4/30/18 - That Light Thing & Milk

Hi guys! "That light thing" that you ask me about is a pulse oximeter. It is a small red LED light and an infrared light that shines thru my foot and bounce around in my blood, shining thru and not thru oxygenated cells. The light gets absorbed differently in the blood that is loaded with oxygen and the blood that is lacking oxygen. Oxygenated hemoglobin absorbs more infrared light and allows more red light to pass through. Deoxygenated hemoglobin allows more infrared light to pass through and absorbs more red light. That is how it measures and monitors how saturated my blood is with oxygen and also picks up my heartbeat so they can read my pulse. It's just simply a light taped to my foot and it does all that. Pretty kool! I like to learn about all this stuff. Mom tells me all about it. 

 This is my heart on 4/27/18. Read more below about Idiopathic Dilated Cardiomyopathy...that is my vague diagnosis. 

This is my heart on 4/27/18. Read more below about Idiopathic Dilated Cardiomyopathy...that is my vague diagnosis. 

I got to have more milk again today! Back up to 20ml every three hours. It is still much less than I should get at my age and size, but I will take it! It's about all I can handle. I wanted to talk about what the doctors say about milk and why they want to make sure I get even the tiniest amount when they can. Also, why I can't tolerate more right now. Breast milk is the perfect food for my growth and development needs; it’s easier to digest than formula and also has lots of good antibodies that could help me fight infections. Breast milk is the easiest thing for me to digest. I guess it digests pretty easily...that means less work for my weak heart (that has to supply to oxygen/blood to support my digestive system) than if they were to try to supplement with formula instead. When I was in more critical condition a month ago, the doctors think my digestive system took a hit. So, now when I get more to eat than my body can handle, my heart rate, renal numbers and breathing change and I sometimes even urp up my milk, too. When that happens, they have to stop and try again. It's hard to know what just the right amount is that I should get. I don't know...it's complicated. I seem to be growing okay though. That's good! Remember, also, that I am still getting those fats/lipids thru the IV (these give me calories to grow)? Well, since I've gained weight now, and since they can be kind of hard on my liver to keep getting, the team here is going to change them to something else tomorrow...something similar but not so hard on my body. In a perfect situation, I could just have milk. So, that is that ordeal. Today, I got that 20ml and snoozed while the pump pushed it thru my tube to my belly.

I had a nice day again. I'm getting better at controlling my moods, I think. I still get mad at the tubes sometimes, but I'm trying really hard not too. The last week or so I have tried so hard to let the nurses and Mom and Dad help me when I'm upset. That is so much better than getting medicines. I've gone 8-12 hours between getting extra Morphine or Adivan lately and that's a record for me. They still have to worry about my heart and do the best they can to keep my heart rate down and renal numbers up. We have to protect my broken  heart until my new one comes. What else did I do today? Oh! I had my hands out and was exploring and I came upon something odd in my bed that Mom put there...it was soft, hairy and I could squeeze it. It was my duck! I forgot that it felt like that. I like textures now. That's new. It's neat to feel the snaps on my shirts, the fuzzy stuffed animals I have and sometimes the ladies give me things to hold and feel. I think I like soft, fuzzy things best right now. I like to pet them with my fingers.

It's getting late now. Night night everyone. 

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