Sorry I didn't update yesterday. Caelen has been awake the last 3 nights and I'm exhausted. My eyes are closing as I'm typing. I may leave tonight and go back to Ronald McDonald so I can sleep.
Anyway, Caelen is doing well besides the not sleeping. He is happier and transitioning back to feeds again. Speaking of, he developed chylis again which is a leakage in his lymphatic system. (Google chylothorax). It doesn't really show up until feeds get restarted. This happened after the Glenn too and we had to sit and wait out the drainage in the ICU. Same story here. He's been switched over to a special formula that greatly reduces the fat in his minimal diet. The hope is that it will lessen the chylis and chest tube leakage.
And Speaking of leakage, the chest tubes were putting out 2 liters a day a week ago, we finally hit 1 liter a few days ago, and yesterday it was only a half a liter. It's still a lot, but good progress is being made. We just hope that the chylis doesn't increase with the new formula.
Caelen is getting out of bed more and and sitting in the red wagon that is now on loan in our room. He watches movies in it and its great for his neck and trunk support. He's also talking a lot more and laughing a lot. So it's the little things like his personality coming back that make the sleep deprivation more tolerable. Thank goodness for my mom who has been on Caelen duty the last 2 days while I basically drag. She's been a huge help with entertaining and caring for Caelen.
That's it for now. We are holding the course and my little monster is back. I can't wait until he starts running the halls and terrorizing the nurses. Thank you again for the prayers, please keep praying for a full recovery and healing.
Lastly, a big thanks to Caelen's wonderful teachers, Mrs Ellen, Mrs Tammy and Mrs Mindy for the giant care packages that arrived today. Can't wait to dig in and play.