5/16/18 - 210


Everything started out nice today. I was in a wonderful mood. I feel a little better today, i think. The care team here seems to think so, too! They even increased my milk feed to 8ml every three hours. It's still a very small amount, but I'll take it. Most of the morning I watched my mobile, listened to Mom read to me the letters from you guys and then she sang to me a while. We sang "Fly Me To The Moon" today. I very much enjoyed that song. It's a little uppity, but still nice to listen to. I was tapping my fingers on Mom's wedding band and listening to the tune; thinking about my toes the whole time and how much I enjoy poking them out thru the holes in my blanket. We had a great time visiting today. 

The average, normal, resting heart rate for infants 1 to 11 months old is 80 to 160 beats per minute...later in the afternoon today, just before Mom left to drive back home, I got my heart rate up to 210 beats per minute. I get mad; well, I used to get madder before; I used to fight with my ventilator tube much more than I do now. I don't really know why, but today I got pretty upset with that and everything else. I guess it was due time I had a fit. I've been thru a lot the last week or so here and have really been such a gentleman. I can only take so much though and some days are just harder than others. I wasn't having the roughest day, but I kept getting bubbles coming up in my throat and my ventilator tube was gunky. When that happens, the nurse have to suction the gunk out. I don't like to be suctioned...it makes me upset. So, my nurse and Respiratory Therapist tried to clean the junk out of my chest to help me feel more comfortable; it made me mad and then madder and madder. Sometimes, I can be inconsolable. When I'm mad like i was today, Mom gets very upset and scared. I don't like to scare her. It worries everyone. I could have a stroke or heart attack. Some normal symptoms of heart failure (that's what I am in...heart failure) are rapid breathing, clammy sweating, poor appetite, poor weight gain... Getting so mad, I get my heart working overtime, breath so fast I can't keep up and fight my ventilator and I get very sweaty. All this usually results in me having a temperature, urping up my most recent milk feed (giving up those much needed calories) and then usually having to have a PRN (Morphine or Adivan) to calm me down. Everything falls apart when I'm mad. It's one of the things normal babies can do and I can not...be upset. I have to keep my kool and be calm to protect my heart. I was exhausted after all that. I rested the rest of the day. 


I did settle after the PRN medicines hit me. I was able to relax and fall to sleep so my body could recoup after the stress of all that. I was sleeping when Mom left and she called back later to check in on me and I was still asleep and cozy. I am okay now. We all have breakdowns sometimes, don't we? Well, tonight, please pray I have a restful night and sleep well. Pray for my heart gift to come very very soon. Pray for my family and for my someday donor's family. Talk to you tomorrow. 

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