Sunday, March 15, 2009

night shift

Last night, Brian was awake again... all night. He slept from around 10am to 2:30 or so on Saturday afternoon. Up all night Saturday night. He slept again on Sunday morning from 7:00 to 11:00. However, we did not give him any more of the Ativan/Lorazapan, so he is no longer having the jerking motions and hallucinations and sudden hanging-on-for-dear-life urges. So, when he is awake, it is a bit more peaceful.

We gave him some more Oxycodone to see if he would sleep again as that seemed to do the trick on Saturday morning. It did nothing. We have not tried the Haldol yet as we really would rather him sleep at night instead of during the day. We may try tonight if he does not sleep later.

Today, he ate almost nothing. Same thing yesterday. He is drinking about 20-40 ounces per day. He is outputting WAY more than that, so I am not really sure what that means. One thing that could be attributing to that, though, is that his shunt from his brain would be draining the excess spinal fluid into the body which eventually needs to be voided.

Last night, Sean, his brother, and I bathed him. It was challenging, but we got it done. Brian is pretty much totally unstable on his feet at all now. He could not stand without total support. He felt like he was falling a lot. I had to lift his feet to get him into position while Sean would move him to and from the commode to the bed and back. He lays very sideways in bed as his sense of balance is distorted, too.

His speech is pretty poor. His voice is quiet and he makes little sense. The beginning of the conversation is okay, but he trails off to something you cannot understand or cannot follow. He wants so much and tries to be a part of the conversation, though.

He has been vomiting quite a bit, too. It is definitely worse after he has been readjusted in bed or if he has been up and down (like after the bath.).

Brian needs constant supervision as he often tries to get out of bed. I don't think he would succeed as he lacks the strength, but he often states how he is going to go to the bathroom, to bed or to take a shower while pushing his covers to the side. We have determined that the night shift is exactly that, too - a watch and not a sleep session unless he starts to sleep again.

I slept the whole night through last night as Sean was here and I knew he would know exactly how to handle Brian. I was AMAZED this morning when Sean informed me that Brian did not sleep at all and talked the whole night through.

The boys are in St. Louis with relatives having a grand time. In their first afternoon/evening, they had a birthday party, an Easter egg hunt, a dance session on the driveway to Crazy Frog, a sidewalk chalk fest, cake, party favors and a game of Ghost in the Graveyard. Today they went to the City Museum, then played Light Sabers and swords outside this evening. My family is giving my kids exactly what we need right now while Brian's family is taking care of all our needs on the home front.

Doesn't this picture of the group celebrating life and birth with my boys melt your heart?

It does mine.

The only thing missing is their Mom and Dad. That breaks my heart.



  1. Thank-you Angie for keeping us so updated on Brian and everything in your life, I check your blog a few times a day at least to see if there's anything new written on it since we're so far away and can't do much from out here in Canada to help you guys physically.

    It looks like your boys (and your family with them) are having a great time this weekend. As much as you miss them I'm sure it's nice having this time alone with Brian too. Always praying for you guys... Jessica

  2. (((Angie)))
    Prayers continue for all of you.

  3. Angie,
    I pray you both sleep all night. I pray that you feel peace. You are so loved.


  4. Angie,
    I hope i'm not butting in..Brian may be experiencing fluid and electrolyte imbalances related to an inability to concentrate urine and conserve water from his tumor. This manifests by polyuria (excessive urine output).This is a problem that occurs frequently and may be referred to as water diabetes or diabetes insipidus. In my experience, many pts who are agitated and some who even fall at night have frequent voiding and urgency issues. The need to urinate can cause alot of agitation. You may want to ask the hospice nurse about a foley catheter. I have seen this help people in the past. It drains the bladder continuously ( I know you know what a catheter is..sorry) so he won't feel uncomfortable (in theory). If it agitates him more or you are worried about him pulling it out, you can easily remove it. The issues resulting from his high urine output can and probably already are causing sodium imbalances. People with very high sodiums (which he very well could have), or very low sodiums can be very, very agitated. It's something to think about. I doubt that you can do much because the primary dysfunction is occuring in the brain, but hypernatremia (high sodium levels) may at least explain his agitation. My heart hurts for you Angie...please let us know if you need night shift assistance. Praying for you all, Cheryl

  5. It is heart breaking. I am so sorry. I feel so sorry for Brian and how sick he is and how much he is suffering. It sounds as if the cancer is interfering with his auditory nerves causing balance problems and the dizzy vertigo effects. Valium will help all of the above including nausea. I'm so grateful for his family and his brother. You needed a night to sleep. God comfort you and strengthen you.

    Lord Jesus be with this couple in a supernatural and powerful way. I ask that your presence would be tangible in their room. That they would have peace and rest. I ask that you would give wisdom and provide help. Touch them both, ease their sorrow, sadness and pain. Lord I ask that even as you take Brian with one hand, you give a gift in the other, that you show yourself in a mighty way, and a gentle kiss, to Angie, her sons and all of their families members. Tonight Lord we ask for easy peace, and rest, settle Brian down and give him sleep.
    In Jesus name, the name above every other name. amen.

  6. ps Cheryl is exactly right.

  7. Continued prayers, Angie!

  8. Oh Angie. I continue to admire your strength and grace. So glad your boys had a blast with your family. Love and prayers to you.

  9. I'm continuing to pray and think of you.

    The photo of your family lifts my heart. I wish you were there too. Heck, I wish I was there too.

    Still believing.

  10. {{HUGS}} and as always, prayers.

  11. Yes it does both melt and break my heart. Hang in there, sweetie.

  12. Oh Angie! Wish I could come over and give you a hug. Know that I think what you did with the boys was absolutely the right thing to do. And yes, it would break my heart too.

    Hang in there, and know I am thinking and praying for you and your family!

  13. Look at that great extended family support you have.
    What love.
    Peace and prayers.

  14. Angie,

    I believe that God is blessing you abundantly and will continue to do so. My prayers go out to you, Brian, Gavin and Grant that you will experience the love all of us send to you.

    Your sister in Christ, Karen

  15. I am so glad that you are blessed with a good family. Going through all of this must seem unbearable at times, but going through it without support would seem impossible. I pray that you will all be blessed with comfort and rest right now.

  16. Oh sweet Angie,

    That pic of your family with the boys made me instantly loose it. Through tears...I feel your pain at missing this celebration for are an AMAZING mom to those boys, but right now, Brian needs you more. As heart wrenching as it is to miss know where you need to be. My thoughts and prayers are contantly with you and Brian right now...for some rest, more comfort, and ALL KNOWING PEACE as you navigate this final road Home for Brian.

    You know how much "your girls" love you and long to be near you, help you, hold you, laugh so hard we all wet ourselves, and anything else you ever want or need...we will ALWAYS be here for you...Brian...and those precious boys.


  17. Oh Angie...Please know I am praying for you all.


  18. I have never met you, but somehow stumbled upon your blog. I admire you, Angie, so much. I also admire Brian for fighting and wanting to be with his family as long as possible. I'm glad your boys are having a fun time with your side of the family. I pray for peace for your family through this difficult time.

  19. I wish I had the words, the ability to give you the greatest comfort and peace. I pray that The Lord grants this instead. All my love, all my prayers for all of you. And a special birthday prayer for your son as well.


  20. I can't imagine all you are going through. I think Cheryl up there is a sweetheart, sharing all that info with you; and I second Karen's suggestion to try Valium for the balance/nausea issues - I use it myself for vertigo attacks.

  21. Hey Brian and Angie,
    I just wanted to say that in the brief encounters that I personally have had with Brian, I can conclude that Brian is a genuinely, kind soul whom God's hand has touched. Most memorable is the farewell dinner he attended with Dave in Fort McMurray. We were at a "nice" restaurant and felt a bit embarassed with all five kids there, but Brian made us feel at ease as he joked with the kids, helped fetch tippee cups off the floor, ignored screaming kids and judging glances. I left with the impression of Brian as a very kind, true gentleman. Thank you for touching our lives in a seemingly small way to many but big to us. May God grant you peace that surmounts all understanding.