Another long, painful and exhausting day at the PICU finally draws to a close...or does it? It is hard to say because the days and nights in the intensive care unit are often meaningless. They blur one into another with the only distinction being triggered by a different set of neon lights and nursing staff; the night set almost indistinguishable from the day.. I'm whining I know, but the daily cycle of adrenaline induced energy and the resulting overwhelmed crash is taking its toll. And the process of healing Leo is just beginning...
Today he took his first step on that path, after two weeks of severe illness.
In other ways, though still very weak and ill, Leo is a bit more alert and aware. He's been asking to watch his favorite shows on the iPad and this morning even requested a "hug" from me. It's hard not to bawl when he feels awful, but impossible not to cry when he shows little glimpses of his sweet self coming through the illness.
He seemed to recover pretty quick from the surgery today, albeit was a fairly simple and fast procedure. But now he's got two open wounds in his chest and he was complaining pretty clearly about the wrongness and pain from that; so he's on scheduled pain meds which seem to be doing the trick as of now.
We are almost don't know what to hope for at this point, other then a quick resolution, but it still seems like we will be here for perhaps another five days at minimum.. He is still a un-solved puzzle and there may not be an easy answer. At least we know that is is something to do with his shunt, but the plot thickens for sure!
Again, thank you everyone for your outpouring of love and prayers!
Today he took his first step on that path, after two weeks of severe illness.
 |
| Crossing the "red line" into the operating room. |
This afternoon he had a surgery to externalize the shunt tubing from his tummy. By tonight the bag was filling up, so his shunt is still draining. Unfortunately, so was his chest tube. The docs will give him another 24 hrs or so to see if that fluid stops. This would be the best, because if it doesn't stop, it means that his shunt is leaking higher up and would require them to go back in and try, again, to determine where the heck it's leaking from. The waiting is driving me bonkers, but this is the way they want to handle this very, very, rare situation. Rare pretty much is synonymous with Leo. God help us!
 |
| Even his lovies had to get scrubbed up! |
In other ways, though still very weak and ill, Leo is a bit more alert and aware. He's been asking to watch his favorite shows on the iPad and this morning even requested a "hug" from me. It's hard not to bawl when he feels awful, but impossible not to cry when he shows little glimpses of his sweet self coming through the illness.
He seemed to recover pretty quick from the surgery today, albeit was a fairly simple and fast procedure. But now he's got two open wounds in his chest and he was complaining pretty clearly about the wrongness and pain from that; so he's on scheduled pain meds which seem to be doing the trick as of now.
We are almost don't know what to hope for at this point, other then a quick resolution, but it still seems like we will be here for perhaps another five days at minimum.. He is still a un-solved puzzle and there may not be an easy answer. At least we know that is is something to do with his shunt, but the plot thickens for sure!
Again, thank you everyone for your outpouring of love and prayers!
Hoping the pleurevac stops filling up! Praying!
ReplyDeletepraying here too! how hard for him and for you! I read this to my husband so he knows who we are praying for <3
ReplyDeleteContinued prayers for your little Leo, and for all of you!
ReplyDelete