6/24/19 - 6/27/19 - They Thought I Died

Wow, where do we start with this post? The surgery…I went in Monday morning and went into surgery shortly after we arrived. The procedure lasted a couple hours and then I was admitted to the CICU. The surgery had went great. They vein issue was resolved (from a “kinked hose” to now a free flowing hose). I had only had to stay over night because they had given me a dose of heavy blood thinner for the night. I also had a lot of extra fluid on me from anesthesia and they wanted to see me loose the fluids before going home. The dreaded CICU. It was my home for almost the entire first year of my life. Although my family and I love everyone there and appreciate the amazing things they did for me, saving me multiple times, we did not want to go back. It was really hard for Mom to see me when she came into my room, hard for Dad to see Mom and hard for me to see and heard the beeps and lights. I remembered them. Kenna was sleeping in our stroller, so Mom held my hand, like we used to do here and cried. I was okay, just waking up from the anesthesia. There was something alarming the minute Mom saw everything in the room though and she got pretty bold about her opinion on it…Dexmedetomidine. She asked the nurse why the heck (literally) they were giving it to me and they said to “keep me calm for a few hours”. It made Mom instantly very angry and she asked them to immediately stop it; which they did end up doing. I have had about a half dozen procedures, now, post Tx and i have never needed to be sedated after any of them. This was NOT necessary and was frankly just the easy way to keep a toddler calm. I just need my Mom or Dad, my blankie and my book, and I will be a happy camper. I’ve been thru much worse than this surgery. Then, shortly after, when I had woken up pretty well and the medicine had worn down, we went down stairs for a quick Echocardiogram. I was still a little whoosey, but I was probably okay to go do this. We went into the room for the Echo and I don’t know what came over me; just the difference between Mom and Dad holding me and things being out of the normal maybe (i’ve never been good with change), but I felt really upset all of a sudden and began to cry. Mom was with Kenna in the hallway waiting. Dad was holding me. I couldn’t stop crying and the nurse was waiting for me to lay on the bed for the pictures. Dad tried so hard to comfort me, but I didn’t feel right. I wasn’t scared, or mad, or even really anything…I just felt out of sorts. I cried and cried and then I was so upset I couldn’t catch my breath. I heard Dad saying “He’s dead! He’s dying! Help!” and then…everything went black… When I woke up, Mom was holding me, desperatly pleading to me to wake up. She was sweating and crying so hard. It scared me. I was awake now, but atill waking up. There was about thirty people in the room now and a man on the loud speaker canceling a “code blue”. I think Dad was in the hall with Kenna now. He was looking thru the door at me, i remeber. He was scared looking. Mom wouldn’t look at anyone and was holding me so tight. We were in that room for such a long time. They thought my heart stopped, all the people rushed in…but in the end, I just had gotten so upset, I passed out. It was absolutely because of the Dex. Mom carried me all the way up stairs to my room. She wasn’t letting me go for anything. I think her heart was the one that stopped…or Dad’s. As a family, we have been thru so much and this was more than words can describe scary. I was okay though. I just passed out, went limp, and scared everyone. I sat in my crib and Mom and Dad held me while the team checked me over again. I was okay. Kenna was sleeping thru all of this. I’m glad she didn’t see me like that. Wow…what just happened. The day wasn’t over yet, though. After that drama, there was new drama. Ugh. They (the hospital) wouldn’t let Mom or Dad give me MY medicines from home. They wanted to give me new medicines from the pharmacy for one night. Not a big deal? Wrong…big deal. Remember how I had to go get blood draws twice a week (that’s ten hours in the car in a week!) for over a month just to get my medicine levels correct? Well, the cause of that chaos was a medicine change… So, now changing me medicines UNNECESSARILY over night really had Mom and more so Dad now, up in arms. Always worried about liability. We couldn’t resolve this with them and I had to get different medicine. Mom went home for the night with Kenna and to take care of the animals at home. She was going to bring my bottles (the whole issue) of medicine in to give me in the morning and avoid a second “mystery formula” dose from he pharmacy. She got there at 7am the next morning, my medicine is given at 8am…they wanted to label our bottles and scan them into their system…we didn’t get my medicine back until almost 9am and I got meds an hour late! We were so upset… Late morning, I was able to go down and get the Echo done that we didn’t finish the day before. After, we finished that, I was allowed to get cleaned up and dressed to go home. We couldn’t wait to go. We love our hospital and it’s full of amazing nurses and doctors, but this was a traumatic and stressful experience to say the least. Lets go home! I couldn’t tell you how happy I was to just sit and play in my living room when we got back. I slept so good in my own bed that night. I’m doing great now. I was a little sore, but I’m back to normal and happy. -Heath


Here’s a before (left) and after (right) of the vein we changed. It’s still big, but it’s not bulged up and kinked anymore. I’m safer now that it’s been fixed. As I get bigger, this will become less visible.

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