Tuesday, April 30, 2013

Time for a second opinion.

I apologize for the lack of detailed updates, I haven't felt like writing at all. I have so much on my mind that trying to simplify it into an update is daunting.

We lost a very close friend this last week and our hearts have been so sad.

Ella is still desating with any activity, some days it seems to affect her more then others. They just can't figure this out. We have now thoroughly examined the heart, lungs, and liver. She obviously doesn't have a healthy heart, but they can't find any reason for the desats with only activity, her lungs look great besides some minor chronic junk from the damage that her heart caused while I was pregnant with her, again not causing the desats. Her liver results were ironically abnormal, but again, this is not causing the desats.

At this point Ella is getting closer to her next open heart surgery (it is tentatively scheduled for June 13th), but going into surgery without knowing what is causing her desaturation can be dangerous. I mean, we're talking open heart surgery, it's complicated enough without going in while dealing with a mystery that may or may not affect this next surgery. Ella's cardiologist has suggested that he send all of her records to Children's Hospital of Philadelphia (CHOP) which, I believe, is the number 1 children's hospital in the country (2nd in cardiology) to see if they can think of something we may have missed in all of our testing. We have given permission for him to send the records and we are now going to start the most likely long wait to hear their opinion. We are praying hard that they get back with us fast due to the time sensitivity of needing to figure this out before her next surgery.

Please pray with us for wisdom for all of the doctors at Dallas CMC and CHOP that are working on finding answers for Ella. Please pray for God's provision if we need to go to CHOP. As you know, I just fought a hard battle against our insurance to cover Dallas, CHOP is not covered so we would need to start that fight over again and it would be a harder fight. Please pray for health, if Ella gets sick it could take weeks, even months to get over it and she has to be 6 weeks sick free for open heart surgery, also she needs to be completely healthy for any other testing that may need to be done. Please pray for Ella's protection from all of the anesthesia she has had to have for testing. Please pray for peace for us as we are getting tired of sending our baby in for test after test with still no answers.

We truly believe and know that God is in control. We know He knows what is going on inside of Ella's body. We trust that in His time she will have her next surgery, we know that He will provide for us just as He always has, but we are also scared. We know that just because God is in control, that doesn't mean things will always turn out the way we hope. At this point we are trying to trust the fact that God sees the whole picture and we are to follow Him and trust because we just see a small piece. This is a hard season, it has been for the last 3+ years, please pray for us to have strength.

update later in the day:
We have also decided to send Ella's records to St. Louis Children's Hospital. They are covered by our insurance and have proven to be very helpful. Maybe between Dallas, CHOP and St. Louis we can find the answers! 

Friday, April 26, 2013

Update from Dallas visit

We got home from Dallas last night. Ella's MRI was abnormal, but after they studied it, they feel like it is not the root of our problems. Long story short, this is another dead end. At this point we have a lot of hard decisions to make. When we have a plan, I'll let you know what we have decided.

Please be praying for wisdom, health, and comfort.

We are clinging to God's faithfulness this week.

Monday, April 22, 2013

MRI soon.

We are heading to Dallas Wednesday for 2 days to get Ella's MRI on her liver. As always we appreciate your prayers for answers, safety, and health. I'll update as soon as I can with the information we receive, but we may not get the results right away.

Wednesday, April 17, 2013

Liver update

You may remember on our last trip to Dallas Ella had a liver ultrasound. We immediately were told something was abnormal, but that they needed more testing to fully understand it.

The next day I got a call from Ella's cardiologist letting my know that they have one of the best radiologists in the country and that she and her colleagues all had reviewed the ultrasound and they were stumped as to what is going on with it, but they agree something is definitely off. That is when the Radiologist said she felt that Ella needed a sedated MRI soon and that it needed to be done in Dallas because of the importance of the test being done just right. This information is initially what set me on fire to fight the insurance hard and fast. In the words of her cardiologist, "this is something we need to fight hard for".

We just got the dates for her MRI. We will be going to Dallas on the 23rd. Ella will have some testing on the 24th to make sure she is healthy enough for sedation and then early morning on the 25th Ella will be sedated and they will do the MRI.

We ask that you pray that we all stay healthy leading up to, and throughout, our time in Dallas. If Ella gets sick between now and then it will most likely have to be postponed since with sedation you have to be healthy for several weeks prior. Please pray that we are able to get into the Ronald McDonald House. Please pray that Ella remains stable, she is starting to have less energy and is sitting most of the time and when she is up she is often very out of breath. Please pray for good results and some answers!

We thank you all!

Tuesday, April 16, 2013

We have coverage!!

Hi friends! Sorry for the delay in updating, but I have been working super hard with insurance stuff and just heard this morning that our fight has been successful!!!! We have won! Ella is getting her single case agreement to continue care in Dallas and they are going to be contracting for other children in Oklahoma to go to Dallas too!! Our coverage should start by tomorrow AND they will reimburse us for our appointment on April 4th that we had to pay out of pocket for!

Friends, God is good!!

After the MANY phone calls that have been made I was discouraged and felt last night that my fight was just not going to be good enough. Throughout this process I have had a peace that God would work things out and I have done my best to trust Him even when it looked hopeless, but last night I had really started to struggle with the reality that God's plan might really be for us to leave Dallas, and I realized that I had to be open to wherever God took us for Ella's care. I was so upset last night, I cried and vented to my "heart mamas". I felt defeated, and even though I had a few more leads to follow through with, I felt like my steam for fighting was running out, at the same time I knew I couldn't give up.

 Last night when I was laying in bed unable to turn off my brain and sleep I began to pray, I asked the Lord to renew my heart attitude and to help me to trust Him, to realize I was doing my best and to let Him control the results. I asked Him to close doors that needed closing and open the ones He wanted us to walk through, regardless of what we wanted. I told Him I knew He could see the future and knew exactly where Ella needed to be. At some point I drifted off to sleep, I fought all night in my dreams and then this morning woke up to a phone call from our insurance company going something like this "Is this Amy?" "Yes" "Hi, this is Lisa, we spoke yesterday" "yes I remember" "Well I just wanted to tell you thank you for your calls to Children's yesterday, I don't know what you said, but it worked, we are not only renewing our contract, but we are giving Ella a single case agreement that will be filed today and should be finalized by tomorrow." "Are you serious?!?"... the conversation went on from there, we talked about our reimbursement and I nearly started crying tears of Joy while I was talking to her!

I worked hard, I made phone call after phone call, emails, talked to tons of departments, even talked with another hospital... in the end, this was all GOD! He made possible what seemed impossible. Last night I went to bed feeling like this wasn't going to happen, based off of all the people I had talked to that day. Then this morning I didn't even have to make one phone call. That, my friends, is in true God fashion, HE did the work while I slept.

I want to thank you all for your faithful prayers during this little side battle, now hopefully we can get back to getting Ella's health back on track!

God is good, He is faithful. May we always remember that even when things don't turn out the way we were hoping, He is still in control!

Thursday, April 11, 2013

calling for prayer warriors!

We are still waiting to hear if the hospital has been able to work out a contract with Ella's insurance. We are needing to go back to Dallas soon and we really need the insurance to come through. Please, pray hard, we are supposed to hear something today.

Update - it is after 4 pm now, and we never got a call. Still praying hard and hoping we will hear tomorrow. I have called 4 times and left a message, we do our best and trust that God is in control.

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!