Skip to main content

post-Op day 4

Too tired tonight, but a quick update for all you Leo enthusiasts! All is well today, he had his wound drain removed today and started peeing buckets (literally) after they gave him a combo med which helps pull the fluid from the soft tissues into his kidneys, and then gives those kidneys a kick start. It was amazing to see how the swelling started going down the minute he started passing all that fluid. He also had his first bowel movement since the surgery tonight before I left the PICU. Yay! (Sorry if this is too much information, but right now, all this stuff is pretty important.) I am so proud of my little guy! He is totally amazing. Tomorrow morning they will try to trail xtubate him, and I really hope he is ready for that. Its hard to see him all plugged in and sedated all the time. When his meds start wearing off is when I get to see glimpses of my goofy son. Like when I was changing his diaper and didn't notice that his hand restraints were loose and, of course, when I looked away for a second he managed to pull out his own cath. Thats my guy! Anyway we are doing ok, but getting pretty tired. Nika can't wait to get her brother bear home. Love to you all!


  1. Thank you so much for sharing each day. We are praying for Leo and to hear of his progress each day, continually reminds me of how great and awesome our Lord is. He continues to be with us through the problems and circumstances he lets come into our lives...all of which continue to mold us into his image. I am praying for a complete healing for Leo...Thanks,

  2. Glad to hear the P & P are working, and yes this is very important after hours of surgery :-) We are praying for progress each day as he continues to heal. It has been very interesting to see nurses reactions to Leo's story and the amazing role of faith and prayer touching these folks as well... Thanks for sharing, knowing how exhausted you are :-)

  3. He's making such wonderful progress! And yes, the "outs" are just as important as the "ins"! 13 years of nursing will tell you that!

    Prayers for his continued healing.

  4. We are so grateful for the posts. We will think of sweet baby Leo wrapped in the folds of the Theotokos' robes as he transitions from the PICU with so many prayers surrounding him.

  5. Thanks for the updates, Anna. I await them anxiously. We are worried for you and Justin and are continually praying for Leo's recovery. It's so hard to see our children suffer. Thinking of you! Hope to see you out of doors soon.

  6. Haha, don't worry about TMI (too much info)! Any of us who have had surgery can relate to what great news that is. I can't wait to see the less puffy version of Leo (compared to Wednesday)!

  7. Wonderful news! Thank God for His presence, His saints' prayers, and this crack team of doctors y'all have!

  8. So wonderful to hear he is doing well :-)

  9. Glory to God for all things! - for P & P too, "in wisdom He has made them all" ;-)

    Only please try to have some rest during the day...


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…