This year marks the 4th summer we will be going to NY with Sonzee. The only summer of her life we missed was the first year she was born because we were so afraid she would start having infantile spasms and we would be in the middle of nowhere. Every year since her doctors wish us well and send us on our way, reminding us before we go how proud they are for us not stopping our lives, how great it is that we still go, and how we can reach them at any time if we need to. Every year we pack up and go more excited than apprehensive, however, this year I am filled with more anxiety than excitement.
This will be the first time we will have traveled out of state with Sonzee since she had her central line placed in December. This will be the first time she will be on TPN/Lipids and we will not be within a familiar hospital's nurse's reach if she has an emergency or needs emergency labs. The closest hospital is a regional center that we have visited once and she was out of their comfort zone and all we needed was basic abdomen x-ray. I am so beyond fearful of a fever. I am scared out of my mind for a central line infection. Will she require air flight if that occurs since the children's hospital (that her amazing GI told us to use because she knows the doctors and will coordinate her care once we tell her we are on the way) is over 2 hours away?! I want to plan and prepare, I do not even know how, and I want it to be a complete waste of time and worry.
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