UPDATE #1: The results of the spinal MRI are in. There is something obstructing the flow of spinal fluid. They showed me the MRI. There is a narrowing of the spinal fluid in the neck area, and then a bulge of fluid just beneath that, indicating a backup. Literally a bottleneck. In his neck. The fluid should be uniform all the way through, but it’s narrowing, and then as you look lower down, further down the spine, it bulges. The neurosurgeon has not seen this yet because he is in surgery. When he’s through with surgery, he’ll give his analysis. And then we’ll determine what to do. The fluid in the MRI does not indicate an infection (which still doesn’t address the white blood cell count being so high).
Is this something that was there at birth? Is it only being seen now because of some kind of infection? Is this related to some form of meningitis? Is this related to the shunt? Is this something that might have caused his hydrocephalus or is it a possible result somehow of it? This is my list so far. I’ll post more updates as we move through the night, mostly for my own sanity. So there’s a record of all this, so I needn’t keep retelling the story or status. "We’re only giving him clear fluids now because he might need to be in surgery soon, depending on what the neurosurgeon says." OH MY GOD. I hate this. Phil’s parents are with Abigail now, and he’s on his way here, to the hospital. Thank you to all of you for your prayers and thoughts and love.
UPDATE #2: The neurosurgeon said he believes this obstruction is what caused the hydrocephalus in the first place. He believes it has been there for a long time. The obstruction is in the front of the spine, not the back. It’s up high, in the neck, cervical area. It’s very rare, he said, not impossible, but rare for this kind of obstruction or narrowing in this exact place (in front) to be congenital. So, he thinks SOMETHING ELSE might have caused this obstruction. Meaning… this "obstruction" might be a cyst that was caused by something else! So now they need to scan his whole body for tumors, for cancer, for anything I guess that might cause a cyst or anything else that might be this obstruction. It could also have been caused by an infectious disease.
He does believe this, whatever caused the obstruction, has been chronic. Since Lucas seems fine and all his limbs react fine, etc., there’s no immediate need to operate. They might have to do another lumbar puncture to test for something else… for cancer cells or something like that. They were so focused on infectious end of things that he didn’t think they sent his fluid for cytogenetic testing. AND THIS IS FREAKING ME OUT.
His meninges are inflamed from his tail bone up to his neck, but his vertebrae are all fine. So could be some kind of chronic infection or something else. Basically, I still don’t know what the fuck is going on. I have no exhale answers. Nothing I can say, ah, okay. So here’s how we fix it. Now I’ve got all sorts of frightening thoughts in my head. I said to the doctor, "But I’m so confused. I don’t even know what to google anymore." He laughed, mainly because he doesn’t know either.
What it isn’t: chiari malformation, cryptococcal anything, or pms. That’s about all I know. There are a lot of "most likely not"s and "highly improbable"s" being thrown around. All the doctors are scratching their heads because it’s very rare that the fluid drawn from his spine would be different from the fluid drawn from his head. But the shunt is not infected and is working fine. So now the question is, and has been, what is causing his white blood cell count and protein to be so high in his spinal fluid (the fluid taken from the spine, not the head). It’s most likely not viral meningitis because that rarely has high protein. They doubt it’s bacterial meningitis because he’s acting fine, and nothing has grown on his culture yet. So what the hell is it?
Yesterday we had a family outing. Woo hoo! We all went to get tested for TB! Fun. Lucas stayed in the hospital as the nanny, Phil, Abigail, and I went across the street for our pricks. Results won’t happen for another day. But so far so good.
Lucas is now having a spinal MRI to rule out anything anatomical that might be causing the yellow spinal fluid. Maybe there’s an obstruction of some kind. And of course when I hear "obstruction" I think "tumor." Cause I scare the crap out of myself. No one has answers. We might have some later, after his spinal MRI. I have ‘rhea again. Abigail has a rash on her tush that won’t go away. It’s about the size of a dime. And she’s now projectile vomiting every once in a while. Oh joy to the world.
Updates to this post appear above
