Monday, December 26, 2016

Week 175: Solstice

Here it is, the last post of 2016...

Our most anticipated holiday gift arrived early last week: Cayston! It comes as a 28 day supply, carefully laid out in a giant box that has to live in your refrigerator, with its own special proprietary nebulizer and power supply. It has to be given 3 times a day, and for each dose you have to mix a vial of saline with a vial of the drug, then assemble the nebulizer and put in the drug, connect it to the power supply, and then let it run for 3 or so minutes until the medication is gone. Then disassemble the nebulizer, wash the parts with soapy water, rinse them, and let them dry before the next dose. In short, it's a bit of a hassle, but a hassle we welcome. The new drug made Ezra cough a lot the first few times he did it, but now he's tolerating it really well, and even holds the mask up to his face himself while he's doing the treatment. We kept going with the oral augmentin until Saturday, when we felt like he was really inhaling all the Cayston at each dose. 

So, where are we after a month of levofloxacin, a week of augmentin + Cayston, and a couple of days of Cayston alone? Still coughing, Not a tremendous amount, not much while sleeping, not puking, but very definitely not at baseline. Both Papa Bear and I feel like we've once again hit a plateau where he is on antibiotics and feeling fine, but something is definitely still up with his lungs. This is not a comfortable feeling. The course of Cayston is 28 days so we will keep going and hope that a month of 3 treatments a day plus the inhaled antibiotics does something. If it doesn't I imagine we'll be admitted again at the end (if not sooner) for more IV's. Blech.








Focusing on the positive, we had a lovely Christmas visit from Grandma Carol and Grandpa Dudley. We did lots of holiday things together, including visiting the Christmas tree at the state capitol building, and going to a display of model trains and Lego constructions at the local botanical garden. Papa Bear made our diminutive fake Christmas tree at home look quite festive, and the kids were very excited about all their new toys. the boxes they came in, and the paper that was wrapped around them. Many more holiday photos after the end of the post for those who are interested.

It is hard to believe that we are now in the last week of 2016. What a year, on so many levels. Our plan for this last week of this wild year was to go "home," to Boston, to see all of our friends who still live there and ring in 2017 with them. I should be packing now. But, alas, CF has had other plans for us. We really did not want to cancel this trip, and debated it long and hard. But no matter which way we looked at it, the answer seemed pretty obvious. Lemon is well enough to travel in the immediate sense--he isn't too sick to fly and he wouldn't be in any immediate peril on an airplane. But he has been sick, like on serious medication and being hospitalized sick, for going on 3.5 months. If he were to catch something while traveling by pressurized contagion dispenser (ie commercial aircraft), it would be an absolute disaster for his health. He would almost certainly have to be hospitalized immediately. And if he fell ill and had to be hospitalized while we were in Boston, it would be a logistical and financial nightmare that I don't really even wish to think about. The last straw was when we discovered that Grandpa Dudley had caught bronchitis, presumably on his flight from New York to Wisconsin. So, we're staying put for now. We've cancelled so many trips at this point that we actually had to eat the cost of some of our Southwest tickets because we originally bought them a year ago, but such is life.

I think our New Year's resolution for 2017 is that we will not plan any more winter trips involving airplanes. We gave up on Thanksgiving a few years ago, and I think for now we need to set aside the trip east between Christmas and New Years. We were lucky and got away with it for a few years but by a whisker every time, and I feel like our number is up. We're going to focus our travel efforts on the warmer months--so stay tuned, Bostonians, we will be seeing you soon. Not as soon as we wanted, but soon none the less.  

Good bye, 2016. We're one year closer to a cure, for Lemon and everyone else who needs one.












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