8/7/18 - My Broken Heart

There will be a picture of my heart (my old one cut up for biopsy) near the end of this blog. Please be warned, if that stuff bothers you...

My day...perfect. I didn't do much, but what I did do was snuggle with my Mommy for hours and then nap cozily in my crib. My renal numbers look good. Changed the patch. The care team has a bunch of things going on and planned for me all week. Today we weaned the fentanyl down some today and i seem to be tolerating it well. I also went down on my O2 settings again and am feeling good about it. Tomorrow I have an Echocardiogram planned mid-day to look at my heart and check that clot in my heart, too. Please pray that the clot is breaking up safely and that it has not mobilized. Also, pray that my new heart's function is still doing well. Then, Thursday is a big day. I finally heard back from ENT and they picked that day for my vocal cord repair. Well, hopefully...they will first take a good look and decide on the best course of action. I am hoping the collagen injection will do the trick and I wont have to have it surgically repaired. If all goes well and as planned, I can try out NG feeds again and work towards normal eating someday. Plus, I will sleep better, be much more comfortable and be safer with it repaired. So...big things! Next week will be an MRI to reevaluate the bleeding issue in my head. Hopefully that has dissipated and I am okay. Safe. The care team thinks that I'll probably continue to have my Lovenox (enoxaparin sodium is an anticoagulant medication) injections daily for at least a few months; i'll likely go home with them for a while to be safe. Hoping and praying for the best. I feel really good this week so far though. I love feeling good. I smile so much, play and am just feeling so much more like a normal baby. Once you see my old heart, below, you will understand how much i needed my new heart. My donor gave me something so special; I needed it 100% to survive. 


So the heart picture below is a biopsy on my heart...specifically the left side of my heart. The top picture shows mainly my left ventricle. The white tissue is all scaring. The bottom picture on the left is the top of my heart and the right is the bottom of the left side of my heart (the tube is a piece of tube left from my Berlin Heart LVAD. So, like I said, my old heart was in rough, rough shape. If you can imagine this...you smile, okay...when you smile you use muscles to make the face shape. It's easy, right? Now, imagine your lips and face are covered in deep thick scars. Now, try to smile...not so easy. That is what my old heart was going thru. It could not...literally, could not do the work. Now...where did the scars come from? Well...the heart is a very complex organ, but to be very vague...my heart did not get enough blood right away after I was born, it had electrical issues, it went through ECMO (twice) and a Berlin Heart LVAD. My heart went thru hell. It got so beat up that it couldn't recover. No amount of time would be able to fix all of that damage. So, we feel so much better seeing this, getting my diagnosis from the biopsy for all of my problems and now moving on to my future as a transplant recipient knowing this was the right decision for me. Coronary Ostial Stenosis is a very rare condition of unknown etiology (cause). Studies say that only between 0.13 and 2.7% of the population are effected by it and usually adults. It happened to me though and it basically killed my heart by starving it of blood and in turn starting an uncontrolled chain of events. I fought thru all of the adversities I faced and actually lived thru it. Beat it. Now...I am here and thriving! This picture is an odd one to see, but to my family and I it means we can breath lighter. We are thankful. Good Night. -Heath

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