6/25/18 - The NJ’s Back, Back Again

I was very thankful for today. I spent it snuggled down in my Boppy pillow with my pony. I noodled myself into the most comfortable position I could get into and slept so hard. I’m glad to get so much great sleep the last few days. I needed it after how rough of a time I had last week. I am feeling a little better, but I’m still on a cooling pad to manage my temperature and in turn, also my heart rate. It sounds simple, but it’s kind of a big deal. Hopefully I will get a little better and be able to come off of it soon. I’m also on some medicines that I need to wean off, left over from the rough week, yet. Working on that now. 

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As you can see, I have a new tube...the NJ is back. That’s the tube the gets milk past my stomach and right to my intestines. This makes it so I can get fed milk and it won’t be as much work for my body to process, as it would be if it had gone thru my stomach first. The doctor that placed it back in my nose this morning did a great job and made it very easy on me. I was thankful for that. There was some red stuff in my breathing tube though today, so Mom was a little worried. Will see if that goes away tomorrow. It should. Happy to have the NJ back and get real food. Hopefully the TPN (IV nutrition) can be gone tomorrow. Starting slow and low with the milk feeds and it’s going well, so far. Pray I can do this again. It’s a lot of work for me. 

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I woke up and visited with Mom a short while. I like to be awake for Mickey Mouse clubhouse. It’s my show. So, I watched that, got my noon medicines, a clean diaper and held hands with Mom until I dozed off again. I need to take it easy during the new changes, so it was perfect. Everyone says I have big hands...do you think so? Mom said it’s the German (Raedel) in me. I don’t care. They work...ha, ha! I like when she sits with me. We can’t do much because of my breathing tube. So, we hold hands and she sits next to my crib. We read your messages together, she reads me books and we look at each other and make faces. It’s so nice. I love my Mommy and Daddy. I can’t wait to go home so I can meet the rest of my family. Mom and Dad made the decision a long time ago that they’d limit my visitors and keep me as safe as possible from anyone being sick. It’s a little easier now that it’s summer time, because they say people are overall a little healthier, but it’s still scary. I don’t need the commotion either. There’s a lot of reasons. So, so far I’ve met most of my family only once, in Madison, when they thought they I might go to Heaven. Mom said it was hard for some family to see me with so much blood in my ECMO tubes and in the hospital; it made everyone uneasy. I understand that. A lot of the things that I have been thru can be pretty hard to look at. Since being here at CHW, I’ve only seen my Grandma and Grandpa Raedel and Grandma T. Now, that I’m not feeling the best trying to recover from everything that happened last week, I probably shouldn’t have any visitors again. It’s hard not knowing the people who love me so much. Hospital life in general is hard. It’s not home. That’s why your messages are so special when a Me and my Mom read them. It helps me get to know you. I hope you know, family, that I love you too and I am going to come home...someday. 

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Well, good night. Please keep me in your thoughts and prayers. I really need my heart gift to co e soon, guys. Hmmm...the wait is so hard. Just working hard to stay stabl-ish until my big day comes. Talk tomorrow. - Love, Heath 

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