Thursday, November 6, 2008

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.



  1. Praising God for the transformation of night having turned into day. That Brian is doing so much better.
    Also thank Him for the sense of humor in that how you can write this report.
    Angie you talking about the 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.
    I can so invision that senario, the blips and the beeps. I had a room mate after my major surgery a few years ago, the roommate was so bad the nurses didn't want to come in the room and exactly offered me another room.
    Praise God for Brian being in a different room now.
    Praying for Gavin, that his little tummy settle down, that Jesus keeps him company while daddy is in the hospital.
    Keep doing your best by speaking up and letting them know you are ready to go home with Brian,
    away from the blips, beeps and bells.
    Keep Believing Love you Marjo :):):):)
    (X) (X) (X) (X) (X)
    tell your Mom "Hi" for me she's a special lady,
    she thought her daughter very well.

  2. Sending good (quiet!nonsnoring)thoughts!

  3. I am still here - watching and listening and praying and waiting! Love and hugs - Kellan

  4. I know you don't know me, but I've been thinking about you and your husband all day today. I can't stop thinking about you, so I pray. And then I pray some more. I'll keep checking the blog for more updates.


  5. Hope you guys get to go home soon! Hospitals can be so frustrating!

  6. Angie, Have been praying since I first "met" you last night. Prayed much today for peace. I will continue to beseech our God to get Brian out of the hospital and back into his own home. You have given me a new perspective on life. Thank you, my friend. Will continue with fervent prayers. Shawn

  7. Angie,
    I'm praying for you and your entire family. You are in my thoughts.


  8. Angie,

    Praying every day!!

    Love, Mike

  9. Hey Girl!!!
    I know I talked to you today, but I just have to check up on you guys. I'm so frustrated with the hospital right along with you...and that drain/level thing...HELLO...we send people to outer space and we can't figure out how to make hospitals with private rooms, and ways to accurately drain something besides gravity...are you kidding me! Keep that awesome sense of humor at all the STUPID questions from every person in a blue,green, white,etc. coat on that comes in your room wanting to LEARN something...tell them to go watch ER re-runs or something.
    ANyway, I'll call you tomorrow...and hopefully our Gavin will be wanting CHOCOLATE tomorrow like his normal self. Ella(Shawn's) had this pukey thing on Tuesday, but it only lasted for 24 hours...lets keep praying for that...anyway...this is YOUR blog...and I'm writing enough to make one myself...
    LOVE YOU ALL...give Gavin and Grant...and especially Brian an extra squeeze from us!!!

  10. Hi Angie.....I have read your entire blog and have been praying for you and brian. I find myself looking at your blog waiting for updates several times a day. You both have touched so many lives. I was so happy to read brian has had some relief. Prayers for gavin tonight also. God bless you and keep you in his care.

  11. Angie,
    Glad to hear that Brian has gotten some relief from the procedure yesterday. I find myself checking your site many times a day and say a prayer each time that you are all taken care of. Looking forward to seeing you when you all get home - good thoughts and prayers are coming your way!

  12. Angie,
    What a roller coaster of emotions these past couple days! We are so glad to hear that Brian's feeling a little better and hopeful that he will continue to make progress! I can't stop thinking about you guys and just wish I could come up with a cure or something to make this all better. I will continue to pray like crazy for Brian and your entire family and medical team.

  13. I am so glad that there is some positive news even if it is mixed with frustration. I will keep believing.

  14. Hello Angie,
    Just caught up with the blog. Wish Brian a happy belated birthday from us. Hope he gets home soon.
    Patrick, M.Elena, and Kids