The Whole Story

I have so many fun and cool things to blog about from this past week. And of course lots of pictures, but those will have to wait.

I am sure some of you are wondering what is going on. Here is the whole story to fill in the gaps left by facebook! Yesterday, right before dinner, Alex and Skye were playing outside and spending some good bonding time on their last night together. Alex came up the back steps with a look of panic on his face. i thought that maybe Skye was hurt and he was coming to get us. As soon as he came in the door, I saw blood dripping down his stomach and a hole where his Jtube should be. We all immediately sprang into action. Alex was in quite a bit of pain. Alex's Jtube was placed 2 years ago in a surgery that took over 4 hours. He was opened up and had this tube surgically placed. I quickly grabbed our spare Gtube to see if i could get it in his intestines to keep the stoma (hole) open. I could not get it in and it was too painful to play around with. It was very clear we were heading to the hospital. We headed to the local hospital. They quickly let us know that they could not help us and that we would have to go to the children's hospital in Jacksonville. We drove the hour and a half to Jacksonville (the first hospital was not even equipped to transfer a pediatric patient). We arrived at the second ER around 9:30 last night. The two main concerns were damage to his intestines and a possible infection. We got here and they didn;t do much before deciding he would need surgery and they would just observe him until a transfer could be arranged. I did at least convince them to run some labs which looked okay. They started the process of transferring us to Houston when we hit our first road bump. Memorial Hermann's plane had left to fly out of the country and could not come get us. This hospital doesn't have a fixed wing plane so they started making some calls. They found a company capable of transferring us, but they would not do it without a $15,000 credit card authorization to ensure their payment. We do not have cc's so that was out. After much frustration it was clear that we were stuck until the morning when insurance authorization could be aquired. Today we spent most of the day in the ER still waiting on approval. Around 3:00 we were finally given a regular room. The social worker, the doctors, the transport company and the team in Houston all worked tirelessly to get thenecessary approval for us to be transferred. At 7:00 tonight I got word that Aetna has denied a transfer. We are still working on an appeal and also trying to get medicaid to pay it. If neither of those happen we aren't sure what to do. We do not feel it is safe for Alex to have surgery in a hospital unfamiliar with his care and then have to navigate his metabolic state post anesthesia and restarting feeds, etc. Our only other option is to get our home health to send supplies to run IV fluids while we try to take a commercial fight from here to Houston. No one thinks that is the safest thing for Alex either. So right now we are stuck between a rock and a hard place with no good options. We are just praying that one of the insurance companies will do what is best for Buggy and get us home.
On the bright side, Bug seems okay and has been an absolute angel. He really wants to get to Houston, but I could not ask for better behavior.
I will continue to update on facebook as things develop.
Thank you for being so loyal and loving our family through all our ups and downs.
Ali