Lots of secretions and CPAP

Secretions and CPAP just about sum up Maya's state of being currently, and boy I did not expect this anatomical change in Maya to be so challenging for me. Maya is doing well and her energy is about normal, but the poor girl has to put up with me suctioning her mouth and suctioning her nose and forcing CPAP on her over and over and over again...it is a shock that she forgives me and still yearns for mommy snuggles and attention....the truth is she handles it all from me way better than nurses or doctors, and for the most part she is breathing comfortably and is relatively happy. I am just overwhelmed at all her care...it reminds me of early baby hood life with Maya...needing her at least in ear shot so I can hear if I need to attend to any choking on unmanageable secretions and not being able to take her anywhere public. I must remember that this is a season and it hopefully won't be this way forever. Maya has heart surgery scheduled for March 22nd and until then Maya is in isolation...happpy to have healthy visitors, but otherwise we are getting VERY comfortable at home all day long. My mom will be out to help every other week until surgery so that the little girls and I can escape from the home, drive to preschool, go to the Y, go to the park, or go grocery shopping...or who knows maybe give Dean and I a chance to talk. We wake up and he is off to work, he comes home and it is family time, then bed/ CPAP time and somewhere about midnight I hand off Maya to him and go to bed while he listens for her (I cannot get any sleep listening to Maya, so I am so grateful that Dean can). I am pretty weary and discouraged, and am grateful for my optimistic hubby (he is taking this all in stride and is very proud of Maya and thinks she is doing great without her fistula (hole))...we will just have to wait and see what the future holds, and it is impossible to make any predictions at this point. We are grateful that her stoma is closed and heart surgery is just around the corner. As for now, Maya does not have a hole or trach in her neck, she has VERY thick hard to manage secretions, but her saturations are great day and night, and CPAP is a huge struggle to keep on her...Maya has learned that she only gets to watch Signing Time if she wears her CPAP. We had a great moment 2 nights ago where we got CPAP on her after she was sound asleep...she wore it for about 1 hour...sigh. That has been our greatest success thus far. We certainly hope for improvement.
Thanks for all your prayers, keep 'em coming!
Marty