Friday, January 11, 2019

Science is Amazing

Christmas and New Year came and went and despite being hooked up to IVs (Avycaz) it was probably my favorite Christmas. Kaylee is young enough to still fully buy into the magic of the season, but old enough that she had a few items she reeeaaallly wanted. In the past, she used to play with everything and anything which meant she had no particular interest in any one thing. So when she asked for Christmas gifts all she wanted was "surprises" or "toys". This made shopping so much harder. This year she finally asked for specific items and spent the month leading up to Christmas so hopeful for these few items. It made shopping and gift giving so much more fun knowing how badly she wanted the gifts she received. Also, her current cat obsession meant that as long as something was cat themed she would be happy Christmas morning.

I am not sure how many more years (if any) we can pull off the Santa story so this year felt bittersweet. There have been doubts in our home about the truth behind Santa, but that Norad Santa Tracker sure helped put the seed of belief back in her mind. Watching the "video image" from the satellite she kept saying, "someone wouldn't' just dress up and ride in a sleigh to trick people..." Luckily, it never crossed her mind that the images weren't real. Maybe we can squeak out another year of believing? Or 2? Or 10? Okay, maybe not, but it was fun while it lasted.

So CF has been full on the past few months and as I was in the middle of home IVs I got a call from my doctor that may explain why I haven't been responding in the way we would hope from IVs. They found a bug in my culture (e-coli...I know it is too gross to even think about, but what can you do. Such is life). The medication I was using doesn't cover e-coli so we are going to try a different medication. I actually cultured e-coli in March and I was hospitalized for desensitization to Zosyn.

The original plan was to go back to the ICU and go through desensitization since we successfully treated it in March that way. However, apparently the ICU is a popular place in January (go figure) and the likelihood of finding a bed was slim. Amazingly, my doctor said there was another new medication available. You guys, there are NEW antibiotics for CF! This makes my CF heart so happy especially since I am allergic to so many!! It buys us all a bit of time when it comes to resistance and who doesn't want to buy a bit of time in this life? So if all goes well I will do a test dose at the infusion center to make sure I am not allergic and do home IVs. HOME IVS! No ICU!

And my cynical little self isn't holding my breath that all will work out until I am sitting in the infusion center with my test dose because things rarely go exactly as planned. And I am not 100% confident that this med will even work the way we want it to because this is my 4th month of trying to kick this infections, BUT the fact that there are even other options available makes me so happy.

Science is amazing!


  1. That's awesome! Any more news on this new med for you??

  2. I started on Friday and I think it is already helping which is amazing. I usually need at least a week to feel any improvement, but this one seems to be helping after only 5 days. Woohoo! Thanks for asking.