Friday, November 5, 2010

Here we go again.

(Charlie, 16 months)


















We’re back in the hospital. Charlie has a cold/flu that within two days of rearing its ugly head, is already making her last cold, which she was hospitalized 15 days for, look like just a small case of the sniffles. Charlie has diarrhea, an off and on fever, and has thrown up twice, she has only thrown up 2 times in her life, so it’s definitely cause for alarm…also, throwing up is dangerous for an SMA child because they can’t swallow and can asphyxiate on it. We stopped feeds for a few hours and are now slowly administering her overnight feed to see if she gets sick again, if she does, they’ll have to put her on an IV…we’re waiting to see the radiologist in the morning who will change Charlie’s g-tube (tummy feeding port) to a jg-tube, apparently it’s a fairly easy procedure and it will send her feeds to a different part of her tummy so she can't throw up. The nurses have been deep suctioning Charlie’s throat and nose and she already has a lot of green mucus, which is a bad sign…that means it’s thick and threatens to form a mucus plug in her throat, which can cause her to choke and stop breathing, which would require us to make some big bad decisions...when we were in the hospital last time, her secretions were clear until about day 10 when she was just beginning to get the last of the junk out, it happening so early this time around really has me worried. This is obviously a pretty wicked bug.

It all feels like the beginning of the end to me. I try to stay optimistic, but I feel like whenever I accept Charlie’s condition and decide to live our/my life as if she was ‘handicapped’ instead of 'dying' I am quickly and quite rudely reminded that NO, she is not handicapped, and that we will never really be 'living' with SMA, and we will not be 'beating' SMA, we will instead be constantly tortured by it...SMA will constantly be holding us by our ankles, and threatening to drop us hundreds of feet below, into the grieving parent abyss. Morbid, I know, but realistic. I’m tired of tricking myself into thinking otherwise, only to be jolted back into reality when my baby girl is hospitalized, yet again, and her oxygen saturation machine is showing me, PROVING to me, that she is in fact struggling to breath. I think Matt and I get used to Charlie’s behaviors, thinking they’re 'just Charlie' when in fact they’re 'just SMA'. Before we knew anything was wrong with Charlie she would make this little gurgling sound while breathing fast and heavy…Matt and I just thought she was being silly and we’d get face to face with her and copy her back, not knowing that this 'game' was actually Charlie struggling to breath. Even now, I think we’ve gotten used to a lot of Charlie’s struggles, and have forgotten or brushed off what they’re really reminding us of…it’s easier that way, and it’s our way of accepting Charlie for everything she is.

All the statistics say that 90% of type 1 SMA children will die by the age of 2. That statistic has been stuck on repeat in my head all day. I’ve spent a lot of time in the recent past wondering how it happens, how does a child go from stable to not stable? What are the signs and situations leading up to it? How can we be prepared? And, now I see. We went 11 months since Charlie’s diagnosis without a major glitch…no colds, no flus…A LOT of what ifs, but nothing ever actually really happening. Until recently. Now, it won’t stop. Because Charlie never really got back to her old self (her baseline, as the doctors call it) since her last cold, this illness will wreak more havoc on her body this time around because her weak body is even weaker than usual…I’m REALLY praying that this is as bad as it gets.

Matt and I have discussed it and we’ve decided that, from now on, whichever parent gets sick , they will have to abandon the home and avoid the other and Charlie until they’re better…it has to be done…there is just no way that we can avoid passing the sickness on in a 1000 sq ft, 1 floor condo…that and Charlie is just too tempting to smother with love and kisses and it just wouldn’t be safe to do so. So, the only option is to remove ourselves from her space until we’re no longer sick and we're not putting her at risk anymore.

I love my little Pebbles, and I can’t stand thinking of life without her. Get better Char. We love, love, love you.

19 comments:

  1. Oh No! I'm sorry, no make that devastated, that Charlie has another cold! This is just awful, I can only begin to imagine how worried you both are.

    I understand why you will keep distant from her if one of you is sick. Have you both had flu shots? I"m thinking yes, but if not, please get them. They make a world of difference making it much less likely you'll get flu. Won't help with colds but sometimes you can't tell one from the other.

    Please keep us all updated.

    Big hugs to you all,

    Linda

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  2. I am speechless after reading this post....tears cloud my vision and my heart hurts for you all.
    Your love for your daughter is so raw and moving, it feels like to me that you and your hubby are in a constant state of being dragged across the pavement, never being given the chance to heal your wounds.
    All that is with in my that is good and light I pass to you.
    I pray that no matter what the future holds that you, your husband and your precious daughter will have precious time together, and though there is a storm that rages around you all, that you will find your peace, together, in the eye of the storm.
    love and light to you

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  3. Cherie - I am awake earlier than planned - and thought I'd check my blog dashboard and see who's been posting - so sad to see your title - back in hospital.

    I want you to know that I am thinking of you and your husband and Charlie this weekend - my husband and I are going away to Whistler for a much needed respite from our kids (1 has severe CP); and I will be free to pray for you, if you'd like? - for peace; for courage; for reassurance that you will make it. I cry for you - from one mom's heart to yours. xoxo

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  4. Sorry to hear that Charlie is in the hospital again. Healing thoughts headed her way!

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  5. Oh, I am so sorry that you guys have to make another appearance at the hospital. It must be so hard to see your little babe like this.
    You are so right about being sick in an apartment. We are in 1100 SQF in Yaletown...I had a cold, then gave it to my 2 year old, who gave it to my husband, who gave it back to the 2 year old.
    Not that that compares to your situation by any means, but I can understand your fear and worry about the spread of germs. This is a tough part of the year and it seems that every other person is sniffling and blowing their nose. Take care of yourself as best as you can and I hope your little sweet Charlie-Anne symptoms improve and she gets a good rest.

    xxoo

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  6. All my love and good wishes to you three. xoxoxo

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  7. Thinking of Charlie and you and your husband as you continue to support Charie through her health struggles. I am impressed by the insight you have into her health and how it effects you but amazed at the overwhelming love you show for your family. Your an amazing woman Cherie and the blogs you share are so profoundly real and each time, I struggle to hold back tears. I continue to read because I hope that by each person who reads and comments, its some level of support to you, Charlie and your husband. Prayers of strength, peace and love out to you and your family, especially little Charlie. Will also pray for this bug to be gone quickly!!

    Take Care

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  8. As our Jeffrey's (13th) angel anniversary was yesterday, your post brings back even more memories and emotions than I'd managed to scare up on my own.

    SMA is anything but easy.

    Sending big hugs and prayers for Charlie and for you -

    'Lucy'

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  9. Cherie & Matt, I'm so sorry to read that Charlie is in the hospital again. Please know that I am praying for you all to stay strong and that Charlie is feeling better soon. She is truly a sweet and precious little girl who has touched so many people including myself. Hugs and best wishes to you all............Kris

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  10. I read your post with tears stinging my eyes. I'm so sorry to hear that Charlie is back in the hospital. I'm sending all the healing thoughts that I have your way and hope that she's on the mend soon. Take care, Katrina

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  11. Thinking of you and praying every day for a speedy recovery for Charlie-Anne.
    Judie

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  12. Cherie, my heart breaks everytime I read what you are going through. It just isnt fair. Your family is so lovely, and Charlie is so precious and beautiful. I would want to run away and hide with her if I were in your shoes. Away from colds and flus. Find peace in the pure love that is between the three of you. Push the statistics away from your thoughts. You have enough weight on your shoulders without torturing yourself. The healing power of touch is amazing. You can channel it through your hands, into Charlie, have a "circle" of energy flowing, your love is so strong... It can heal. Believe in it, feel it. Look into reiki or other energy type "work" that can be done. It cant hurt, and it could help.

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  13. Cherie, just to let you know my sister Carol (you know her) does Reiki and would be more than happy to do some therapeutic touch for Charlie.

    Hope things are looking up for Charlie and that she's feeling better.

    Hugs,

    Linda xoxoxoxox

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  14. Your honesty and vulnerability astound me every time I check in with your blog. So sorry to hear Charlie is struggling again (as you both are too). But you are surrounded by a very large circle of love, prayers and support...a circle that seems to be expanding, never ending, as in the symbol of love - a ring.
    Another tip for you & Matt...at the first sign of a scratchy throat, sniffles etc, take ecchinacea every day (double up for the first week) for 21 days and keep the fluids going. Sometimes its just enough to boost your immune system and ward off the nasty bug; thus, keeping you close to Charlie. I wish there was more we could all do for you but maybe just being here to 'listen' helps in some small way. Hang in there with all of this, just one day at a time.

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  15. lots of love and prayers for u three in this time. ♥

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  16. I agree with what Heather said about Echinacea but get the one with Golden Seal (which is an anti-viral). You can get it for around $10 at London Drugs (100 capsules)in the blue bottle, LD brand. I've used that for years, double dose at the first sign of sniffles or scratchy throat & it knocks it right down. I haven't had a cold in years, so I highly recommend it.

    Hope Charlie is doing better.

    Hugs,

    Linda

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  17. praying praying praying for Charlie and for you and Matt.

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  18. thinking of you and your family. praying for you to get better baby girl.

    xo
    j

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  19. So sorry to hear little Charlie is back in hospital. Thinking of you and your family and praying that Charlie is well soon.

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