Wednesday, September 13, 2006

Little Man Update

Uh yeah. Long day. Ct scan, lumbar puncture, many labs run. So far every HORRIBLE thing they are looking for is not present. Praise God for those blessings. I guess for me it seems so clear cut. Um thorazine overdose. For the docs though, not so clear cut. This is child who can not walk anymore, can not talk anymore, can not swallow, something is WRONG. Never even occurred to me it could be awful, horrible things, stroke, menegititis, etc. We are in for the duration. MRI planned for tomorrow to check for a Chairi Malformation. Not a good thing either, and a possiblity with his genetic syndrome. Because of his VNS, he has a magnet in his chest, so they have to use a special scanner, etc.
Tonight, it is past 10, and the tech said I could take a mental health break, so I come upstairs to check in with you guys.
Little Man is still not able to walk, swallow, talk and gets agitated easily. Because he is chronically in the hospital, Bald Man and I have the routine worked out, we tag team it. So tomorrow, early if I don't get enough sleep tonight, or later if I do, Bald Man will come up and tomorrow night, if we are still here, I will sleep in my own bed.
Sucks people, it really does. Prayers please. Thanks for thinking of us. And for lurkers delurking! That was a delightful surprise, I really thought no one except my three constants was still reading.

3 Kids Who Want To Play:

Liza said...

VNS? Chiari malformation? PAGING DR. GOOGLE! I was just over here feeling sorry for myself because I am staying up late to bake dairy-less, soy-less (not a hardship until you realize that the substitute for butter is shortening, which is made of hydrogenated SOYBEAN oil), eggless (aaaaaghhhh yes no eggs either because they're an allergy food and he's an allergy kid) cupcakes for my littlest one's birthday tomorrow, so that he can be like a normal kid and have something to smear on himself and his little friends.
Then I came and read this. And it all came flooding back; ten months ago it was me, in a hospital room, with a laptop and a kid who seemed to be dying but not for any reason anyone could figure out (until someone finally did). I think I aged twenty years in the month of the the three hospital stays. The incompetance, the shift-change confusion, the egos, the disregard for my boy's comfort and needs in the face of schedules and vital sign checks and tests and tests and tests.
I've been in your shoes, and I know how much it sucks, and I'm so sorry. I'll be thinking about you tomorrow while I'm scraping runny substitution-recipe icing off of the baby, and hoping that you can look back on this in ten months and think "well, that sure sucked, glad we sorted that out" and celebrate your son's life, too.

sjusju said...

Oh Jo, my thoughts are with you, Little Man, Bald Man and your family! I am crossing all my fingers and toes and hoping he gets better.

take care,
love sjusju

Klynn said...

I keep coming back hoping that you have some good news. It's so rough when the docs are clueless. And hospitals, scheduling, coordination, yeah, right. Never works. Still sending thoughts and prayers your way. Hope they get it worked out soon, and that your little man is back to himself, or even better, ASAP.