a shunt

The decision is not official, but I believe Brian will have a shunt installed soon. When I say soon, of course, I mean I HAVE NO IDEA WHEN, because that would require an answer and commitment and I can't obtain that. When I say I have no idea when, I mean sometime on Friday or Saturday. In which case, Brian would be released sometime on Saturday or Sunday. So, I guess technically I have SOME idea of when.

I have plead our case to every single solitary person that crosses our path - this has helped Brian, we are thankful for this, now we just want the shunt put it so we can go home. Brian tells everyone, too. I explain that we are dealing with advanced Grade IV cancer and have finally come to peace with that after many years of dealing with it. We want to be at home surrounded by our friends and our family. We want to be together in OUR environment. No alarms and tubes and beeps and blips and things that go ping. No one seems to be in any sort of urgent mood except us, but I continue to do my best.


Brian is feeling so much better. He was up on his feet a bit today. He was still very unsteady and his right side was weak and slow, but his mood is night and day different. Yesterday being night and today being day. He is having conversations with people and eating fine and feeling so good. He says he is stronger and feels clearer in his thoughts, etc. In fact, we were watching (or attempting, anyway, with cell phone calls and vital sign checks constantly interrupting) RENDITION. We began watching this yesterday before we were told to come to the hospital. Part of the movie is subtitled. Today, Brian remarked, "I can read the words today." I inquired, "Could you NOT read the words yesterday?" He said, "Not really." In addition, his speech is improved, but still not what it was a few weeks ago. He is still struggling with some number functions. He had no idea what the year was, but he assures me he had no idea what the year was before, either. I said, he probably had at least an idea.

He is getting no sleep. He had a roommate that has been snoring and unresponsive since he arrived last night. The roommate has more alarms and machines that go ping than Brian does. Anyway, after telling every single person that would come into the room and ask what they could do for Brian that he wanted to be moved to another room, he was finally moved at 4:15 this afternoon.

The biggest restriction Brian has is movement right now. This drain is coming out of his head and into a reservoir bag on a pole next to him. It works by gravity. If the brain does not drain the spinal fluid through normal means, it is picked up by the drain and into the bag. There is a level and a laser attached to the bag contraption and they point it at Brian's ear. His ear needs to be level with the bag to keep the equilibrium and pressure correct. If he raised or lowered above or below the bag, the spinal fluid could drain faster than it should, or fill up in his head faster than it should. Either is not something that is pleasant or desirable. That is a nice way of saying, it could be bad. So, if Brian is going to raise or lower his head, he has to tell a nurse so s/he can clamp the drain until he is repositioned, reposition the bag and finally unclamp the drain. This would basically suck to have to endure for another day when we know it is working and we want to just move on.

Gavin is vomiting today. Awkward segway, I realize, but hey, facts are facts. He is sicker than a dog. I have no idea how or why that term ever came to be, but he feels awful. He turned down a chocolate chip cookie and a Hershey Bar today. For those of you that know Gavin, you KNOW he is sick when that happens.
Regardless, due to this sickness, I am not taking him to the hospital to see Daddy. I think I may take Grant for a couple minutes. They have a Spotted Cow (one of his favorite ice cream shops) in the hospital, so I have effective good behavior bargaining power. He is packing a Twinkie to take to Daddy. I am pretty sure he plans on eating it, though.

Anyway, when we know more about when the surgery may be, I will keep you posted.

KEEP BELIEVING