7/31/18 - Shedding Layers

A new friend of mine came into my life when my journey came to CHW. Her two babies both underwent heart surgeries here and she has be a true God-sent to my family during all of my adversities. They sent me a very special gift today...a Build-a-bear Bear. He is fluffy, fuzzy and soft and wears a surgeon outfit. I love him so much! A new snuggle buddy. When I squeezed him, his heart started beating...just like mine. A very special gift that I will forever cherish. A long time ago and now again, this friend told my Mom something she says is one of the most beautiful ways she's heard this all put into words...this new friend told her, when talking about me, that "...he will begin shedding his layers and all that will be left is your baby...". She meant that I'd shed my medical devices, medicines, tubes, cords...all of it and what will be left in the end is just me; Heath. It really is beautiful, Mom was right. It's beautiful to know that in the end none of this is permanent and I am still me. My layers change, but I am still little Heath under it all. I can't wait to shed my layers and be free of it all. I lost another layer today, acutally. Bye, bye head patch! Yesterday, I got rid of the arterial line in my hand, too. 

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So, now an update on me. I am about 13lbs now. I am starting to puff up because of the steroids I am on for my transplant. There's something called Prednisone that will make me moon-faced, they call it. Prednisone is a man-made steroid that is used to suppress the immune system and help with inflammation...but it makes me puffy? I don't have to take it forever, just until my body is okay with my new heart. So, puffy Heath for a while. Can't change it. I am feeling well. My new heart is happy and doing it's job. The doctors say they are liking the results and my numbers and all. They said that the new heart is maybe a little "stiffer" than they'd like, but not to worry about it right now. They will do another Echocardiogram Thursday to check on it. My lungs seem to be doing better. They still have me on O2, but it's not too much. I am weaning off my medicines thru the IV's and switching over to getting things into my tummy instead. This will be necessary for going home someday. I am almost up to full feeds now too. I still get them thru an NJ, which is not ideal. I need to get my paralyzed right vocal cord fixed before they start switching my feeds back to my tummy. It's too much of a risk of me aspirating now, with the bad vocal cord, to switch. Hopefully, in a couple weeks when I go to do my first Cath. Lab, the team will also take that opportunity to go ahead and fix my vocal cord. I think they plan to try to inject it with something similar to lip filler stuff? I guess it will theoretically help it. So, I hope it's that easy of a fix...otherwise there will be a surgery to repair it in my near future. Ugh. A Cath. Lab appointment is apparently when they will check my heart for signs of rejection? I've never done it before, so we don't understand how all that works yet. I think the care team plans to do that in a couple weeks. Hopefully it's no big deal. I'm sure they will fill us in more about what the appointment entails before hand. I could possible go home in as little as a month, after the Cath. Lab for sure, but it's completely overwhelming and exciting to think about going home! Wow! I have a lot of hard work to do first though. I have to get my medicines all orally, i have to be able to be fed normally (they sometimes send babies like me home with an NG tube if it's not going well with normal feeds, just so I get the right nutrition), and I have to be strong; my heart has to be okay. So, I will be working super hard, over-time for the next few weeks to get strong! 

Also, today I laid onto my tummy on my Boppy...well, kind-of. I was feeling very restless for a while before we tried this. I am weaning down off of medicines right now and it's not easy...I'm an opioid addict; no joking about it. So, the Methadone that I get to help me get thru withdrawls, etc...it just isn't the same feeling. It's not something I would wish on anyone. I am doing okay though. I'm very tough and brave. So...anyhow, I was restless and my Mom and girlfriend thought I could try a new position. I had my knees tucked up under me and my arms out over the Boppy, resting my head in the middle. Out like a light in 30secs! It was fantastic! I slept for a good 45 mins. like that. I'm excited to try it again soon. I had a therapy session after I woke up. As much as she was excited for me to get some tummy time, I guess that because I have pacer wires still (non-functioning), the care team may frown on tummy time. So, we are going to ask about that just to be sure. I think it will be okay though. My numbers were all very good for the whole time I was on my tummy. I'm so glad. Hoping for lots of new experiences soon! Please continue to pray for me, my family, my donor family and my little sick girlfriend down the hall. Hugs! -Heath

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