Friday, October 11, 2013

October 11, 2013

Well, following Brynn's birthday the nights got harder at home- we were hardly sleeping at all and her pain was getting harder to control. We were spending alot of time on the phone with Calgary and increasing the fentanyl that she was on continuously.  They decided we better come up on tuesday since she needed her port changed anyway and they would switch her from fentanyl to hydro morphine. They would do this for a couple of reasons. One is that there is a shortage of fentanyl right now and they were having a very hard time searching all of Calgary to find enough for us at home. We even had a pharmacist in Lethbridge that was kind enough to drive up Sunday night to Calgary and bring more back for us!  The other reason is that she could be getting resistant to the fentanyl and therefore requiring more and more to get on top the pain. We drove up with the whole family and had one extra bag of fentanyl left.  She was going through it pretty quick and I was prepared to change the IV bag on the way if we ran out but she was surprisingly pretty comfortable and we got to the hospital before her bag ran dry.  Usually changing her port is a pretty quick process but lately with the steroids she is on its getting harder and harder for them to access her.  They took her off her fentanyl and then it took quite a few attempts to access her so her pain was getting pretty bad. They switched her to the hydro morph and they were trying to figure out the dose she needed.  That was one of the hardest days we have ever had.  She was in so much pain the rest of the day and we were trying to catch up to it.  It literally feels like my heart is being ripped out of my chest when I have to watch her suffer and can do nothing but console as she endures.  We got literally no sleep that night and each day since then has slowly got a bit better pain wise but she is definitely not doing well.
It's probably a blessing that when we left on Tuesday to come up here that we assumed we would change meds and be back in a couple days for thanksgiving weekend. Yesterday as we talked with the doctors here at Rotary Flames house we asked about that possibility and was told that we were here to stay now.
Last week when Brynn was having a very hard time mentally I had her write one blessing down at the end of each day.  It was amazing to me how easy it was for her to come up with something even when she was having a hard time smiling.  I have to remind myself of that and follow her example as I'm trying to not be mad that we aren't home with our family for thanksgiving weekend and counting all our blessings together.  I know the Lord is blessing us with little miracles everyday.  The big miracles that I'm asking for may not be the ones I'm receiving but I know he is aware.  I feel very numb right now as we are in survival mode to get through each day.  Yesterday I felt guilty that I hadn't cried yet that day and then I realized that I'm so aware of giving Brynn everything she desires right now. She asks constantly for us to not shed any tears and somehow I'm being blessed to be able to do that for her- in front of her.  However this morning as I was in the shower I couldn't stop crying. It's the one place I can just uncontrollably sob- get it out and then try to get through another day.  I'm realizing how precious our time is and am so grateful to have our family all together up here- even when Reese is driving us crazy!  I feel her slipping away and it's impossible not to want to hold on as tight as I can- even though I know it's probably not the best thing for her.  Sometimes I'm selfish like that.....I just love her way too much<3

9 comments:

  1. Oh Christy, my heart aches for you. I can not even imagine the pain and heartache. I'm so, so sorry. Your beautiful daughter is an inspiration to so many. I'm praying for you and for your family. May the Lord bless you with peace and comfort and miracles. I love you so much.

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  2. Christy, all I can think of to do is give you a great big virtual hug, the kind I wish I could give you in person, and tell you how very sorry I am. You have always been one of the most sensitive and loving people I have ever known, and I know Heavenly Father was always preparing you for this time. I continue to pray every day for the miracles you seek and the strength you will need to get through whatever you face.

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  3. Cindy, Dylan &amp; MikeOctober 12, 2013 at 11:52 PM

    Christy & family my heart aches for you so much during this difficult time. You have shown so much strength and courage throughout and are truly an inspiration to so many. We continue to keep your family in our thoughts and prayers. Sending angels of comfort and peace

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  4. Christy I just pray right now that you will feel the comfort and peace of our Father surrounding you right now. That you will feel his arms holding you ever so closely to him right now. Just know that he loves you so much honey and that he holds you. Just let the hurt inside your heart come out as he holds you close and reminds you of his immense love and care of you. Daddy just please wrap your arms of love around precious Christy right now. Minister to her right now daddy, manafest yourself to her in a way that she has not yet experienced with you. Show her how much you love her daddy, let her feel you holding her. Please my dear father let her feel you holding her right now. Christy you be blessed right now with the love and comfort and peace of the Father just the way that you need to feel him! He sends you a huge daddy hug right now. Take it from him, he loves you!

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  5. Christy you do not know me but I have been following your blog. Came across it one day. I know it must be strange to you having a stranger comment but I do care. I felt that Holy Spirit wanted me today to post the above comment on your blog because he just wants to remind you that he loves you so much, that he even understands honey. He understands. Just know that and please just let him hold you and love you. His arms are wide open to you.

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  6. My heartaches for Brynn and what she has to go through and also your whole family. It is not fair that anyone has to suffer that much pain. She is such an example to all that know her. My family all loves her and will keep you all in our prayers. Give Reese a big hug for me and tell her I miss her smiling face and so do my puppies.
    Love Cam

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  7. Christy and Kevin & Family.. you are so deserving of a good shower cry and we will never know what you are going through exactly, but know that this entire town and neigbhorhood loves you and your family. I was Brynn's Primary teacher when she was first diagnosed and I remember well how smart, sweet and close to the spirit she was even then. I know this experience has had to make your family rely on that. Keep relying on what you know to be true.You are being the best parents by just being there with her. I told you how hard it was for me that day to see Kevin and her snuggling at church. Be thankful for the blessings of having an eternal family.I know you love her so very much.Don't think of yourself as selfish.. but, if it helps, I know two Grandpas who love her just a much. Hugs to all of you. ~The Kurtz crew

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  8. I love Brynn! she rocks!! I'm thankful I could know Brynn.!
    Brynn is always smiling and nice!! from,
    Brooklyn.torrie
    team brynn

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  9. I love Brynn! she rocks!! I'm thankful I could know Brynn.!
    Brynn is always smiling and nice!! from,
    Brooklyn.torrie
    team brynn

    ReplyDelete