Skip to main content

Blood is....

Everything? Even if you aren't a vampire, blood should be on your mind. It is certainly on ours. It was the main topic of conversation during Leo's pre-op appointment yesterday. That and how blown away his neuro was by his development, head control, and otherwise irresistible chunky cuteness. She hadn't seen him in a while so we had to show off a bit. In a weak moment I inquired, "We do have to do this surgery...don't we??" (Insert wavering voice and shaky tone and you will be right on) And to my surprise, or perhaps not, since she has been the only doc that has ever had anything positive to say about Leo, she admitted without a doubt her belief that this surgery will not only fix those funky fluid things, but by relieving him of the handicap of his head weight he will just take off and start hitting those important physical milestones. Wow. His visiting nurses, who we have basically adopted into our family keep mentioning things like baby gates and making our cabin crawly baby proof etc. I'm almost afraid to hope. But lets face it, there is a grand spanking chance that this surgery will not only set Leo free physically, but set us free mentally. Sure, chances are Leo will be a pretty special little dude, but no one is perfect. And sometimes he seems pretty perfect to me. Ok enough trying to make myself feel better after signing those papers yesterday which basically are formatted to freak the living daylights out of parents so in the event of anything they won't think of taking things out on the docs because they will be incapable of thought from sheer terror.
So, this now brings me back to blood. The main risk for the surgery itself is blood loss. Because it is a lengthy surgery, about 8 hours or more, the main concern for Leo is too much blood loss. Because there is no way to staunch the flow of blood from bone, especially since they will be working on it and reshaping it, Leo will have to have transfusions during the surgery to insure that he never gets to that point where it becomes critical. They will probably start the blood running right as they get him into the OR, because it is harder for babies to catch up once their blood levels drop below a certain point. Since the estimated surgery time is a critical factor, the surgeons have decided not to reconstruct Leo's eyebrow ridge and eye sockets this time, but focus on his skull. They will smooth out the ridge in his forehead though, and bring it out evenly. Unfortunately, I was not able to give my own blood for the transfusions, since Leo is not only a completely different blood type from me, he's different then most of the people in our families. He is B positive and the rest of us are either AB, A, or O. The surgeon vouched for the quality of the blood in the banks there at Dartmouth so we had to make our peace with that and put our trust in the system. And in God of course.
So they will take him from us early on Monday and give us a buzzer instead. Periodically they will buzz it and send someone out to come tell us the progress. Which means that I can't run off for the day to the horse barn. Instead we will be pacing the halls,  hopefully avoiding the crappy junk food and fighting off anxiety attacks. And thank God for Netflix. After the surgery they will take him straight up to the PICU where we can finally get to him. They don't know how long he will have to intubated, hopefully no more then a day or two. And after that it is just holding vigil over the shunt and making sure that fluid stabilizes with no infection so that on Friday they will be able to slip the shunt back under his skin. And after that, we can go home! Gosh we haven't even left yet and I can't wait.

Now the main goal until surgery day is to keep all nasty little germs away from Leo, because we want his immune system fully operational for this, so please folks don't take it personally if I won't let you kiss or hold Leo from now until we are home safe again. And this goes for children too, so parents, as your child's shepherd, please help them avoid the temptation of sticky finger caresses and snotty nose rubs on Leo. Any other day, go for it, but not this week. And please, if you are at all sick, stay at home....

As always, love to you all, thanks for your awesome support and especially for all your miraculous prayers!

Comments

  1. Fervent prayers! May it be blessed!

    ReplyDelete
  2. Saw your blog on a friend's post on FB, and although I feel a bit like I'm intruding or eavesdropping, I am so inspired by your family and Leo's story, and have read almost all of your blog! (Is that weird to you??) Hopefully not, and I just wanted to say that your Leo is so so sweet, and he and your family are on my mind (I am a mama of three, so I'm trying to make my mind imagine what your heart is going through with his upcoming surgery.) I wanted to let you know that I, although a total and complete stranger, will be praying for you and Leo and his surgery. Your faith and trust in God is beautiful, and He is blessing that and honoring that, and He is holding Leo in the palm of His hand!! Just wanted you to know that you have more prayers coming your way. :)

    ReplyDelete
  3. Haha! Thanks for your comment! No, I don't think its weird, after all, this blog is public and there are lots of folks (so I hear from the grapevine) like you, just following Leo, so no worries. Plus if anything, this blog is as much for other people as it is for us. It is just some of Leo's magic, that so many people, known and unknown have been touched by his life. We love it. And we love to read comments and get to know folks. I thought we were a bit isolated before Leo, and now he has made more people known to us in just under a year then we could have hoped to know in a life-time. Don't ever feel like an intruder, since if you are reading Leo's story, then you have already been touched by his magic, and that makes you a little lion groupie! Hehee. And thank you for your kind words. (and prayers!)

    ReplyDelete
  4. We will be thinking of you and praying for all of you!

    ReplyDelete
  5. Leo is on the Dormition prayer list.

    Fr. J

    ReplyDelete
  6. He is so beautiful! Our prayers are with you especially in the coming days.

    Lots of love,
    the Sokolovs

    ReplyDelete
  7. Yes, I HAVE been touched by his magic, thank you for sharing that with so many people. His eyes and his smile are magical. :) I'm so very much looking forward to hearing about his surgery next week.
    Your new cyber friend,
    Tina (mama to Faith, Jeremiah and Anaiah)

    ReplyDelete
  8. Lots and lots of love to you and your little lion-man. You are in my prayers.

    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…