6/29/18 - A Berlin Heart

Today started out a nice day. Mom and my girlfriend gave me a good, long, warm bath. I loved it. I felt so fresh and clean after. My hair is getting pretty long and we can make curly cues and a mohawk! I have strait hair, but when it's wet, its fun to make it go up and curl around. My eye feels a little better today, too. I was happy about that. It was nice to have my stickers off and get to rub my head and eyes with my hands while I got cleaned up. I am so interested in how my face feels. It's such a weird thing? A head. It is like a ball on top and is smooth and hard. Then, when I run my hands down lower, my eyes and nose are just suddenly there and they are like weird wet holes. I love to put my fingers in my ears, nose and mouth. It doesn't gross me out. Mom doesn't always like when I explore, but i don't care. I do it anyways. Here are some pictures from my bath. I was SO cute!

I had some Morphine, just before my bath, and was in a good mood. We thought it would be a good idea to take advantage of how calm I was and see if sitting up with Mom would be a good idea. We got up and all situated, but I just couldn't get comfortable with her holding me. So, we gave up and I just laid back down in my crib where I could be comfortable. Mom and I still had a nice time visiting. She looks at me like I'm the best, most special person in the whole wide world. It makes me feel so good. 


I have to tell you the bad news now... As you know, I've been having some struggles recently. It's been a ride, let me tell you. I don't know which way is up any more. One day, I am down and out with Pneumonia, high heart rates, high temps. The next day, I am smiley and my numbers are good. One thing that has been getting worse consistently, though, is my heart. Specifically, the pressure in my heart. The care team is very concerned about how my heart failure is progressing. It could be just time getting to me or the fact that I am growing up and getting bigger (my body is asking for more than my heart can do). My kidneys, liver, lungs, etc...all demand a lot from my ailing heart and when they can't get what they demand, they don't function well. So, to prevent further damage to my other organs and to prevent an emergency situation, we are going to make a big change. This big change will hopefully keep me eligible for a heart transplant, too, by helping to keep me in the condition I need to be in. 


We plan, on Monday, I will go to surgery and get a Berlin Heart. A Berlin Heart (pediatric ventricular assist device) is a mechanical cardiac support system for critically ill pediatric patients suffering from severe heart failure; like me. The device is designed to support my heart/body until my heart transplant happens. They call that BTT; bridge to transplant. The device takes over the heart's work of pumping blood to my body (in my case, just my left ventricle for now). Since it helps more efficiently supply blood to my body, it should help my organs to function properly and even help improve them. They say it can make me an even better candidate for transplant because it can help my body be stronger. It sounds like ECMO, in some ways, but it is very different. A Berlin Heart is something designed to provide long-term support and help me get to my transplant date. ECMO is ment for more short-term support. The Berlin Heart is smaller and I should be able to move around and not be sedated/paralyzed, like I was on ECMO. If all goes well, while on the Berlin Heart, I may be able to come off of some medicines and maybe even get the ventilator tube out. That would be a good thing. It's not all rainbows and unicorns, though. I will get worse again, before I get better. I will have some recovery to do after this surgery. It will be hard and I am scared. My family is scared. There are also, risks that the Berlin Heart brings...the obvious risk of infection, increased risk of blood clots, and one of the scariest risks being the 1 in 5 chance of a stroke per patient statistic. That makes my Mom cringe. One of her worst fears in all of this, the life I'm living, is that I won't get to be my "own man" someday. She prays hard every night that I won't end up dependent on them or anyone else thru all this and that I can live my own life, happily, someday. So, Monday, I will touch base and fill you guys in on everything in much greater detail and let you know how my surgery goes. Please say extra prayer for me this weekend. I will need the extra love to get thru this adversity. Good Night. - Heath

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