Early yesterday morning, we brought Jacob to emerg because of a high fever and LOW oxygen saturation. He has a pneumonia - a different one than he typically gets, and thankfully he is doing so much better already! Amazingly well!!
After having a hard discussion with Lisa, our palliative nurse practitioner, it was decided that we needed to add a med to put Jacob to sleep every night. Another negative! He just won't sleep enough without some help. Without the proper sleep, he is constantly GRUMPY!! It's just too much to handle a boy that cries for hours on end with us not being able to do a thing! Hopefully with more sleep, he'll be happier when awake. Time will only tell.
We will monitor him tonight in the hospital, and if he handles that ok, we'll be heading home tomorrow. Once we are home and he's proving to do well with the med, we'll work on getting rid of two of his meds he's currently on, which don't seem to be doing the desired affect anymore.
So, hopefully tomorrow is a day that we can reunite as a family again.
We covet your prayers!!