Skip to main content

Warning: Some unpleasant details. My attempt at the medical jargon

Saturday today.  The hospital was a ghost town.  We were there for three hours in the morning in Leo's niche in the NICU.  There was a new doc who did rounds this morning.  I got to ask some questions about the difference between hydrocephaly and hydranencephalus.  In Leo's case they don't know which one came first but both seem to be present.  Basically, hydranencephalus is the the more destructive pattern for the brain but it doesn't always mean swelling.  Kids can be born with hydranencephaly without the larger heads and pressure in the brain cavity.  We don't know the stats but it seems that babies who have extremely abnormal brain development can function on their brain stem for a while, for months even years, because that part of the brain controls most of our involuntary reflexes such as swallowing, digestion, heartbeat, etc.  The future of these kids is very tenuous however without the presence of the "higher" brain tissue needed for development and other complications often arise.   Hydrocephaly on the other hand is often a symptom of hydranencephaly (but it can be the other way around) in that it is mainly a plumbing problem and not solely a destructive process.  There is a buildup of cerebral spinal fluid because of blockage or hemorrhage in the ventricular of the brain that pushes the brain tissue up and all around and sometimes high against the scull plates.  In a baby these soft malleable plates will form the scull but the presence of water is not a big deal so far as it can be drained.  They can drain the fluid with a shunt and the brain tissue can settle into place over time as the skull fuses.  But without the brain tissue present due to the destructive forces associated with hydranencephaly a shunt is considered a comfort measure, as it will be in Leo's case.  Medical jargon notwithstanding, we love this little guy.  We just want to see him more comfortable at the moment and that is why on Monday they are going to put in a shunt.  Prayer service tomorrow for him.  We have a little room reserved for the service.  He will receive communion for the first time (we baptized him when he was born) and it gives us some time to be with him before the operation, which we hope will be a success.  This is the first active measure we have been blessed to take with Leo and it is our desire that this will be a great relief for him.  
Peace.
Justin
 


           

Comments

  1. Thanks guys for these little messages. Our prayers are with you. Blessings on you and Leo.

    ReplyDelete
  2. All four of you are in our thoughts and prayers. I hope everything goes well Monday.

    ReplyDelete
  3. Thank you for the updates and for all your beautiful words, Justin and Anna. You are truly teaching us all the meaning of Christ-like love and patience. May Leo continue to bless all our lives and may God bless and protect him, particularly as he faces surgery tomorrow. We will be praying for him and for all of you. Love from the Carrs.

    ReplyDelete
  4. We continue to keep you in our hearts and prayers, especially little Leo, tomorrow.
    Thank you for this medical info. Helps a great deal to understand Leo's condition.
    Love to all!

    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…