Skip to main content

Surgery One In The Can.

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.

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!




Comments

  1. Hoping the pleurevac stops filling up! Praying!

    ReplyDelete
  2. praying here too! how hard for him and for you! I read this to my husband so he knows who we are praying for <3

    ReplyDelete
  3. Continued prayers for your little Leo, and for all of you!

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…