Thursday, November 6, 2008

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

42 comments:

  1. yea I think I can finally leave a comment! I have been thinking of you all day hoping and praying for the best. SOunds like things are not going as planned. I hope this works and gets you more time with your man. If not I would be LIVID too.

    Keep Believing!!

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  2. Mad and scared I would suspect. You know we're all pulling for him (and you) like crazy.

    I just have to tell you how much it means that you keep us posted. I know it's for your family too, but even those of us who've never met you in real life really care about what's happening with you and it is kind of you to let us know.

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  3. Hugs. Stay strong...and mad if it helps. Keep Believing.

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  4. Angie, I am praying for you guys. Hope all goes well with Brian and you are all home soon enjoying each other.

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  5. you've been in my prayers all day. Believing that they have been able to do the procedure by now and Brian will have a great restfull night. Hopefully you will get a little bit of shut eye yourself. Seeing the room filled with angels, who are just singing their hearts out, Singing praises, singing happy songs, your very favorite songs just for the two of you.Bringing you love and laughter holy laughter.
    Angie, sit there and sing to Brian,most calming and soothing to the heart and mind.
    Love you both, we're all here keep on,keeping on in the believing department. Marjo

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  6. I am praying that all goes/went well with the procedure and that it is a huge benefit to Brian and ... that he gets something good to eat - SOON!!! Take care and hang in there, Angie - you are doing great!

    Kellan

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  7. Sometimes the whole "medical thang" makes you want to pull some hair out (of someone else's). Hope Brian comes through this with good results. Had similar thing for Mom a few months ago, but her oncologist did a spinal tap in the office to remove fluid build-up. It really IS like living in a SCI FI movie. Cyber hugs and real live prayers.

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  8. I found you through Jody Ferlaak's blog...I will be keeping you and your precious husband and boys in my prayers. I can't even imagine what you're going through but I know Someone who can.
    In Him,
    Marcie

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  9. Always in my prayers. You are such an incredible woman Angie. Please let me know how I can best help you and your family right now!!!
    Ashley Gleason

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  10. I am thinking of you. And hoping that the procedure will help Brian.

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  11. I clicked on your link by a friend of yours that left a prayer request at Jody's Nitty Gritty blog. I can't imagine .. I just want to pray for you that the lord will give your entire family strength. He will uplift all of your spirits and let you treasure the time you are able to spend together .. moment by moment. I pray for your children that the lord gives them strength and holds them close to his heart.

    Thank You and God Bless!!

    Stephanie Tanner

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  12. What to say except that I am a friend and fellow Cat employee from Global Mining, and I've thought the world of Brian since I met him about 6 years ago. He has helped me keep perspective, and I continue to be impressed every day by both of you.

    My Dad has a similar shunt for other reasons, and it works well - I hope it helps Brian.

    Praying for you all!

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  13. Mine and my families prayers are with you. I hope yall have a peacefull time together. I clicked on a prayer link from "Who put me in charge of these people?" A lot of people are pulling for yall.

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  14. STILL BELIEVING!!!!

    STILL BELIEVING!!!

    STILL BELIEVING!!!

    LOVE

    HUD

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  15. Prayers to you and your family.

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  16. WE HAVE TO BELIVEV!!! Faith and hope are the only things that keep us going. I say "us" and "we" because by dear husband and father to our 7 little monkeys is struggling to fight stage 4 colon cancer. His liver is not functioning properly and fluid is building up in his abdomen. My prayers are with you and your husband, WE HAVE TO BELIEVE!

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  17. that has got to be the most frustrating thing!!! i remember going thru moments like that w/ my daughter when she was in and out for a yr straight. we would sometimes get sent home only to have a message waiting that we had to come right back. ...having to make her go hungry for 12-24 hrs straight...ok, talking about this is making me feel kind of down knowing what your going thru right now. just want you to know that i know the exact words i'll be using when i'm praying for you guys!!!
    <3

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  18. I'm so glad that he had relief from the drain. What a blessing. I'll try to call you again today, but I know how busy you must be right now. It was good to talk to your mom. I'm so glad that she's there.

    Hang in there, we are praying for you. Janell

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  19. Sorry that it's been such a hassle. Hopefully, though, it will all be SO worth it. Glad he's already showing good signs. xoxoxo

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  20. God Bless you and yours!! Visiting via SITS.

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  21. Oh sweetie. I wish I could be there to yell at a few folks. So sorry.

    SO GLAD that this has helped.

    Still thinking, praying and believeing.

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  22. Praise God for the good report on Brian,
    feeling better already. In ICU "IN CARE UNIT"
    getting some well needed rest and tender loving care, I see him resting in the arms of the Lord,
    the blood of Jesus flowing through every single cell in his body, having brought restoration, a peace of mind, calming and reassuring words and thoughts coming to him by the Holy Spirit.
    Brian is hearing, Keep Believing, Keep believing,
    Keep believing in the Goodness of the Lord,
    The Goodness of the Lord.
    Love you Marjo

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  23. I am praying for you and your family.

    May God bless you all.

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  24. Angie, I know that I was led to your blog by God Himself. I saw someone's comment about your situation on someone else's blog and immediately typed in your blog address. I spent about two hours reading your heart last night, so moved that I couldn't pull myself away until very late. You are an amazing communicator. So brave, so honest. I spent much of the first hour tossing and turning in my bed praying for you and Brian and your sweet boys. I will continue to pray. This is a God-given privilege for me. I wish I could support you some other way, but today I am asking Jesus to give you not a cup full of peace, but a river of peace that flows from the throne of God Himself. I am so touched by your unabashed love and admiration for Brian. He must be a special man indeed. I cannot begin to understand your grief. But I will pray for you, my sister. I will be praying Romans 12:12 over you today:

    Be joyful in hope, patient in affliction, and faithful in prayer.

    Your blog shows off our Jesus very well. Thank you for your transparency. Praying in Tennessee, Shawn

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  25. I am so glad for the relief that Brian is experiencing! I will continue praying!

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  26. PS stupid lack of communication b/t dr.s office and hospital...we had the same problems when my grandfather was in the hospital

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  27. There was plenty of blame to go around when Carter was born/died. I could have sued the hospital like crazy, but decided that my big mouth could get some change done for the better...for another family...instead of just a quiet payoff.
    You know how hard we have been praising the LORD for Brian's relief...and you know the enemy is behind all the delays and frustrations you all have had...he doesn't like the LORD being glorified by your good news, and all the praises that were going to heaven yesterday...and always on your behalf. Don't let the enemy steal away your joy for Brian's relief today...relish in this extension of time you all have been given...and know we are NEVER going to give up on the ultimate good news of a miracle!!!!!
    LOVE YOU ALL,
    Kris

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  28. Angie..I just finished reading the posts that I have missed over the past couple of days. My heart aches for you.

    As I have stated over and over..you are in our prayers and always on my mind. I am happy to hear Brian has some relief.. that is some light.

    Much love you to you Angie..

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  29. Praying for you, your hubby and your precious boys. May God work miracles!

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  30. I've been keeping your family in my heart - I wish you all some peaceful days to come & enjoy together.

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  31. We're happy the drainage brought Brian some relief. We think of the four of you daily.

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  32. sending a bunch of hugs, for you to share with
    anyone you feel like hugging.
    Know you were hugged by me first :):):):)
    (X) (X) (X) (X) (X) (X) (X) (X) (X) (X)
    Love you Marjo

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  33. Grrrr.
    Sometimes medical offices are second in ineptitude only to government agencies!
    Go get 'em girl!

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  34. Angie I am just so touched by your family. Your strength and struggles reach me on a level that I cannot describe. I promise you that I will pray for you and Brian and those beautiful boys everyday because I can. Also, on a lighter note, I think that you are an incredible writer...ever consider writing a book? Take care, and in your own words, "KEEP BELIEVING".

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  35. know that me and the bible study crew are still praying for you. praying for guidance, praying for time, praying for a miracle.

    we were talking about psalms of lament this week and i found it very moving when thinking about the place where you find yourself.

    bring it all to God, he knows anyway. be angry, question him, make demands, it's all good. just keep that dialog open and ....

    yup, that's right....

    KEEP BELIEVING

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  36. Hugs..prayers..believe..faith..
    You can do this.
    KEEP BELIEVING

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  37. Angie I am so glad for the relief Brian is feeling and thankful that your mom is there with you to help you out. I am praying for all of you and especially the boys at what must be an incredibly confusing time for them. May God's peace wash over you and give you the strength you need to do everything you need to do.

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  38. So sorry for all the unnecessary hassle you had to go through. I am however grateful that Brian felt immediate relief.

    Thinking of you often.

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  39. Praying, praying, praying for all of you.

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  40. So glad to hear of Brian's relief from the drain. I will continue to pray for wisdom and guidance for your next steps. So glad your Mom is here right now. Praying for all of you always!!!!
    Ashley

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  41. there is a whole country and world out here praying for you guys! Keep On Believing

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