We have learned to accept that planning is a moot point for our family because nothing ever seems to go according to our plan. Of course we have ideas in our head of what we hope will happen, but it remains an illusive dream. That way, if it happens...fantastic, and if it doesn't...we are ok with that, too. Christmas is almost here, and we have a hope of being with family to celebrate. However, so many different variables have to fall into place: Drake will have to be up to traveling and all family members will need to be healthy (on our end and extended family). We have had to supplement oxygen support for Drake over the past few days. He isn't showing any other signs of distress, but he is requiring oxygen. I think this fluctuating weather is playing a big part in his respiratory issues.
We have been a little shorthanded for the past week. Our one and only night nurse (we still have a night nurse position available) is out sick with bronchitis. After learning about this, we received a call that our Fri, Sat, Sun day nurse would be out sick as well. Lisa filled in on Saturday and Sunday. She has been working 16hr days to help us out during this time of limited staff...because she is awesome! She's even doing his last evening breathing treatment, and then I take his middle of the night and early morning times. Luckily, Brian, Lisa and I all seem to function quite well on minimal sleep, but it is still challenging!
Twice Angels of Care has found us a substitute nurse for the night shift; however, I have found that I get more sleep/rest when I'm on the couch taking care of him myself. Having someone new in our home who doesn't know Drake gives me anxiety. I just can't sleep because I am too worried that they will do something wrong. I know I have to trust our nurses, but trust takes time to build. I know when our regular night nurse is healthy and back with us, I will have a wonderful nights sleep!
We have been enjoying the Christmas season at our house...complete with reindeer cookies! We had fun baking and decorating together! Drake took part in the fun, too! Daddy helped him place his decorations on his very own cookie! He may not be able to enjoy his completed masterpiece, but we did let him try the frosting! Kennedy LOVES to help with everything; therefore, she was eager to join our kitchen project!
Family Christmas photo by our house! (Thank you, Eleni!)