2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

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Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

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9 thoughts on “2011. So far, not so good.

  1. Luann

    I agree…it seems like whenever I’m in the hospital watching a loved one suffer, it’s totally exhausting. I can never manage to get anything done. Reading, emailing, anything that takes brain power is too much. Knitting is good — as long as you don’t want a pattern or any fancy stitches. At least it keeps your hands busy.

    Here’s to a good day tomorrow… Hang in there.

  2. ohhhhh, darn another mother of time wasted in deep thought. That is how i spend most of my days. I can’t do much else, just think how thoughtful your cards will be when they are done, LOL.

    I know your not big on religion, but if your not caught up in all the whys – you may be able to see the work of medical miracles and I think there are plenty of believers in your following, just have faith in their prayers. It isn’t a cure all for Capt. Snuggles, but it is a start since he battled and won one victory when he wasn’t expected too. REMEMBER, small baby steps and one hour at a time – i don’t know if you are able to compute beyond that and people do understand.
    Be gentle on yourself, breathe in and breathe out. I am praying for Capt. Snuggles.

  3. Hi there – My days seem about the same. They all kind of run together and I have so much I could be doing, but don’t have time to do. Yet, I sit and wonder what I do all day.

    I’m so sorry to hear about capt snuggles having a bad day. Praying for you guys everyday.

  4. Oh, this reminds me of my days in the NICU. I spent day after day after day just staring into those incubators, waiting for rounds or the next diaper change. My mind was just too numb all the time to do much of anything. I think that you have to do whatever you need to do to get through this and if staring into space is it then so be it.
    One thing that kept crossing my mind as I read this today is… do you ever get to hold him? My heart just breaks for you when I read of the setbacks and can’t imagine how hard it is to keep your spirits up. I am here, hoping for you and for miracles as always.

    • oh Jessica – no, I Never get to hold him & it’s heart-breaking, day after day to watch him and not be able to scoop him up in my arms. Maybe that’s what I’m day dreaming about!

  5. Tonya Fisher

    My goodness. Amy, I am sorry to hear the news about the adenovirus again. Poor little guy. I feel the same way when we are in the hospital with Isaiah. Be easy on yourself because with little sleep, stress and worry…time is sure to go by you. It still does for me. 😦 Praying for you and baby as always. Love You and if I can help with anything, please don’t hesitate to call.
    Tonya

  6. Sairah

    Amy,

    Same would happen to me…complete zoned out and the days would just pass by and we would come out of the hospital after a week, and it was like a time warp…bills were still waiting though, (snort)! I’m sorry, wish I was there to give you a hug…I’ll send a virtual one: (((HUGS))). Your little man has shown how strong he is, and so have you! You both are in my prayers!

    <3,
    Sairah

  7. dysfunctionalsupermom

    Why are you so hard on yourself, love? Who do you think is judging how you spend your time? Which of us, in the blogosphere, on FB, on Twitter; while watching our little ones run around at home, on our own couches, sleeping in our own beds…have the right, for one damned minute to tell you how to manage your time?

    NOT ONE.

    How many times have you been through this? Too many. Your mind and heart and soul are weary, and it is OKAY for you to space out and waste time and daydream and wish and hope and think or not.

    You are allowed. And no one…NO ONE, should tell you different.

    When you are ready for us, or iTunes, or FB or Twitter, or NetFlix, guess what? We will all be here.

    We love you. I love you. Don’t give up yet.

    p.s. Be greedy. He’s your son, you’re entitled.

  8. Luann

    OK, so I’ve been thinking about the “greedy” comment and wondering if sometimes we can, indeed, be too greedy with our desires for our loved ones.

    This may be a little heavy on the religious side for you, but here’s my thoughts. I believe that someday Jesus will return to earth and make all things right, all things new. That is why Christians call him the Redeemer. He will redeem everything bad and make it good.

    And I believe that in the heart of every human, whether they believe in Jesus or not, there is that yearning for redemption. The desire for wrong to be made right, for sick to be made well, for crooked to be made straight. We were not made for this broken world of sin and sickness. We were made by a good God, and his image is imprinted in our hearts, on our souls.

    So is it greedy for you to want more for your baby boy? Absolutely not. It is your innermost cry for wholeness, for redemption, for healing. I call it “shalom,” which is translated from the Hebrew as peace, but also has a much richer meaning…wholeness. Wholeness of mind, body and soul. We experience foretastes of shalom here on earth, but we won’t know it fully until the Redemption.

    So…today I’m praying for many foretastes of shalom for both you and David, and that they will come from unexpected places…when you least expect it…so that you will know that it is from the hand of God himself.

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