and is basically saying he won't let her go to another surgeon hahaha I LOVE him so much right now!!!! He seriously is so passionate about his patients that we are so blessed to have him on Ella's team! I can't say enough good about the lady that has been working tirelessly to fight and to get word to Ella's surgeon about everything! The staff at CMC is really truly incredible! We did have to make a payment today out of pocket, but if everything works out and they get us a contract then we should be able to be reimbursed through our insurance! Praise the Lord!!!! I have no doubt that your prayers and our prayers are being heard! We should hear by early next week if they are able to works something out between them for her! God is truly taking care of us!


  1. What a cutie she is! Hope you find out everything that you need to and that cute little girl feels well!

  2. A big YES! I was reluctant to suggest getting opinions and diagnosis from other children's hospitals throughout the country. Considering all that Dallas Children's has done for Ella, I can imagine how grateful you are to them - however - if you have run into a dead end, then by all means seek other opinions. U.S. News & World reports ranks Children's Hospital of Philadelphia as number two in pediatric cardiology in the nation. Since you're from Oklahoma, Texas Children's Hospital in Houston is ranked number three - not too shabby. The number one ranking is Boston Children's Hospital. You may already know all of this yourself, but I thought I'd forward it to you anyway. I don't know how your insurance handles out-of-state referrals, but I'm certain God will help you find a way.


  3. Praying that the insurance issues get straightened out. It's hard enough to deal with what Ella's going through, but when you factor in how you're going to pay for it, that just causes more unneeded stress.


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