6/26/18 - Rainy Day

It was the perfect day to be inside, snuggled up in my bed and resting. At least, that is what my Mom told me. I lay spread eagle in bed and talked. She said it was raining outside again. Rain is neat. I’ve never seen or felt the rain, but my music player plays the sound of it and Mom said it feels like the water in my baths, but in tiny little drops that fall from the sky. The sky is like a ceiling for outside, I guess. It sounds a little confusing to me, so I hope to see and feel the rain someday soon so I understand better. I hope to have my new heart soon. 

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The doctors and nurses here have said there is a “season” for transplants. It sounds morbid, but it makes sense that summer time would be that “season” when more people pass on and organs become available. It’s good news for me that I am fighting my fight during this time of the year, rather than winter time. Hopefully my heart gift will come soon. A couple people asked if there was a reason I hadn’t gotten my transplant yet; there is a reason...location. My family follows several other little ones, different places in the country, that are very similar to me and whom have already gotten their transplant hearts; one waiting only 22 days! That, to the best of our knowledge, has a lot to do with location. When you sign up onto the donor recipients list, you can choose to accept a heart from different locations too. I am not in a spot that I can do much different than what we have done, so far as the list goes. I think being in big city’s (Milwaukee is big to us, but it’s a small city comparatively) like Houston, Boston and Chicago for example, very much increases you chances of earlier organs. That’s because there are more people in the area, I guess? Like, for me, I know a heart has to be to me in four hours. So I can only accept from certain distances. It’s all very confusing to us, honestly. Just hoping and praying and being very very patient. 

As you see, I already switched the NJ tube out for the NG. I guess that the NJ migrated and was curled up in my tummy, so they just went for the NG for feeds. I think it will be okay. Just getting a tiny bit of milk for now; testing the waters with a measly 5ml/hour. I am very happy to be getting milk again though. Still have the TPN for now. No other changes. 

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So tall ❤️ Good Night. Love, Heath

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