Amelia has stalled once again. They weaned her down to 1 3/4LPM and 45% FiO2, but she was de-satting to much and too often, so they threw her back up to 2LPM. Now she's consistently on 55-70% FiO2. They have a new order to keep her on her back at all times, instead of letting her sleep on her belly, and it really affects her breathing - the small tracheomalacia hinders her just enough to make it aggravating. It quite noticiable the difference, too. Last night, she was bouncing between sat levels of 80-85 for several minutes, and finally stood on 80. (They want her north of 90). When she didn't come up, I picked her up, sat down and let her lay on her belly on me. Within 10 seconds she sat at 96 and was between 92 and 98 for the next 3 hours while she laid that way.
Nevertheless, the doctors won't budge - even with all the nurses and NNPs trying to plead our case. Until she can roll over, that is. Of course, since that probably won't be until she's 2, I think we can throw that stipulation out the window.
Another factor was her diuretics' cut off. Since they DCd 2 of her chronic diuretics, she got a little fluid, and it combined with the malacia to aggravate her breathing issues. Yesterday, they decided to give her lasix every day instead of every other day (though at half doses, so her weekly amount is the same) to try and offset the loss of the other 2 diuretics. We hope that helps.
But it's looking like my hope for a V-Day homecoming will not come true unless something turns a 180 in the next few days.
She is happy and playing whenever she's awake. She smiles at all the ladies who come to talk and play with her and a lot while she's sleeping/dreaming. Her early morning wakefulness (4am like clockwork) is well known throughout the NICU, and the night time nurses in other pods and areas have a tendency to come around there hoping to get some playtime with the princess, which she provides to all comers. She especially like Xina's fake sneezing trick, which makes her laugh and flail her arms in enjoyment like nothing else. She doesn't seem to smile a lot at me - but then, I don't smile at me, either. I'm much funnier vocally, so when she is old enough to understand my puns, I'll be hilarious. ;)
1 comment:
Dear Todd,
Dad's are so underappreciated, and you're no exception. Our own children never do seem to get our sense of humor, that is until they are grown. She is probably just perfecting her poker face. Keep at it, she will finally give in and reward you with that smile you are working so hard to get from her. Love Grammy
Post a Comment