Saturday, March 14, 2009

Eyes Wide Open

Since my last post, Brian has become increasingly confused and fidgety. He had not slept at all until about 9:30 this morning. That means from 9:30 on Wednesday morning to 9:30 on Saturday morning, he had slept a total of about 5 hours.

Upon hospice orders, we gave him Lorazapan/Ativan to help with restlessness. It appears after two night of this and increased doses of Lorazapan/Ativan, he is having an exact ADVERSE reaction to the drugs. Within a half hour of the dose, he is even more jumpy, fidgety and agitated than before. An increased dose simply exacerbated the problem, exponentially. We are now moving to another drug called Haldol. See ya later, Ativan.

Some very loving and caring relatives stayed the night last night so I could sleep as I was supposed to take the kids to their soccer games and to meet my mom to get the kids to St. Louis today. Well, when I realized Brian hadn't slept at all, I woke around 4:00 and laid with Brian, praying for peace to come over him. It was as if every time he would start to fall asleep, he would jerk and jump and convulse a few times and then his eyes would roll and he would start talking again over and over again.

Yesterday, Brian had a sudden surge in appetite. He ate a hamburger, half a milkshake, some sausage, an egg, a piece of toast, a pancake and some vegetables. He also drank quite a bit.

As of right now, my boys are in St. Louis being spoiled rotten by aunts and uncles. There is a birthday party scheduled for Grant and I truly believe this is the best place for them. I can't believe how much I relaxed and how free I felt knowing they were with people who know them and love them and are keeping a constant eye on them for a few days. It is liberating for me, so thank you to those of my family that I know desire to be with Brian and me, but are filling the needs of my children which is therefore helping Brian and me. I hope you have fun doing it.

Right now, Brian is sleeping peacefully for the first time in a few days. Tonight his brother is going to stay over helping out. I intend on cleaning up Brian and changing his bed. It is a two person job and a complicated one at that.

Well, that is about it for now. I feel terrible that I don't have a birthday post for Grant. I have it written, but have pictures that I need to insert as well. Maybe I will get it finished later.

I apologize this post is a bit all over the place. The last two days have been exactly that - all over the place.



  1. Seems like each new day has a new challenge for you and your surroundings. You handle everything so well. You are one of my rol models! We KEEP BELIEVING and keep praying for you. I checked up on Grant's last year's birthday, that was a beautiful post! Love you, Monika.

  2. I agree with Monika, I look up to you as well, you are one of my role models on how to handle something so difficult so well and giving God all of the glory for any of the little graces or miracles he puts in front of you during this time. I keep on praying for you guys and I hope that Grant has a wonderful birthday with his aunts and uncles and cousins. Love Jessica

  3. I am amazed you can keep us updated....I keep you all in my prayers and will always. (no, you don't know me)

  4. I know you don't know me from Eve, but I wanted to let you know that I read your blog every time it's updated. I normally lurk but wanted to reach out and let you know that I'm praying for you, for Brian and for the boys.

    Please remember to take care of yourself while you're taking care of everyone else, and know that there are strangers out there (hi from Portland, OR) that have you and yours in their heart.

    I'm glad that you know the LORD has a greater plan for us, and the promise of things greater than we could even imagine.

    In Him,

  5. I'll continue praying, hon!

  6. Please don't apologize or beat yourself up--you're doing a great job in a next to impossible situation. It's great to hear about Brian eating and getting the med thing straightened out.

  7. I continue to keep you in my prayers. I continue to pray for stength, comfort and peace...and I am still praying for a miracle.

  8. So strange. My mom hasn't slept at all the last two nights, but a little bit in the early mornings. Same thing with the sleep RX! Isn't it just confusing to know what to do? Praying for sweet sleep/rest and serenity for us all.

  9. Hi Angie,

    I'm always glad when you have the chance to post. I'm thinking about you and praying every day.

    Still believing.

  10. Angie,
    Wanted to let you know that we enjoyed today so much! I am so happy to be able to help out by having a birthday party for Grant! Jane said this was the best birthday party she had ever been to, and I am pretty sure she was being completely serious. Hope you have a restful night! Love you!

  11. I will pray that you both finda peaceful night of sleep tonight and more upturns tomorrow!

  12. Angie you are amazing...HUGE HUGE Hugs, cousins by marriage. Mary

  13. Praying that you both get sleep tonight.

  14. I am so glad that you have help and support from family members. You don't have to go through this alone. Praying that you will get all the rest that you need and that God will strengthen your body and your spirit.

  15. Praising God for the appetite and sleep,
    Praising God for a praying wife, speaking God's most powerful words. Peace of mind, Peace is flowing like a river flowing out of you and me,
    Peace is flowing like a river, setting all the captives free.
    What is held captive? thoughts,paralyzing the body, mind and soul.
    Not anymore, the peace is flowing thru the mind, body and soul, to rejuveline the whole total Brian. God is at work through the night, bringing Brian and Angie rest while He is watching over them. Happy Birthday to all of you. You are celebrating in the love of the Lord.
    Love you Marjo

  16. Angie, if it isn't one thing it's another. I'm sorry. Haldol won't help with controlling seizures. Is valium a possibility? I hope the boys are enjoying their special trip. Get some rest when you can. When Brian sleeps, you sleep too. Let stuff go until later, this work is an exhausting labor of love.

  17. Angie, you are so unbelievably strong and amazing! I've tuned back into your blog (sorry to say I was away from it for a while) after Chris Donnelly mentioned that Brian had taken a turn for the worse. I am amazed again at your strength and faith. Please know that we are praying for you, Brian, and the boys, along with thousands of others! I wish I lived closer to help with meals, the boys, practical stuff. You are in my heart. Your noodle angel was on our Christmas tree again this year as it has been every Christmas since 1997.

    Lanie Yonker Hauschel

  18. What a roller coaster life you are living. I wish I could say something that would give you peace. Know that someone here in N.Y. is saying prayers for you and your beautiful family, every night. I hope you all get some rest. So glad your family is being so supportive. Remember to take some "me time" without the guilt. You need to take care of yourself, during this most difficult time.

  19. You're making wonderful, caring decisions, Angie. It sounds like the Haldol is making a difference. I wish your Brian more sleep and milkshakes!

  20. Angie,

    Psalm 71:1-6 (New International Version)

     1 In you, O LORD, I have taken refuge; 
let me never be put to shame.
     2 Rescue me and deliver me in your righteousness; 
turn your ear to me and save me.
     3 Be my rock of refuge, 
to which I can always go; 
give the command to save me, for you are my rock and my fortress.

    Praying that you will KNOW in the midst of the chaos and confusion that Your Rock, Jesus Christ, is the One to whom you can always go. He will not fail you, Angie. He knows the deepest agonies you are facing and is bending His ear toward you. Hold on, Angie. I am begging Him to give peace, peace, peace and rest to Brian and to you.

    Love you, sweet friend--Shawn from TN

  21. Happy Birthday Grant!

    Here's hoping you all get some sleep too.

    Hugs and prayers for a peaceful night and everything else you need right now.