Saturday, July 30

Culture Results...

It's been a busy week keeping up for a non- eating toddler, managing calls from the clinic, and just living life around here. It's been a week of self indulgences to help soothe the mind of might may be coming. And again, we got the call that Madeline is still culturing Pseudo...

It's been 8 months since we first heard of her culturing it and as time goes by we all loose a little hope that we can actually ever get rid of it. At every call that comes in from the clinic with a positive result, we all continue to feel the lack of control we have over this whole situation.

It's still hard to admit that you can only do so much to help your child. And for whatever reason- the inhaled antibiotic (TOBI) that she is on seems to be just managing the pseudo (not killing it entirely). Her cultures show the same amount of pseudo through the past 8 months. And although it is good that her Pseudo growth doesn't seem to worsen, it still doesn't help that it isn't lessening it either. And now we all begin to struggle with: Will it EVER go away?

There is always hope and we continue to hang on but time is a killer. With each passing month after completing another round of inhaled antibiotics, we loose more hope. And with each month that Pseudo stays, we all worry about what is actually going on in those lungs....

The reality is that Madeline looks great. In fact, after strangers and old friends learn that she has CF and has cultured Pseudo, we often hear..."But she looks so healthy and so great..." On the outside she looks sooo healthy. She has an unbelievable amount of energy. She runs till she wears ME out and it seems that there could be no possible way that this bug found it's way inside of her. And for all of this., I am so grateful. I am so grateful that even though she is culturing it, she isn't symptomatic....

I even find myself looking at her and thinking. "How on EARTH could she be culturing pseudo? Did they switch the swabs after sending them to the lab?" But maybe this is the worst part.... because inside we know that Pseudo is known for damaging lung tissue which is often why pulmonologists (and m's doctors) are so aggressive at treating it. So even though she looks great on the outside, we just don't know everything yet.

At the start of August, we will again start a new month of inhaled antibiotics to try to combat this beast again.
The process of hope starts over again. And after hearing the positive culture  results we will jump back to our excessive hand washing, avoidance of those that are sick, and antibacterial wiping routine. Because really....it just could be worse. In the end, we know that what we are doing for Madeline may be  just the best we can do...even if we don't like the results....







4 comments:

  1. Sharlene HammondJuly 30, 2011 at 1:46 PM

    Like you said, at least the Pseudo isn't multiplying...that's a blessing. You and Jack are so strong, stronger than the two of you realize. Know that we are continuing to pray for the Longs and we'll never lose hope. LOVE YOU!

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  2. Stay strong Sandy! I am so with you on this battle against Pseudo, you are doing everything you possibly can to beat it! Best news is that Madeline is healthy, energetic and doing so well! The day will come when we can both say that our babies are Pseudo free! x

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  3. Sandy, have they talked to you about IV antibiotics? After 12 days of IV antibiotics Zoey got rid of her psuedo, then again she picked up MRSA somewhere. I was just wondering! Don't you just hate the but she looks so healthy comment? I do. Zoey and I are sending hugs to you and M.

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  4. I saw your link on the Cystic Life page and wanted to stop by and say hello. I'm not a CFer, but my boyfriend is, so I feel like I'm vicariously living it as well.

    Your sweet babygirl is BEAUTIFUL. By the way :) hugs to you both!

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