Mar 14, 2012 - 2:40 am
We have had a pretty big change in David's condition. He had multiple seizures last night....8 of them in about a 3-4 hour period. They were not clonic tonic ones but they were still very upsetting and they took a lot out of David. We went by ambulance to Salem's ER, and from there, they took David up to OSHU's NSICU (neurosciences intensive care unit). They were afraid that the seizures were going to escalate to a point that David would need to be entubated, so that's why we were in NSICU. The thought of the seizures progressing to a point where David would need to be entubated makes my blood run cold....
They did a CT in Salem and it showed disease progression, edema, and increased mass effect. Devastating news. When David talks, he is cognizant and aware, but he's not talking very much...only answering questions put to him point-blank. He's doing odd behaviors....tapping, flushing the toilet over and over and over again, taking 5 minutes to butter and rebutter and butter his toast again. I ask him why he's doing that, and he says he doesn't know. The drs don't know either. It could be from swelling, meds, tumor...or a combination of all three. I suspect the combination.....plus he is absolutely exhausted. We didn't sleep much at all last night with the seizures and the hospital trips etc.
My concern (one out of a a million worries) is that the mass effect is now great enough that they won't be able to treat David with the BBBD. They did an MRI when we got to OHSU and said that the MRI would tell them much more than the CT, and they would know more about the extent of the mass effect, the tumor growth, the swelling, and if David could have treatments or not. They told us that they would let us know the MRI results tonight. They never came and told us a thing. I think that is very ominous. And they did another ultrasound, checking for blood clots, and they never gave me the results. But they left David's chart in his room and I read it and I'm pretty sure that they found more clots.
David's eyes look clear but he looks really tired. They increased his Keppra from 3,750 to 4,000 and his Gabapentin from 600 to 1,200. They also really ramped up the dexamethasone. I don't remember the exact dosage but he was only taking 2 mg a day and now he's taking more than that....every six hours. I hope it helps with the swelling. I think the swelling is responsible for the odd behaviors. It's like the stuff he was doing when he had all that swelling after the BBBD treatment. He's not nearly that sick, though. And the NO team member that saw David was very impressed at how much better he looks and acts since the last time he saw him when David was discharged after the abscess/infection/hospital stay last month.
Well, that's where we are at. I am trying not to panic but of course I am deeply concerned and very,very worried. I am going to have a long hard night, wondering about that MRI.
Please pray for David. I am praying for everyone on this site too.
Love and blessings,