6/10/19 - 6/16/19 - Surgery, Riding Pony and Father's Day

Well, we got news back from the doctors about my neck CAT scan images…not good. Just as my heart surgeon, whom originally looked into my vein issue, had predicted, I have somewhat severe “narrowing” of the veins around my old ECMO site. So, this means a couple things will happen now. Next coming week I’ll have a procedure done; this procedure is what we are considering the least invasive option. The team performing the procedure will take me in, under anesthesia, to the same area that my Cath labs are performed. During that time, they will go into my vein thru my groin (just like they do for my Cath labs) and go up thru my body until they get to my neck. Now, Mom didn’t completely understand exactly what will happen then, but the jist of it is that the team will then “puff up” the narrowed areas to open the vein to free flow again. This will not be a permanent fix for the problem (because i’m growing) and I will have to have this same procedure repeated (we are planning for my next cath lab if all goes as hoped). So, this is “simple” but risky and another anesthesia bout, unfortunately. Mom is pretty upset about it. Not only did I just go thru so many bout’s of anesthesia this year so far, but now I have to essentially have a second cath lab done. This could have been preformed at my last cath lab, had people been “on the ball”. It’s frustrating sometimes when you’re at the mercy of so many medical professionals…although we love out team and they are so amazing, sometimes ”too many chiefs” is what she says. Hoping and praying that this procedure will go well and that I will be okay. It’s very scary. Very. I will be admitted to the CICU this time, too; at least over night. None of us want to go back to that floor. Although I got to leave there and come home, it’s full of so much pain and fear and trauma. They don’t allow little sisters to stay there in the room with me over night, either, so Dad is going to stay in the room with me over night. Mom is sick about leaving me. I am so tough though. I’ll be okay. My bro dude is working that day, I found out, and I’ll get to see some of my old girlfriends. That will be nice. We keep in touch with some of them. Anyhow, now if the procedure we are talking about above doesn’t work, the next step is my heart surgeon and his team will have to move/reroute/remove/manipulate the vein/area to make it better. This would be a big deal surgery. We don’t want to get to that point. So…those are the options to start. Please pray, again, so hard for me. That I’ll be okay, things will heal and work well and that I will come home safe, happy and healthy. What an ordeal. We are so thankful for my health and that I am the way I am. There are so many people that don’t have it as good as we do currently, but that doesn’t make things like this (surgeries, appointments, etc…) any easier. It’s almost harder in a way because you get “out of the groove” of constant appointments and visits. Families like mine learn to control their emotions and “bite the leather” thru situations, but when you come up for a breath of air, it’s hard to make yourself go back into that mindset without some pain. It will all be okay. I will be okay. I’ve got this! Just a wee bump in the road! Okay now, onto the good stuff…

This week I have been doing a lot of reading with Mom and Grandpa. I read my Ranger Rick books that come to my PO Box from angel Ellen. They are my favorites at the moment. I love animals. I love the bright pictures and turning the pages. We always re-read them a couple times. We also read my other books from my bookshelf. I get to pick them out. We sit down in front of the books and I grab a couple and we read them. Then, at the shop, when we are working with Grandpa, I get to read the newspaper and magazines about farming and machinist stuff. I’m learning a bunch! I did fall asleep reading some junk mail in the “boss man’s chair” the other day at the shop though. Mom let me sleep there for over an hour. I woke up all happy and refreshed. I liked it. We have been trying to start something new every week at home here. This week, I started riding my first pony. He’s very handsome and makes me laugh. Like, really laugh! I belly laugh so hard when Mom winney’s for him. Then, I have been sitting on his back. He doesn’t buck me. We just walk right now. I can’t balance very good, yet. I’m learning. Mom says that this will help me learn to stand. I’m trying all kinds of new things to help try to do that; stand. I want to do it all by myself someday soon. Then, I can follow Mom around and stalk her. He, he, he! Hope you all had a great day today. It was my Daddy’s second fathers day! He played with me; ball and taking my toys out of the basket and my tractor…it was great. Happy Father’s Day to all the daddies that read this. Okay, I have to go now. Talk soon. - Heath

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