The Good...
Got a call from our doc today to say my amazing little CF Princess had managed to kick the Steno in under 2wks...so happy with her!! Along with that she has gained another half pound and grown another 1cm! 75th percentile for height and weight...GO EVE!!!! :) Maybe its all the banoffee pie shes been eating!
The Bad...
Just as I was getting excited about the Steno being gone, he pauses and tells me that she grew Pseudomonas in her last culture. Not good. We have managed to get through almost 5yrs without the dreaded Pseudo and here it comes crashing into our lives just when we thought she was better. She JUST got rid one of dreaded bacteria and here she is growing another. Like I said before....CF loves Eve, never gives her a God damn break.
The Ugly...
Its not the fact that Eve grew Pseudomonas that upsets me (though obviously I am not happy about it), its the fact that she now has an extra 60mins (Tobi-30mins and an extra vest treatment-30mins) added onto her already hectic schedule. Not to mention ANOTHER new antibiotic, in the form of Cipro, to add to her collection. Now she is on a grand total of...
-4 breathing treatments
-3 antibiotics
-2 Vitamins
-1 Probiotic supplement
-1 inhaler
-and a partridge in a pear tree!
Not to mention the 20 enzyme pills she takes a day!
She gets up at 8am, and has to do treatments.
She goes to school from 9am-2pm, comes home and has to do treatments straight away.
She gets her lunch, then does more treatments.
She plays for a half hour, then does more treatments.
She eats her dinner, then does more treatments.
She plays for another 15mins or so, then does more treatments. Then its bedtime....
and she wakes up the next morning for a whole new day of this routine crap!
And yet all this is done with just one little lung....and a huge smile on her face!
Get better soon. I like your blog. check out my CF blog http://mattbair.blogspot.com. Best wishes and a positive attitude makes the world of difference.
ReplyDeleteThanks Matt, I just saw your blog and saw that you have had your right lung removed? Eve, my daughter just had 75% of her right lung removed in January at aged 4. She is doing well but I do worry about her having to go through life with just one lung!
ReplyDeleteWhat a cutie pie! I love her hair.... This is the first time I have visited your blog and love it. What a stronger little girl you have raised! Great job mom!
ReplyDeleteI am just starting this CF journey with my son...
Her smile is priceless! You are one wonderful mom, she always has a smile on her face!
ReplyDeleteShe is SO cute! Sorry to hear about the bad and the ugly :o( Glad for the GOOD though! Guess they don't really outweight each other very well :o( Hopefully she can kick the Pseudo in the a** just as fast as she did the Steno! Poor little Eve...tell her we are thinking of her and here are some HUGE {{{{{{HUGS}}}}}} for her! What a day for a little girl :o(
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