Another good day!

Arrive at Peds. Nurse we have never had.  starts eye drops for exam. They start an hour before appointment. Good night and morning it seems.

Weaned oxygen to .25 liters per minute! Which equals about 27% oxygen!

Changed from continuous feeds to a long bolus. Instead of 20mls/hr he will get 30mls/hr for 2 hours with a 1 hr break. We will slowly make the blouses larger and the breaks longer to mimic eating a meal! Back a month and a half ago we were on 30 minute bolus feeds.

Eye doctor arrives 2 hours late 3 hours post eye drops. Eyes still dilated. Dr apologizes. This Dr. has not ever seen RT’s eyes, our normal one is in India for a conference on ROP. Does the eye exam,  says no ROP. I point out he didn’t have Rop last week only plus disease, she says oh well the right eyes blood vessels did look different than the left, but no plus disease…

RT did not desat during the eye exam!  His heart rate hit 230 thigh because of how angry he was.  More full than RT has been in a while,  and more upset t9o! No reflux though for now! Good job RT!

So hopefully that means the injection of Avastin is making it regress!

RT is more fussy today but still doing awesome.

High satting 100%spo2. On a quarter liter flow.

Fussy because of eye exam,  needing to poop, weaning off morphine, hernia,  or something else?

Nurse changs to a 2nd day nurse we have never had.

We both held him today,  nice to be able to pick him up whenever he wants.

Grandma flew in today!

Meet her for dinner,  then back up.

Shift change,  Another nurse we have not had.

RT is still awake.  Diaper change, he doesnt settle down, gets fussy and farty, bearing down, high heart rate. I call the nurse and he gets a suppository. He poops after 15 minutes, I give him some time.  He gets angry.  Change him again,  hold him he calms down then keeps looking for his binky.

Nurse comes, offers milk to dip his binky in.  I give RT two dips for the first time in almost a month and a half.  He loves it, settles down and a few minutes later is asleep.

I wait 30 minutes then put him back, wait 25 mins, get ready to leave for the night. He knows I’m about to go and wakes up,  binky,  he settles back down I put him in his momaroo. Hang out,  he is asleep and comfy looking

2330. Back to hotel.

He was more fussy than Normal, maybe just frustrated with sucking a binky and getting nothing when he wants his belly full.

Love you,  see you in a few hours.