Ever Seen The Movie...

Spinal Tap? I haven't but we're down in the cafeteria while Simon is getting a spinal tap to make sure his infection hasn't spread to his brain. The Infectious Disease doctor was worried because he has been out cold for most of the day and extreme sleepiness is a symptom of meningitis, or an infection in the lining of the brain. So...yesterday we thought we were going to go home Thursday or Friday and today Simon is getting treated for a family of bacteria (gram negative) that by their design release toxins from their outer shell and tend to make people go into shock. The crazy part is that I'm barely phased by it.

I was having horrible flashbacks this morning when I had to hold him down while a nurse put a catheter in to get a urine sample (couldn't get one) and stuck another one up his nose to get a mucus sample. I felt those familiar cold fingers grip my gut while the Infectious Disease doctor was telling us that gram negative is really serious and that she wanted to rule out meningitis. It was sickening to walk in this morning to our baby with blue lips, looking pale and ghostly again. We both were having flashbacks to August 1st.

AND we know how this goes. Two steps forward, one step back and we just have to pace ourselves. Everyone here has said how fortunate it is that he got this infection while he was still in the hospital. It's pretty common to get an infection in a central line and kids often don't come back to the hospital until they're pretty sick with it.

I think in the big picture, I'm actually feeling like we'll all be fine and this is just a setback, but right now it sucks.

We're laughing right now, because they had warned us that it might take up to an hour to do the tap and we haven't been gone 5 minutes and they just called to say they're done. YEA!

Just came back up and he is *stoned* on Morphine. It's a little funny and a little disturbing. He's probably just going to sleep for the rest of the night...

Laura Writes:
It's been quite a day but once again I have had my "intuition" backed up after having been placated for most of yesterday that Simon was not really that fussy. I just want to scream "told you so" but I get it. There really wasn't anything to do until he presented with something. When he finally presents, he presents big. It seemed like when we were first told about the bacterial infection and that it was gram negative that it was actually a good thing. Not as serious as a staph infection like last time. It wasn't until the Infectious disease folk came up (and not even the first ID doctor but the 2nd) that meningitis was even mentioned. I felt like a huge bucket of ice water was dropped on me. Really?? Meningitis? Really?? We were just on the brink of getting home. Almost 8 weeks of steady uphill days. Test scores getting better, a successful wean from Milrinone, days/weeks gone by without a symptom....and then this.
I'm crushed. I feel almost, not quite, but almost defeated. I know I'm not and it's just the end of a really rough day but frikkin' A.
Obama better win. Prop 8 needs to be defeated, and Shimmy needs to not have Meningitis. Please.

7:55 pm Test results back- NO MENINGITIS!!!