In the Eye of the Storm

This will be two posts in one. Honestly I've neglected this blog because our family was blessed with baby #4 and life is so crazy I haven't made the time to post. But there is a lot so hold tight!

POST 1 - God I know you're faithful but...

One year post-op Rebecca was doing great! her curves remained relatively the same since surgery which was a huge praise. But then puberty hit and a huge growth spurt. Rebecca started complaining of back pain. We took her to the ortho and the x-rays showed that Rebecca's bottom curve (the one that wasn't fused) had significantly worsened. The good news was that her hips are still aligned and her shoulders are still aligned. The doctor reminded us of how many limitations Becca would have if she was totally fused. If she could strengthen her back she would have less pain but be able to live with the bottom curve the way it is. He prescribed her to go to PT which has helped some but Rebecca has struggled to be active. Activity/exercise is what she needs to strengthen her back. We chalked this up to being a "lazy teen" at first but then I started to pay more attention to what was really going on. Rebecca had begun a really strange pattern of eating. Again, I thought it was because she was a growing teen. But really she was refusing a lot of food, eating less. So I made an appointment with her GI doctor. I explained this new struggle and immediately she wanted to see what was going on so she did an endoscopy to look into her esophagus. While Becca was still waking up the doctor sat down with Josh and I. I will never forget what she said:

 "I don't know how our girl is surviving like that. It's really bad, she has ulcers all down her esophagus. If you or I were like that we would be in the ER bc we would think we were dying. She is so strong. We gotta fix this."

Our hearts broke for this precious child of God. We felt horrible that she's been living like this. The doctor put her on 40 mg of nexium to take daily. 6 months later she scoped her again. We thought for sure there would be a drastic change with all this medication. Rebecca was very faithful in taking it. Nope! NO CHANGE! How could this be? So the Dr upped her to 80 mg of nexium a day. 6 months later she scoped her again. NO CHANGE! what in the world is going on? How is this possible. The Dr had no answers for us.

Josh and I prayed and asked God to direct our steps. We knew he had not allowed Rebecca to survive to just let her suffer. We knew He had great plans for her. He had already began a good work in her and He will be faithful to complete it. She was growing closer to Him and had developed a servants heart towards others. We knew God had a plan, we just needed His guidance because we could not see it. We had an appointment scheduled with Dr Kays (he is a doctor we had recently found who has only cared for CDH patients during the past 25 years). Before this appointment I asked God that Dr Kays would be the clarity we needed in Rebecca's treatment. She had seen him a few times before but only for consultation based appointments, due to the fact that Rebecca already had established doctors that had cared for her since birth. At this appointment Dr Kays said "can you release Rebecca to me?" Those words would be our clarity. It was our answer from our Heavenly Father. God you are faithful!

POST 2 - In the Eye of the Storm

So it's been almost a year since Dr Kays has taken over. He has mentioned a Nissen surgery multiple times. Not that he wants to do it, but he thinks she may be in need of it. Again I went "la la la la" in my mind each time he spoke about it because it's not a fun surgery and some pretty serious lifelong side effects. In addition to this discussion, Rebecca was in need of a simple surgical procedure where her original g-tube incision site had grown up near her ribs and was causing discomfort. The DR wanted to make sure she wasn't going to need the nissen surgery before performing this one, because he would rather do 1 surgery than 2. Once again we were on our knees, "Lord we are just asking for clear direction. Please let the results show 100% one way or the other. Please take the decision for this surgery out of our hands. We are weak and need you to take this from us." And once again He was faithful.

The Dr drew us this picture. The top is a normal stomach, the bottom is Rebecca's stomach. If you were to turn this paper upside down you would see a funnel. Every single thing that Rebecca has put in her body her entire life has funneled back up into her esophagus. No amount of medicine can fix this. This is a deformity of her stomach that REQUIRES surgery. If she does not get the surgery she WILL get esophageal cancer sooner than later. Praise God for using this Dr to make things clear for us. Now like I said, we only found Dr Kays a few years ago. He then told us that if she had been his patient from birth he would've done this surgery at around 1 years old. That is how serious this is. And now we are looking at surgery on March 23rd. I feel like I'm in the eye of the storm. It has been some crazy weather lately, and this clarity has been a chance to breath. But now we are facing the other side of the storm.