After Christmas, Daddy started to put together a plan. It was hard at first with so many unknowns, well one in particular, when my surgery was going to be set. He called and set me up to be included for insurance, assured that I would be added before surgery would take place. No one really knew what to do at work, so the days that daddy had off he would spend most of the day on the phone or waiting for phone calls to help assist. The only plan available to him was a 30 day no pay leave of absence and he would have to pay for his benefits such as insurance and all for the time taken off. Planning the drive and knowing how far that I could stand and not jeopardize my health and to find a place to rest at each spot. Not knowing when surgery was going to be led to housing problems — affordable housing in Palo Alto California. We are on the list for the Ronald McDonald house but not knowing our arrival date meant we could not guarantee a room for us nor have one held. Daddy was also watching the weather very closely, trying to plan for anything that could happen especially the weather. We would be driving through many mountainous areas and snow and ice could be a large factor on how far we could go. Luckily, for now, it seems to be too warm for the trip. My God Father Ian loaned us a set of snow chains just in case it did snow though. Daddy kind of smiled while looking at the tire chains and thought to himself, Lord please don’t let it snow. The route we would be taking looks like it is all set. Daddy made sure our cell phones would work through the trip and where the blackout areas were. He had made sure his GPS system was all located and ready for the road trip as well. Much of the trip could be handled if needed by our Map system on our cell phones, but there were areas that it seems no cell phones worked so the TomTom was essential for the trip. Our wonderful friends from Saint de Vincents would be gone for the holiday but knew surely they would be back in time before we would leave, Daddy even set aside some food so we definitely had something to eat for several days, even if we were stuck on the highway because of road closings ect. Things looked like they were all beginning to come together, all but one–when was our surgery going to be.
My Mommy has been very busy too. Not only taking care of me and Brother but trying to make sure all of our clothes and hers as well are ready for the long trip. It was very tiring for her and to keep up with the house. Luckily she had Lola here to help her as well. With anxiety tensions were still high trying to keep up with everything. Doctors visits. I went to my last one hopefully before I go to surgery–my pediatrician is going to take a week break.
Finally, Wednesday the 28th 2011 we get a phone call. The Surgery is set for Friday January 6th 2012. Now the Chaos begins–Confusion Strikes. So Little time to prepare all things. The Insurance company hasn’t finished adding me to their personal plan, Billing is either needing to have him fully in the insurance plan or a down payment of 250,000 dollars to get the surgery scheduled and proceed as scheduled. What a shocker. I thought Daddy was going to have a heart attack–instead even though he tried to hide it I witnessed tears coming down his cheek. So, he pushed the insurance company as much as he could while getting pushed by the Hospital billing department. All the while trying to get time off squared away and someone to help him at work. Shucks his supervisor was getting ready to head out-of-town so she said to wait until she got back she had no time to help or to deal with it now. She did all she could or thought she had to do. Why didn’t she call the 800 number for benefits, they even emailed her with what they needed to happen. Finally the day before needing to go, we were needing to leave by the 2nd of January in case there was any trouble–like snow to slow us down or any emergency with me because of the higher altitudes we would be traveling through. Nevertheless, a Supervisor did help Daddy out and fax the information to them approving the leave without pay. If this wasn’t done Daddy could have been fired for job abandonment.
So may other things now we have a date. Trying to find a reasonable motel for each stop was tricky but the Motel 8’s were so helpful and gave reduced rates to help us. How awesome they were. Mommy was now under even more stress to pack everything up and get it ready for loading the car. Our friends had finally made it in right before we were leaving. They were very great with such notice in helping us out with everything they could. The Last Minute the Insurance Company finally got me on in mommy’s plan so the billing department was happy.
Ronald McDonald house may have a room for us, not sure but if not–we have a room for a night somewhere that was donated to help us out in case we needed it. Daddy got the car all checked out and the oil changed and ready for a long trip. So many things to figure out. See, here in the State of Idaho we don’t have any surgeons that are capable or hospitals capable of fixing my heart. Mommy and Daddy did so much research that Lucille Packard children’s Hospital with Dr. Reddy was ranked number 5 in the nation. Daddy always said only the best for my children — not that we are rich, but we are rich in love for each other.
We were all set to leave on January 2nd, 2012 which is a Monday and needed to have me checking in on that thursday prior for tests and all to be run and surgery friday. Sunday, everyone was on pins and needles — never understood why Daddy says that needles hurt, but anyway, daddy went down to the Local police department and requested extra patrol around our home while we were gone. My God Father Ian was given a key to come in and check the place out as he pleased and even the neighbors-especially Leone was a huge help during my daddys absense.
Finally, I think we are ready to go…