Or the family pictures our church takes every year on this special day.
It wasn't about the fantastic meal (my husband made yummy prime rib), or the matching outfits (that I still made everyone wear for ONE picture), or the pretty flowers.
It wasn't even about the beautiful sapphire ring my princess gifted me with...
My day was simple.
My day was beautiful.
My day was spent at home enjoying the miracles that ARE my children.
We found out a few weeks ago that our sweet little man was diagnosed with pseudomonas. We were told to avoid anyone that might be or has been sick, so church was not an option. Also, as random as this may sound... there are actually two other kiddos at our church with CF, so we would be a danger to them as well. Our last 26 days have included TOBI treatments twice a day at about 25-30 minutes each, bloody noses, a sad sounding raspy cry, diarrhea (which may be unrelated, but it started with TOBI and hasn't stopped since...poor baby).
Psuedomonas is ugly. We have known that eventually one of the three of us would likely culture it, but never did I think it would be my tiny guy! Ellie didn't culture it (as I pat myself on the back for being a mommy that runs a pretty sterile household!) which was great news. So then, the concern became about me. I hadn't been to clinic in...well, let's just say it had been awhile. I was feeling good, I thought, for having two little kids and running around like crazy every.single.day!
Cullen and Ellie's CF doc demanded that I go to clinic and get a culture done to check me for psuedomonas asap. So, I called the next day and I was at clinic the very next day! Can you sense the urgency here...
Weight check...depressing!
Moment my doc saw me...I got scolded!
PFT...AWFUL!
My FEV1 dropped 12%! Which leaves me at 84% (I double checked to make sure I am documenting the correct numbers for future reference) lung function. WOW. I went from 96% to 84% in a matter on months...albeit, several of them spent in a bed, but that is just plain scary!
My doc is awesome. And a super honest genius in the CF community. She said plainly, "If you would do your treatment you wouldn't be in this situation. I'm not going to worry about you, you will get back on track...BY DOING YOUR TREATMENTS"!!!!!
So, I got a new 50 psi compressor (which blows up a kiddie pool in 2.2 seconds) and all news meds...if you add my treatment times to Ellie's and Cullen's we are busy for almost 2 hours twice a day! I couldn't get a good sputum culture, so we did a swab which didn't show psuedomonas, but I am under orders to produce a better "glob" of the good stuff and bring it to the lab.
In all honesty, my CF clinic was a wake up call for me. Get healthy, so that all of the Mother's Day to come can be about the matching outfits and family pictures at church. (Totally kidding, but I have to have humor in the midst of this craziness)
Blessings,
Angie
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