5/11/18 - Binky

Well, yesterday was tough and although I still have a fever and they aren't quite sure where the infection has come from, today was a little better. I got some Tylenol for my fever and a little Morphine with it to help everything. I get the Tylenol other babies get, but they give it to me thru my NG tube (the tube milk goes thru when I'm being fed) and it goes right into my tummy. It helps and I was pretty comfortable today for the most part. I was zonked out most of the day from the medicine, but awake a while to visit with my Mom. I liked my nurse today; she understands me. She doesn't let me get away with much, but she always talks to me and makes sure I'm very comfortable. I appreciate that. 


I told you that they haven't decided the location of my infection exactly. That's why they have me on a broad spectrum antibiotic for now. So today, as a precaution and to investigate a little further, my care team ordered an Echocardiogram be done. This is what it looks like. The technician holds a wand (similar to that of an ultrasound machine that you may have seen at some point in your life) and runs the wands head against my chest to see inside and look at the function of my heart. You can see my heart on the screen there. She was looking at the chambers and more specifically, at the valve function inside my heart. Sometimes, when there is an infection in heart patients, something called Endocarditis can pop up. It is an infection of the endocardium (the inner lining of your heart chambers and heart valves). Endocarditis could happen when bacteria from another part of my body (such as my mouth) spreads through my bloodstream and attaches to damaged areas in my heart. It's serious and can damage or destroy my heart valves. It can be treated with antibiotics if we caught it early. They haven't told us that is the case yet though. It might not be a thing. We will know more when labs come back and after a doctor looks over the Echocardiogram photos. People like me are at a greatest risk of Endocarditis because my heart is damaged. I'll be able to tell you more soon. Please pray that I don't have this going on. 

I also had an ultrasound done on my arms and legs today to check for blood clots, but that seemed to look clear. So, that's good! In other news, I tried out a binky today! My entire life, I have had a breathing tube in my mouth...so, now that I don't anymore, I can have things in my mouth if I want. Mom and my nurse took turns teaching me what it was for. They held it up for me and I just licked it a couple times with my tongue. They laughed at me. I did figure out, after a few minutes, that I am supposed to suck on the thing? Very interesting thing, this Binky. I got the hang of it I think, but I'm not quite sure I like it just yet. I think I need more practice. 

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