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Tuesday, February 1, 2011

The Plan

Wow, you guys are awesome. I have received so many comments of love and concern. I DO realize that culturing pseudomonas is minimal compared to some other CFer’s especially, Skye, Logan, who is being admitted tonight for his g-tube, and of course, Conner. But it was a hard day for me and I appreciate everyone joining me in the trenches.

I knew it was not going to be good news before our NP even called me. I had called her early yesterday morning, eager for the the results. When I hadn’t heard from her by noon, I knew what was coming. Our NP is awesome. She wouldn’t call me just to tell me the results. She wanted to have “the plan” figured out. Of course that meant she’d have to talk to Dr. N before she called to tell me.

That’s exactly what I got. She gave me a moment to sob into the phone before telling me that we were going to start a 2-month straight Tobi cycle through the eFlow nebulizer. This will help cut down Ben’s treatment time especially since he does Tobi after his vest. Dr. N believes Ben kicked pseudo the first time, he just unfortunately, picked it up again. Therefore, we are starting out on Tobi again.  I don’t know what the long term plan is (IVs, Cayston) and I’m not trying to figure it out now. We’ll just take it one day at a time. Ben will not start Cipro (an oral antibiotic), like some CFer’s who culture pseudo, because he says there’s no significant research to back up the fact that it helps. However, if he cultures it two months in a row, I’ll request we start it. Can’t hurt.

The pseudomonas growth in Ben’s culture is “minimal” compared to the “moderate” growth he had when we entered the hospital in Aug ‘09. There is a good chance he can kick it with Tobi since we caught it so early. I am so thankful I am in tune with Ben, and picked up on the signs.

I think the hardest thing for me, is that I finally felt like we were “ahead” of CF for the first time EVER. Ben has yet to have a cold this winter and I thought that we could make it through with little to no sicknesses. I have been extra vigilant with hand washing, treatments, not going around sickies, cutting down on time around other kids, even getting extra vitamins in. But clearly, I can not protect him from everything. The results were like a slap in the face, that I can not control everything and that CF has the upper hand. This too shall pass though, and in a few days I’ll be back to myself.

Like I said before, I can’t thank people enough for their encouragement. The CF community is there for us when I need them and that makes a world of difference. Of course, the smile on this little guys face, during his impromptu play date yesterday, keeps me going as well.

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(please excuse, the mashed up animal cracker in his mouth Smile)

7 comments:

  1. You are great parents. Little B will rock through this bug like nobody's business!

    Peaceful things and lots of love. :-)

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  2. My heart breaks for you, Margaux. So sorry about having to go through this again. I know it's as hard on you as it is for Ben. Thinking of you!

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  3. I feel your pain. It seems sometimes that CF never "allows" us to get ahead of their game. Hang in there, it sounds like you have all the cards with you...time to kick Pseudo's butt again. Our clinic did the same thing-told us that research has shown that Cipro doesn't really improve it overall. I requested it regardless because I wanted to do everything possible. It sounds like he doesn't need it-that it is a small strain. YOu are great mommy and ben is lucky to have you. Don't let CF take you down...I have some stressful days ahead as we wait for our results. THinking of you all.

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  4. Hey Cuz! I like what Josh had to say......Your Manny will knock CF's teeth out; it, unfortunately, will just be one tooth at a time.

    When I read your post I thought about the bent but not broken reed in Scripture. You are beaten down, but not beaten. Down but not defeated.

    And when you are feeling stronger, meditate on the fact that CF does NOT have the upperhand, God does. ....And, when we can remember it, THAT is all that matters....

    But, until you are in that place, my heart is in the pit with you.

    Love you,
    Darcy

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  5. Hi margaux

    I have every faith you guys will kick pseudo's backside again.
    You are very in tune with Ben which shows what a great momma you are!
    the cf community is brilliant when you really need it.

    I know you will dust yourself off after this setback and get back to being the strong, fighting cf momma I know you are!!

    Take care lovely and the photos are wonderful, cracker included! :)

    Xxx

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  6. I go through this too. Whenever something new is added to Azer's regime, I get down and anxious for a few days. After that, it's manageable. As long as your child is happy, that's all that really matters!

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  7. Margaux, sophs culture grew pseudo but she grows it all the time now :( luckily for her, it hasn't caused any bother yet xxx

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