tough day

Well, last night, we went out to celebrate yesterday's good day for Julian with a dinner out and this morning we woke up to hear that his electrolyte imbalance is quite bad and that CPAP is back on the table for Monday morning. They cut his lasix dose in half and increased his Diamax and added in a third med to thelp with his imbalance. But, if it doesn't work and his body is still so out ot wack tomorrow morning, then CPAP is our only choice.
CPAP means a step backward that is pretty tough as parents to hear. He hasn't been on it since he was born. It is a helmet type device strapped over his nose that forces air through. Most babies don't like it and require some form of sedation to keep them comfortable.
It isn't as scary as re-intubating him like they considered doing last monday, but it is a pretty big change in his life and one that comes with consequences that are painful for us to consider, especially as they relate to his being much restricted with his ability to interact with the world and with us and of course, CPAP keeps him from developing his oral skills and other important developmental steps.
We are so exhausted from the going forward and back with Jules. We are so hopeful one day and so discouraged the next, that it hard to have any clear vision for how things are going.
We go to sleep tonight very stressed and exhausted, trying to stay positive and putting on a brave front for Gigi.
Joy