pressure (edited with update)

As I write this, Brian is having a hole drilled into the top of his skull and a drain installed to relieve the fluid built up in his brain.

I may not have time to write all the details because this procedure is only supposed to take about 45 minutes, but I will get in what I can.

As you know from my previous post, the surgeon called today. We were awaiting a phone call to determine the schedule. At 1:15, we got a phone call from a nurse saying they have been holding a bed for Brian and was he on his way. I explained that we were waiting for a call from the doctors office, but we could be there right away. We were there within 40 minutes - around 2:00. At 3:00 Brian, was finally taken to a room. Hurry up and wait.

After he was made comfortable in his room, Dr. K's nurse practitioner assessed Brian, read his scan further and came back explaining the options for draining. She was to speak with Dr. K. and then have a recommendation. Dr. K and the nurse practitioner told us around 4:45 their findings. As it turns out, I misunderstood from our conversation the type of swelling Brian had. He has swelling in the ventricles. The ventricles are the two large fluid filled cavities in the middle of the brain. His are enlarged. Typically, those with enlarged ventricles have a drainage problem for whatever reason and can have complications. However, the complications are not typically acute focal symptoms as Brian is experiencing - the right side weakness, the speech issues, etc. Still, they recommended a procedure which would drill a hole in Brian's skull insert a tube and drain the spinal fluid off the ventricles to normal pressures. They will then monitor his neurological progress - speech, right side, stability, balance, etc. - to see if this improves. Typically, they monitor for about 24 hours.

IF this relieves Brian's symptoms and causes an improvement, Brian will likely have a more permanent drain installed. One that drains from his ventricles to his stomach. Weird stuff. Sci Fi Channel.

Oh yeah, I forgot to to tell you, the procedure Brian is currently undergoing, is happening right in his room at his bedside.

What I also haven't told you yet is that this day has been one miscommunication after another and WE have suffered from it. I am so frustrated.

First of all, the surgeon's office neglected to call us and get us to the hospital when we they wanted us and were ready for us. Therefore, we were delayed - hurry up and wait. Then, when we arrived, and they decided to do the procedure, they wanted to move him from the overflow neuro ICU to the regular neuro ICU. Hurry up and wait. This all happened right around dinner time 5:30, so Brian was getting hungry. He was told not to eat due to upcoming procedure. Then it became apparent that shift change was going to occur and it was not going to happen before shift change. Hurry up and wait. SO Brian was given a sandwich and baked Lays and water 6:00. THEN, the resident surgeon performing the installation of the drain calls around 7:00 and says it will now be 10:00 at night before he can do the procedure due to food in Brian's stomach. Hurry up and wait.

I was LIVID!

The entire reason we agreed to this is that we were told it was quick and easy and could provide immediate relief. Then we get here and are told it MIGHT provide relief. Then it gets delayed by hours due to food. And BAD food at that. Brian still isn't sure if it was egg salad or chicken salad. And once again we don't know WHEN we are leaving the hospital.

So ANYWAY, this could have all been avoided if ONE person would have made a call the way they were supposed to in the first place. This drain would have probably been installed this afternoon. NOT at 10:00 at night.

ALSO? They have to watch him for 18-24 hours to determine the benefit. THEN, surgery would have to be scheduled for installing the permanent drain and probably wouldn't happen until SATURDAY with release on Sunday or MONDAY. We specifically made it very clear that we are aware of Brian's advanced cancer and do not want to spend these precious moments in the hospital. We want to spend it as a family - together - in our home with love and laughter and friends and family and our children and good movies and an occasional beer.

SO I am mad and frustrated because other people's mistakes have cost us precious time. Time that cannot be replaced. Time that in invaluable at this point in our lives.

You can bet I will make this known to DR. K in the morning. I also let everyone that touches our path know that if this isn't helping Brian, I want to go home TOMORROW with hospice help and big fat apology. I don't care if it is TEN AT NIGHT.

And of course, I won't let my venting and frustrations get in the way of doing what is best for Brian. Don't worry. I am just mad.

Update: Brian immediately felt relief from the drain. He was more alert last night than I have seen him in several days. You could see in his eyes and his facial expressions a difference. They will continue to monitor him today to see how he fares. Don't know when to expect a decision for surgery for a permanent tube or not. Sometime today. I came home last night to get some sleep and to show my presence to the boys. This is a time of turmoil in our home as it is. Gavin came home from school yesterday and his Daddy was gone. We don't know when he is coming home. So, I am doing everything I know to balance my time and presence with Brian and the boys. Thank God my Mom had guidance from the Lord to stay with me this week. I had told her it was unnecessary just on Friday.

Also, If anyone is considering it, please do not send anything up to the hospital. Brian is at OSF - St. Francis in Peoria, but being in ICU, he is not allowed to have much of anything in his room.


KEEP BELIEVING