Wednesday, March 9, 2011

Stay of Execution

Today was yet another "hold your breath until the scale shows a number' day.

As usual I am too bent on sharing the news to give you the whole story, but I will give you a short version.

Jack wouldn't comply with my desire for him to eat a big breakfast. Some Pediasure and some bacon, and we were off to start the day. Check in in the waiting room. Wait.


Ok, so we didn't have to wait that long. They called us back, and knowing we were headed straight to the scale, Mike started undressing him en route. Shoes, Socks, pants, t shirt that didn't want to come off of his big head. I choked on my heart while the numbers flickered back and forth and I tried to plug them in to the conversion app on my phone. (weights taken in kg, I am generally more familiar with lbs)

2 ounces.

I stifled every emotion that was threatening me at that moment and committed myself to hearing what the medical team had to say. Mike offered a family hug and I offered a surly "I don't need a hug" sneer. (I'm prickly, sorry)

The dietitian came in and asked how everyone was doing and Good Mom of Good Patient with a Good Attitude said "Good, how are you?" I showed her his food journal and we discussed the improvement in his intake, and she mentioned that he 'did gain this time'. I must have looked slightly confused, and she gave me a questioning glance. "He gained 2 ounces, is that...enough?"

And my heart stopped for just a minute when she replied:


"He gained six ounces. His average daily gain was 13 grams this time. (up from 1.3 previously) We would like to see him at 15, but if he can maintain this rate, we won't have to go ahead with the tube."2011-03-08 09.23.15

Good Mom of a Good Patient with a Good Attitude didn't jump up and down, or squeal, or do the most ridiculous looking dance you have ever seen. (Until later)

We have been granted a one month reprieve until the next weight check, and the whole team was pleased that J FINALLY showed some upward momentum.
I personally can't articulate how this small triumph is really a big deal. We've got a ways to go, and the whole thing serves as a reminder that CF is a never-ending battle. But every inch we can take back, every bite we fight for, every intervention we can avoid, and every clear breath he draws is not taken for granted.

My phone has been insane with congratulatory calls and texts. My social media is buzzing like mad. Today I have talked to friends and family in Brazil, Canada, here in the States, England, Ireland, and Australia. I am again reminded that our the roots of our support system run deep and are strong. I am blessed, and humbled, and mindful of the gifts we have, and pledge again to go forward with love and generosity and to help anyone I may be able to.

1 comment:

  1. Congrats to you! Weigh ins are just that- parent report cards. Hate. That. Feeling. I feel your emotion as you wait for that damn scale to show GOOD results. There are so many times that I wanted to tell the nurses and doctors I broke the scale and what were they going to do about it?! It seems ridiculous that our childrens lives "weigh" on this damn scale. Kudos to you. We use lots of tv during meals and lots of junk that she loves. Sounds like you are headed to stun the clinic pretty soon with your new numbers next time...once you find a way that works for YOU and your little's free sailing. We always feel like as parents we deserve a sticker for our efforts once we leave clinic. Congrats again to you. hugs.