Skip to main content

Post-Op day 3

And the letter of the day is P, as in not enough. Little Lion man is still a little high and dry, and very swollen today. The only way the edema in his little chunk a munk body will go away is through his kidneys, and it looks like they are still napping. When I left the PICU tonight the nurse and attending were planning on playing a little with the balance of the meds, fluids, and in addition perhaps give Leo some more blood. He sprung a little leak today from the site of his externalized shunt so he is getting a little depleted again. No worries about the leak, since the neurosurgeon and her team put a little stitch in to patch the leak and all is well again. It was neat to see them do their thing, even though this procedure was miniscule in comparison to his surgery. I even got to help a little. That made me feel better, because lately all the help I could give is of the moving-out-of-the-way and just-talk-to-him kind. That's all fine and good and definitely has it's own place, but it is nice when the mama bear instinct gets appeased, even a little....
So the projected plan for the week is to take him off the ventilator perhaps Friday or Saturday, moving him up and out of intensive care, and putting the shunt back in on Tuesday. Then, perhaps home on Wednesday or Thursday.... We can't wait to put this intense ordeal behind us and get some real rest.

Here are a couple pics of the swollen Buddha, and of the team patching his leak.

Thank to everyone for all your wonderful comments, love, and prayers to us. We love to sit in our little nook in Leo's room and real all your uplifting words.


  1. “When you have come to the edge of all light that you know and are about to drop off into the darkness of the unknown; faith is knowing one of two things will happen: There will be something solid to stand on - or you will be taught to fly” ~Patrick Overton

    Thanks so much for the update. The praying continues!

  2. ... but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
    Isaiah 40:31

  3. We were praying for Leo this morning. Lots of love coming from Norfolk.

  4. He looks beautiful. Hoping and praying that he is improving with each hour. So glad to hear that it all went well. Praying for God to be your strength, energy, comfort, and peace in these days ahead. :)

  5. Keeping Leo in our thoughts and prayers.


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…