2/8/19 - Being A Tx Kid

We sent this picture to family and friends today and everyone has said I have grown up so much! What do you think?

We were all talking today about how good I look right now and how I seem more like a normal baby for the most part. I have my medical concerns, yes, but other than that, I am just a normal little boy. I sleep, eat, play…poop. All the normal things I should do at my age. My age…that’s something Dad, especially, has come to his own terms with. He says that since the first five plus months of my life, I was on medicines that literally paralyzed me so I couldn’t move much. Then, I had a huge heart Tx surgery followed by a second open chest surgery for ECMO and then add on that recovery…I missed the first about eight months of my life. So Dad’s sense is that my life started like two months post Tx and that makes me “fiscally” much younger than almost a year old. It kind of makes sense, but I’m really starting to catch up. The core strength and muscle strength things are the hardest I think? I’m getting so much stronger and smarter ever day. When I was hospitalized they always worried about brain damage, remember?, because of all the CPR and stuff I’ve been thru in my life, but my family and friends all think that I am good. I don’t think there’s any mental delays or anything. I’m really very intelligent! I pick up on new things so fast and remember them, too.

Anyhow, we were thinking about me growing up and stuff, like I said, but Mom pointed out the stuff that no one sees that makes how I’m growing up so much different. It’s so easy to forget that I went thru everything; which, believe me, we want so much to forget it all! At least I won’t remember, because I’m little. Some of the things that Mom was talking about are things like my schedules. My schedules are crazy. It’s really pretty unfair to be blunt, but i’ll always have a half dozen strict schedules. Feeding is one of them. I eat like a normal kid my age now. I eat with a spoon and am learning sippy cups. I also get nutrition thru my G tube Button, though. That schedule means that Mom has to get me propped up in my high chair with the tray off, undo my shirt so she can reach my belly, hook up a tube to my G port, hand push big 60cc syringes of blended foods into my tummy, unhook the tube when she’s done flushing it with water, re-dress me, clean the syringes and tube, keep me sitting up for a half hour because the volume of food is quite a bit and then wait three hours and do it all over again. This stuff is necessary so I’m getting the hydration and nutrition I need while I’m learning to drink, especially, and eat. Our goal is to get rid of this whole ordeal this year. It’s a big giant goal. As you can imagine, sticking to a feeding schdule and having to do all of that in a strange place (ie. hospitals, out to eat, family gatherings…) can be a real chore. Mom always keeps me fed though. We try hard not to complain. My next schedule is my medicines schedule. Right now, we are down to ever twelve hours, which is so very nice, since we’ve done medicines up to eight times in a day before. The only thing is that to give my medicines right now and ensure they are given perfectly, Mom is the only one giving them to me. She has to do the whole g port set up to give me medicines, just like for feeding, and I have to get the exact right amounts of medicines. We also have to be sure that each time we pick up my medicines from the pharmacy that they used the exact same recipe to make them as the last time. We know the pharmacists by their first names. My medicines are so important because they are literally keeping me alive. Without them, my body will kill my donated heart. But, then again, my medicines are also bad in the fact that they are preventing my body from protecting itself. Mom says something along the lines of it’s a double edged sward. Anyhow… Then, the last of my schedules is appointments. Something that people with normal kids take for granted is not being pretty much forced to go to a hundred appointments a month. I have to get up at 4am or 5am for most of them, be in the car for 2.5hrs and then at the hospital all day most times, running back and forth from appointment to appointment, then drive home 2.5hrs. I usually nap on hospital check up beds during those days, between appointment times or in my stroller. I’m always wiped out when we finally get home. We don’t get much choice in what times we get to schedule appointments for because the hospital has tons of kids just like me and the scheduling is tight. So, you end up taking what you can get. It makes for lots of traveling. We always try to coordinate multiple appointments for one day, though. I go to so many doctors. I have my Tx team appointments for general check ups and then, labs for blood draws, echo-cardiograms, physical therapy, speech therapy, occupational therapy, gastroenterology, urology, x-rays, hearing, vision, developmental, etc… Mom has a big calendar on our fridge and a purse agenda that she carries with us so we don’t miss anything. It’s a lot of stress, but if I’m feeling good, then all the schedules are worth the effort. That is for sure.

I’m kind of rambling on now, aren’t I? I talk a lot now days. Babbling fool, Mom and Dad say. Well, that’s enough for today. Talk tomorrow. -Heath

PS. Do you love my farm boy outfit!? Mom was all giddy when she dressed me today. It’s the best! I love my hat from Grandpa. Can’t wait to get to sit on the tractor this summer.

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