8/6/18 - Waiting On ENT

It's been a great Monday. I think tonight should just be a short blog with a few quick updates...


First, my Grandma was here today. She held me a while and we caught up. She hadn't seen me since my heart transplant and was happy to see how well I was feeling today. I enjoyed to visit. She brought me a bear. His name is Jasper. He's got a different texture to his fur compared to my other friends. I like it. Anyhoo, when we were done, I went back to my crib for a nap. I actually fell asleep quickly and slept the rest of the afternoon sound in my Boppy. I think the socks helped? Ha, ha. I actually like socks on. They keep my toes cozy. Socks are toe sleeping bags. He, he, he. I slept stretched out and spread eagle today. It was fantastic. 

Today the care team decreased my Fetynl drip and are watching my renal numbers. They appear to be low, but we hope it's still a patch issue. They will hopefully get on top of it tonight. Speaking of getting on top of things...ENT. The Ear, Nose & Throat people here are hopefully coming to take a peek at my vocal cord situation this week. We still haven't heard back, but I guess there is an un-dated Bronchoscopy scheduled for me? Mom and Dad really want this taken care of sooner than later. The care team does everything in the order they feel is best, but Mom is nervous they will just "settle" on sending me home with an NJ type feeding tube for convenience. That's not what they would do, but it's still a thought in my parents heads. Hopefully they stop putting off fixing it and at least try something. Once it's fixed up, I can try getting feeds in my tummy again and that is SO very important to me and my familly before I go home. It's more normal...you know? So, we hope that gets rolling this week. 


I think that's really all for updates today. Please continue to pray for me, my family, my donor family and send little extra prayers to my girlfriend down the hall. I'm going to rest until my girlfriend gets her for the night. She'll read me some of my new books from my new friends. One is called "The Wish" and it's a very special book for me. Talk tomorrow. Good Night. -Heath

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