7/22/18 - 5 Months Old

I'm celebrating another milestone today...5 months old! I am almost a half a year old already! Can you even believe that? WOW! Mom read to me your messages first thing today. We had a lot to read, which was nice. Although reading books is comforting to me, hearing prayers and stories from my friends and family is what really keeps me going. I just listened and wiggled my toes. Mom thought I was maybe dreaming a little bit, because I kept raising my eyebrows and then I'd give a good kick. It's comforting to know I can still kick and wiggle after all of this. It was messy there for a while. It still is. I think there is seemingly more hope now, though. 


I came out of my surgery rough and today we had some promising things show up. A few of them are even quite signiicant to my right heart function improving. My triponin levels have decreased significantly since my surgery. Certain subtypes of troponin (cardiac I and T) are very sensitive and specific indicators of damage to the heart muscle (myocardium). When there is damage to heart muscle cells, troponin is released into the blood. The more damage there is, the greater the concentration in the blood. So, its good that my levels have decreased. It means good things for my new heart. Another good thing that happened today was that they decreased my heart pacing machine settings. So now it is only pacing some of my heart function. This means my heart is firing more by itself. They also said that when they turned the machine off to check for the rate of the underlying heartbeat, that it seemed good. So we are happy to hear that.


ECMO is going well so far. It's never a good thing to stay on ECMO long, so i hope to be off of it soon. I'm not on the paralytic and they were able to remove the EEG leads from my head. That's why my hair is all oily. Hopefully tomorrow or Tuesday will be enough rest, I'll come off ECMO and we can get the ball rolling towards me getting strong with this new heart. We do have to work on fixing up my lungs. Especially my left one. So, that will also take some time. I guess that it is somewhat collapsed because my heart isn't allowing much space for it right now? I'm not sure. A couple doctors tried to explain it to us today. I've never had any lung troubles like this pre-surgery, so it's concerning that I am having trouble post. Hopefully, with some time, they will strengthen. The care team re-adjusted some ventilator settings and the last time they suctioned (cleaned) out my ventilator tube, it seemed there was minimal blood coming up with my secretions. So, we hope things are better without looking again with another Bronchoscopy. 


There is still a lot going on with my health. It's a scary time. We hope and pray for the best. I think I'm in good hands and that things may be on the up-n-up? It's so very hard to say. I know Mom is struggling a bit with trusting everyone after everything. She's like that though. Dad, well...he is just in Dad-land and thinks I am perfect. We sure didn't expect all of this devastation, that is for sure. Every transplant story is different...this is mine. My family is holding onto hope that I can still do well with this heart and that it will heal strong. Please continue to pray for me, for my family and my donor's family. We are all in a world of uncertainty right now. It's a hard place to be in. Thank you for all of the pick-me-up messages. I know that I am just little, but hearing from you makes me so happy. I like listening to my mobile music playing, but your messages are much nicer to listen to. -Heath

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