surgery

Surgery is occurring today at 4:00 pm.

That is all.

Have to run.

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surgery...... Saturday?

So, the hospital FINALLY has an answer that surgery will be, AT BEST, Friday night and most likely Saturday morning. So, I, naturally, find this unacceptable and let the nurse know this:

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant of the surgeon, talked with the Nurse Practitioner for the Surgeon, talked with the staff nurse caring for Brian on every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

Then I was told to talk to the head nurse. So I explained this:

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

Then I was told I could speak with a resident if I wanted. I said yes. They need to understand the decisions they make and the things they do impact human beings. Human beings with emotions and families and lives who are not working currently because of illness, so while this may be their job - this is our life. And then I told him this:

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

And I was told all I had to do was ask a resident and I would have had an answer. And I was even angrier because if that is the case, why isn't the resident the one coming in and telling us the news? Why are they not more accessible? Why do they make the nurses do it? And why did I talk to so many freaking people today to get an answer to something that should have been a no brainer (no tasteless pun intended)

AND? AND! The schedule is full for surgeries that we planned for weeks in advance. So, this really should have been known and communicated.

We have been through the bureaucracy of teaching hospitals so many times. What I was trying to get across is that the too thick layers of communication should be transparent to the patient instead of fresting on the patient. It is not right. And I am tired of living through it. I am tired of dealing with medical language and terminology and procedures and delays and knowing more than a common person should know and knowing more than the stinking interns that come and poke around on my husband know and repeating myself more times than I do to my own children and getting no sleep and dealing with crap I shouldn't have to. You know?

And so my frustration now lies with precious moments we lost as family and friends and an entire DAY of time lost now while Brian sits there awaiting scheduling. Time that cannot be replaced. Time that has Brian surrounded by a medical staff and pokes and prods, and pupil checks, etc.

One thing I did manage to accomplish, though, is convincing the doctor to back off on checking Brian's vitals, etc. tonight. He is not the typical patient. We are beyond the point of unnecessary diagnostics and monitoring. Let the man rest. He agreed to this after I told him that "sorry just wasn't enough sometimes. The lack of communication was avoidable and that makes it more difficult to excuse."

By the way, I kept my composure very well and was able to calmly and cooly explain in a very rational voice and tone to each person our situation. I truly believe they all feel bad about what is going on. But, it doesn't mean I don't want to tell them to stuff their sorries in a sack. (the resident anyway. I actually feel sorry for the nurses.)




And yes, I will be calmer tomorrow. I have to stop writing these moments after these conversations. But it does give you a bigger glimpse into our lives. And why we wanted to avoid the hospital as much as possible at this point.

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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.

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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.


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Just when I feel we are approaching the end....

Dr. K, the surgeon, called today. According to the MRI yesterday, Brian's tumor is unchanged. HOWEVER, there is a tremendous amount of fluid built up in the cavity from his prior resection. This fluid, he said, probably isn't draining due to tumor sediment blocking normal ventricle drainage. The fluid, he believes, is causing Brian to be symptomatic, and not NECESSARILY tumor progression right now.

He wants to put Brian in the hospital today or tomorrow (waiting for a scheduling phone call) to temporarily drain the fluid and monitor Brian's progress. Depending on that outcome, he would then do a surgery to help the drainage process (not really sure what it would entail) that he said would last about an hour. Most patients leave the hospital within a day or two.

He really thinks this is the best thing for Brian right now. Relatively easy with little risk, potential immediate relief and easy recovery.

So, we wait for the word on scheduling this...

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Today history is made with the election of a new president-elect. Not the man I chose, as you know, but I don't care. I honest to God, COULD NOT CARE LESS.

My husband is dying in front of my eyes.

I have to call hospice today to get some professional help.

Walking is becoming increasingly difficult for him, let alone showering, dressing and other functions most human beings, including myself, take for granted every day.

He is sleepy all the time.

His speech falters more every day.

He knows he needs to have a conversation with his boys about his departure from this earth while he still can.

I have to take the boys to the park or somewhere alone today and tell them that their daddy is dying, that it probably won't be all that long now. I have to field their questions while maintaining my composure ensuring them of their own safety and stability.

And I have to turn on the TV and be bombarded with how inspiring Barak Obama's speech was or how history is made or whatever.

Know what inspires me??

This:

This is a true hero. He may not get camera time, but he is a better man with more strength, dignity and character than ANY single person who ran for ANY office yesterday.

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progression

Brian's condition has begun to deteriorate further. It is difficult to measure and grasp a gradual change when one witnesses something each day. I equate it to your children's growth. You see them each day, so you don't notice sudden changes in their facial structure, their height or their build. Then you see a friend you haven't seen for a few months, and they point out what has been so obviously occurring right in front of you.

Brian is weakening. He is tired more often. He is more irritable. His headaches still come and go, but when they come, they are vicious. The pain is nearly unbearable, but today we were prescribed a medicine that I believe should do the trick with alleviating that pain. Also, he has begun to have mini-seizures. He sort of looks off to the side for a few seconds, and sometimes his head bobs a bit, or his eyes roll back in his head. The mini seizures just began this weekend, but he had one today in the doctor's office. He is gradually getting less stable on his feet. He started to walk slower last week. He then began to brace himself on walls and furniture as he walked. Today, when we were at the doctor's office, he requested a wheelchair because he did not feel steady standing or walking.

Brian's parents and I have begun to educate ourselves on what happens next. How will Brian progress? What should we expect? He is having another MRI tomorrow. In Brian's current state, he feels too weak and tired to do chemotherapy. If the MRI shows further rapid progression, he will most likely be finished with all treatments and be made to feel comfortable at home. We are trying to set ourselves up to handle the situation at home. Brian's dad is getting a wheelchair today for days when Brian is weak. Unfortunately, we do not have a mainfloor bedroom or full bathroom. Therefore, Brian's dad is also investigating a lift for the stairs.

According to the doctor, if this is tumor progression causing Brian to become more symptomatic, which seems likely at this point in time, we can expect Brian's symptoms to become worse - his right side weaker, his speech worsening, his stability becoming unsteady, and a tremendous amount of fatigue, sleeping a lot. The seizures and the headaches should be able to be controlled with different and increased medications.

I have begun talking to a counselor about life at home - discipline, what and how to tell the boys, visitors, help, etc. I feel good about most of the choices I have made so far and appreciate all the help I am now ready and willing to accept.

In the end, right now, I just want to enjoy each good moment, spend as much time as possible with Brian, and take care of my family the best way I know how to do.

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Brian's Birthday

HAPPY 36TH BIRTHDAY TO THE MAN OF MY DREAMS

my hero


my inspiration


my touchstone


my confidante


my best friend


my balance


my companion


my partner


my better half


my pride


my everything


my encourager


my joy


my support


my here and now

my sanity


my provider


my breath of fresh air


my LOVE


my reason to ....


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