Porter was so excited for Friday that he decided to get up at 3:00am and really wasn't interested in going back to sleep until 7:30ish.  Mommy however was not on board with his grand plan but he makes the rules these days so what else could I do but pick him up and sit with him.  His heart rate was lower than yesterday and he wasn't working as hard to breathe which was good.  He was still pretty agitated so I asked the nurse for some tylenol to see if that would help.  It looks like a tooth is trying to break through on the bottom so I'm sure that is not helping his agitation.  Porter fell back asleep and I went for coffee.  He remained pretty comfortable today.  I changed his outfit twice because he sweated through them.  He dropped his HR into the low 60's about four times today but recovered from that quickly.  I spoke with the heart failure doc and they will be transitioning Porter off of his propafenone and onto soterol - these are meds for his arrhythmias. They are not able to increase his propafenone without doubling it and with his increased arrhythmias lately it seems best to transition him onto something else.  They will be moving him up to the CVICU (cardiac ICU ) for this transition so they can monitor him closely.  The doc asked if Porter gained any weight overnight and I told him YES!  He went from 4.88 to 4.98kg.  He chuckled and said ~ well better something is better than nothing.  Hopefully tomorrow he'll be at the 5kg mark.  We discussed the myectomy again and he is going to be discussing it with the surgical team again.  He is concerned with Porter being so incredibly under weight with doing the surgery yet (he's not on any growth charts not even the Noonan's growth chart) so they are trying to beef him up.  He wanted to increase his feeds again but the nutritionist really wants Porter to coast through the weekend and make sure he is comfortable with the volume before changing it again.  Hoping for no phone calls tonight an no surprises in the morning.


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