7/24/18 - A New Day

I want to warn you that today there will be graphic pictures posted below that are very disturbing. Please use caution.

“But you were made to be this brave little human who does not back down to the things in life that try to tidal wave over you and force you to be small.”
— Thank you to new friend Courtney for sharing this with me...I love it!

The clot situation is still null. The care team went ahead and took every measure they could think of to try and find the stinkin' thing. They ultrasounded my body, looking thru my veins and arteries, and came up with nothing alarming. A CT scan was done to check my brain and see if it had somehow migrated there. They didn't see it. They did, however, find something else alarming. I have some bleeding around the one side of my brain. It is minor at this time and the cause is unknown, but they will need to monitor that continually to be sure it doesn't worsen. If it did worsen, it could cause lots of problems for me. It may subside, though, too. So, we hope for that. I have had more than one CT scan of my head here in the last 24 hrs and it seems okay for now. The care team re-applied the EEG leads to my head last night to be sure to monitor my brain in case of seizures. That seems to be okay, for now, too. They plan to remove them again today if all continues to look good. The EEG is used to montor my brain waves. They look normal right now. 


Hmm..what else? How about the gapping hole in my chest! Mom was alarmed to see my chest open today. It's very graphic, but I want to share the pictures for your curiosity. They will be below this post, so if you can't handle that stuff, skip the rest of this blog. Anyhow, it is routine that a surgeon leave a child's chest unsutured post transplant because sometimes, like in my case, the new heart needs a little "breathing room" for a while until things settle and swelling subsides. Should the chest be closed up, there is a little more pressure on everything and it makes the work the heart is doing just a little more stressful. So, in benefit of my heart, this time (after removing the ECMO circuit), my surgeons decided this was an appropriate measure. They plan to close everything up tight tomorrow. Hopefully this will be the last time I have to be "opened up". I am doing well, so far, off of ECMO. My numbers are good. I have my own heart rate of about 150bpm. This is good for a baby. I have my own blood pressure now, too. It also looks good. Everyone is very proud of me and happy with my new heart's recovery. It's been a real ordeal, but I think I may be doing okay now. Here are the gory pictures...

I want to thank my care team today. The last few days have been a whirlwind. Stress, fear, unknowingness...it's a lot to deal with parents going thru this, I am sure. My Mom worked in nursing for eight years and my Dad is a hunter; so that being said, they don't shy to blood and gore too easily and are pretty level headed people in general. Still, seeing their baby in the face of such cruel adversity and knowing that, the day of my transplant, the surgeons would have taken my heart out of my body...it was too much to bear. It took until today, to mellow out and start to again feel hope and begin trusting the care team again. We have had to trust them through some extremely scary situations. Their experience and caring attention to me has helped me thru some of my hardest challenges. It's not easy to swallow your pride and trust when at the mercy of strangers, but through my 152 days in the hospital (thus far) I have learned that they always have my best interest at heart. The knowledge between them all shows and has saved my life several times now. I am very thankful. My family is very thankful. Thank you so much care team. You're my family now, too...always. -Heath

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