I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.
Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plural space of the lungs. The theory is, since Leo man makes up on the highest to max amount of CSF possible the extra bit leaking out and around his shunt was the stuff that over a period of time, say a month, was collecting in his lungs. Remember those migraine episodes, and throwing up and passing out events? Well my theory is (and since I've been right all along here, its basically fact) that those events were the beginning of his malfunction and those were pressure caused symptoms. Anyway more on this later when I am more coherent with sleep, but to make a long story short, we think we know what happened, why and when. It just took ten days and a nervous breakdown or two, and some doctor slapping around to get there...
Since the new shunt Leo has been eating non-stop. And all he wants is pizza. Boy is made out of gauze, stitches, CSF, and pizza at this point. No room for puppy dog tails and that stuff.
He also is almost back to baseline with his communication and interaction, but is still weak and sore like an almost drowned kitten. Although tonight he sat up by himself for a good twenty minutes or so, while flirting with family and friends.
So there is a lot of damage control that needs to be evaluated in our family life, his therapies and development, our mental sanity etc, but I'm hopeful that once we get home, things will really start to improve. I would write more but I'm nodding off as I type so here are a few pics to tidy you over until I am able to write that we are finally home. Home. Home. Home. Can't hardly wait. This captive family is ready to get out and run back to freedom.
|Ten days of acquired PICU overnights clutter packed up..|
Happy New Year to everyone! Love from Leo, and us too. Here are his first giggles that have been absent for weeks!
|Grandparents entertaining the tethered Lion.|