Wednesday, September 29, 2010

Contradictions

I am about to contradict all of your comments to me about staying positive and strong. Well maybe I am still strong but I am now going to focus that energy on being negative and aggressive. I am angry. I am sick of this stupid cancer. I am sick of having to watch my baby suffer EVERY SINGLE DAY. I am sick of the thought that we could be here for another week or maybe even two, just to prepare to come back to get more chemo that could have the same effects on his fragile little body. I am sick of the fact that we do not know what is wrong with him. I am sick of the "oh he could have this, or maybe this or maybe this" and then getting results that say it is not one single one of those things. How can we save his little life? How can we get him better? How come nobody can figure it out? Why? Why do I have to spend so much time away from my kids? I loathe all of this. I am angry. What kind of refiners fire do I have to go through? I don't know if I can take any more of this heartache. It just makes me mad. And then it makes me mad to be feeling angry. This is not me. I want my family back. I want my healthy son back. I do not know how much more of this Everest I can climb.
Rant over. Now I will just give you the facts. Last night was ANOTHER rough night. Abdomen xrays show that Typhlitis is not the case. There are no signs of it. Chest xray shows "possible" pneumonia. He is on oxygen with a bubbler, which provides moisture so that his poor little nose does not dry out. His temp continues to fluctuate between mid grade to high grade. Diarrhea all over the bed in his sleep three times last night. This entails, stripping his poor, frail, shivering body down, scrubbing him down as he stands there exposed. How embarrassing for him. How exposed he must feel. C-diff testing which takes 24 hours, and toxin testing which could take 48 hours. Barfing all night. Mucousy, black vomit in larger than normal amounts. Rapid breathing. Normal respirations are between 18-20 a minute, his are 45 a minute. His pH are higher than safe. His CO2 levels low. He has become basic because he is breathing so fast. CO2 is acidic and since he is breathing out so much he is losing acidity causing his body to become basic. Still waiting for docs to decide what to do about that. I DO NOT want to go back down to PICU. If it means making him better or saving his life then of course it is the only option, but we feel protected down here with our "family". It is so exposed and open and germy down there for him. Blood pressures, heart rate and oxygen levels were all stable last night. Potassium is low so he is receiving more. Blood transfusion last night helped with his overall stability. I am now feeling nauseated. This is almost more than I can handle. Obviously the Lord feels like I can. Sometimes I wish we could rescind. "We decided that we don't like this trial so we are checking out, is there something better we can try to endure?" I don't think Heaven works that way. I am begging for your sincere fasting and prayers. I NEED him to get better. Please plead with us for a diagnosis of some sort so that we can get him better. I haven't seen my husband in over a week and it looks like it will be another week atleast. We NEED to be together. We NEED Spence better.

10 comments:

  1. Love you Holly,

    We will fast and pray for your family, this is the suck, I am so sorry, we love you all so much.

    Hang in there.

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  2. Holly...we are so, so sad for what you are going through right now. I hate more than anything when your kids are sick and there isn't anything you can do about it and you want to be home and be normal, whatever normal is. I won't try to know what you're feeling right now, we have had similar, yet very different experiences with hospitals and doctors, but I know it will change, it will get better, eventually! Just try to survive right now, just try to live hour to hour, not even day to day, that's too long. 1/2 hour to 1/2 hour if you have to. Remember Spence is your son, always speak up for him, fight for him with the doctors, make them work for you! They will listen, you are MOM! No one knows him like you, no one! I am here to talk if you need to, call me anytime, day or night 801-645-0713, FB me, email me hkraaima@yahoo.com. I will come down there, bring you anything, sometimes it's just nice to talk to another adult, I know, I've spent many, many hours down there watching Evan suffer! The Kraaima's hope will all our hearts that Spence will take a turn for the better very soon!

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  3. I hate this so much. Will be praying for you and thinking of him ALL DAY.

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  4. My heart hurts for you, for Spencer, and for your family. Being "strong" doesn't mean you have to "like" it. I cannot begin to imagine going through that trial, nor watching my baby suffer that way. Kind words and I'm so sorry's don't seem to even touch on the situation. Today I simply add my tears and especially many, many specific prayers.

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  5. Holly my eyes are full of tears. Our boys are the same age. It hurts to see such a sweet boy with this illness. I will pray for you, Spencer, and your family throughout each day. I know the Spirit will bring to you and Spencer all the comfort, guidance, and strength you need. I'm hoping for a diagnosis soon. You are an amazing mother. So glad Spencer has you by his side. Sending you all much love and hope for all to be well soon.

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  6. love you so much Holly! Being strong & brave doesn't always mean being happy. The fact that you haven't checked of your trial means so much. You have been so positive through all this & you are allowed to have the feelings you have. Prayers all day today & more prayers with fasting tomorrow. Team Super Spence has never been needed more than it is right now. We are pulling & praying for you, the doctors & for Spencer's strength!

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  7. I don't know you and found your blog through a friend. I have been reading and checking in on your sweet little Super Spence. My heart aches for what you are going through. Literally, aches. My sincere prayers are with you and your ENTIRE family. It's okay to get mad and be angry. From what I read here, you are a good Mom and a Mom that is fighting for her son. Keep up the fight and the prayers. You have a lot of people pulling for that little guy.

    Again, my prayers are with you all.

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  8. holly my heart just breaks for you and your family. we will pray as hard as our little hearts can for spencer and for some strength and comfort for your family. lots of love!

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  9. I pray for Spencer and your family every day. My heart is aching. I have no idea what to say. I want to be encouraging and I also want to say that it's okay that you are mad and frustrated and sick of it all! You've been so strong, love you
    Tammy

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  10. Oh my gosh, Holly, my heart is ripped. I know so much what you are going through, perhaps not with the cancer, but with the not knowing. I'm not going to tell you that God knows what he is doing...you already know that. I'm also not going to tell you it gets easier. That would be lying. I can only tell you to make the most of all the moments you can with Spence. He is an amazing little boy, and he will need all his strength and yours to fight this fight. And in the end...no, I'm not going to tell you that either. I love you.

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